Paige’s Stage 4 Diffuse Large B-Cell Lymphoma Story
Paige was diagnosed with stage 4 Diffuse Large B-Cell Lymphoma at 28 years old. After initially dismissing her symptoms, her insistence on getting a CT scan put her on a path she never thought she’d be on.
She shares the importance of self-advocacy, a good support system, having a positive attitude, and how sometimes, you just need to take things a day at a time.
Name: Paige C.
Diagnosis:
Diffuse Large B-Cell Lymphoma
Non-Hodgkin’s Lymphoma
Staging: 4
Symptoms:
Weight loss
Extreme fatigue
Swollen lymph nodes in the neck
Treatment:
R-EPOCH chemotherapy
This is your journey and however you want to choose to have it, you’re able to do it. At the end of the day, it’s your journey and you’re going to have to figure it out.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I live in California. I like to go to the beach, tan, go out with my friends, [and] try new restaurants. I love a good glass of rosé, espresso martinis, [and] just living the normal 20-year-old lifestyle while trying to balance having cancer and everything.
I’m a very positive person. I’m enthusiastic. I’m social. I try and look at the bright side of things. I think everything happens for a reason. Any challenge you have, just face it one step in front of the other. That’s how you’re going to get through life.
Initial symptoms
I was really, really nauseous. I [noticed] I’ve lost a lot of weight. I was like, “Great! This is awesome!” But obviously, it’s not awesome. I didn’t really put two and two together.
I was always tired [that] I stopped working out. I used to work out all the time and I was just too tired to work out. [I] started losing weight and didn’t really think anything of it.
Then I always have chest pain. I’m like, “Okay, just anxiety.”
Every symptom could be your day-to-day: bruising, night sweating (very common if you live in California), losing weight, being tired, [and] having chest pain, which I thought was just anxiety.
Then, all of a sudden, I was unbelievably nauseous for about a month. It would creep up to the point that I even started wearing seasick bracelets. There’s something going on that I had absolutely no clue [about]. I thought it was a stomach ulcer or a bacteria.
I went to the emergency room one day after work and they’re like, “You have to get an ultrasound.” I was like, “I need a CT scan. I don’t think an ultrasound is going to tell me anything.” They were like, “An ultrasound’s fine. You can’t even get a CT scan until you do an ultrasound.”
I end up getting a CT scan and they see a mass in my chest and a little below. The emergency room calls and tells me, “You have cancer until proven otherwise.” Basically, cancer until proven guilty, which is just wild to me that that’s how you tell somebody.
I was unbelievably nauseous for about a month. It would creep up to the point that I even started wearing seasick bracelets. There’s something going on…
Sisters
Deciding to get checked
I was so nauseous to the point that I was not able to work. I would lay in bed. On the weekends, I would normally go out [but] I would come [home] to hang out with my parents and just sleep.
I was in New York and we were visiting my little sister who was doing an internship. I slept for two days, exhausted. I was drinking champagne to try something to make me feel better and nothing would work. I would just power through it but I was so incredibly sick. I even called the doctor, “Can you send me Zofran in New York?”
After that, I was like, “Something is wrong.” I had every symptom of morning sickness and I was like, “Am I pregnant?” But I took pregnancy tests and [the were] all negative.
It was just wild because all that doesn’t add up to cancer, which is just insane to me.
Diagnosis
Reaction to the diagnosis
The lady [from the] emergency room called me and was like, “I’m sorry to be the bearer of bad news, but here’s an oncology number.” I called the number she gave me, bawling my eyes out, and left a message. They called me back in 10 minutes and it was like, “Oh my god. It’s okay. Are you okay?” It was this really nice lady. She is an onboarding person. I was just hysterically crying. I was by myself in my apartment [when I] got the phone call.
I made an appointment. Then I called my parents hysterically crying. It was insane. I did not process it well. I just cried. Then I think I drove home. I don’t really remember. It’s all kind of a blur.
I got home from New York Sunday. Tuesday, I went to the emergency room and then Wednesday, I had a CT scan. Wednesday at 5:30, they called me and told me. Then Thursday, I was in Newport. I had an appointment that Monday with oncology and my parents were going to be there. They’re both very involved [and] supportive, which I’m so grateful for.
On Friday, I was so nauseous [that] I couldn’t get out of bed. I was so, so sick. I called the oncologist, “Can I come in today? I don’t know what to do.” He was like, “If you go to the emergency room, I’ll admit you.”
Never been to a hospital in my life so I call my mom. One of my friends actually drove me, which I’m so grateful for. I had to call my friend and be like, “Hi, I have cancer. Can you drive me to the emergency room?” That’s an interesting phone call that your friend gets. She ended up driving to the emergency room. My mom met me there [with] overnight bags.
I go to the hospital, go to the emergency room, [and] the oncologist met me before I was admitted. She did a biopsy, a CT scan, and [an] echo gram. We did fast-forward the entire process, which, looking back, I’m so grateful for. If I [wasn’t] in the hospital, I probably wouldn’t have gotten treatment until [later].
I was at Hoag and USC Keck. I could not be more grateful for all the doctors. I hate the hospital but I couldn’t imagine it being at another hospital.
No time for a second opinion
The hardest part is trusting the doctors. I didn’t have time to get a second opinion. He was like, “You can get a second opinion, but you have no time.” I had to start treatment. I think I went in Tuesday and I start treatment that Monday so I had no time to process [everything].
It’s just overwhelming. Trusting the process and realizing that non-Hodgkin’s lymphoma is what they call “curable” so just trusting that this is the best treatment.
I’m doing six rounds of chemo. That’s insane. I didn’t really trust the entire process until I got my PET scan and the results turned out really, really good so that’s what made me realize, Okay, the doctor knows what he’s doing. Everyone has told me, “Oh my god, that’s your doctor? You have the best doctor. Wow, that’s amazing.” Just really having to put faith in someone else’s hands. Not having control is really hard.
The hardest part is trusting the doctors. I didn’t have time to get a second opinion.
Chemotherapy begins
Treatment
R-EPOCH chemotherapy
The treatment’s called R-EPOCH. It’s six rounds and five days in the hospital so it’s 96 hours of chemo. I was so overwhelmed when he told me [about] the treatment. It was a lot.
I get in the hospital and they have to do a COVID test, a MRSA test, all these crazy tests. They have to access my port. My port is really hard to access because I didn’t want it noticeable so that’s kind of a positive part, I guess. Then they start the 96 hours of chemo.
They start it Monday and then Friday, I end up being out at 4:00 or 5:00, whatever time they’re able to start the chemo that Monday. It’s at their mercy. They call me up whenever the hospital has room and tell me [to] pack a bag.
My week one [of] chemo was a nightmare. I don’t remember any of it. I’m an Advil gal and that’s about it. I was pumped with so many drugs — Zofran, Xanax, Ativan — and just the emotional toll of all of it so I do not remember most of my first treatment at all.
It was scary being in a hospital for five days. It’s actually terrifying. I [ended] up getting really good headphones because I’ll wake up in the [middle of the] night and hear screaming. It’s like, “Nurse, get off me” or “Stop putting an IV in me.” I’m terrified of the hospital and I think it’s going to give me PTSD [for] the rest of my life. They try to be really supportive. The nurses are amazing, but it’s not their fault.
The nurses have been nothing but great. They come [into] my room and hang out in there. The night nurses come in and do funny dancing so I have a bunch of videos of me dancing. They just try and do anything to put a smile on your face.
Looking back, after my PET scan, it was a lot bigger than I ever thought it was. I didn’t realize how huge the tumor was and I was just feeling extremely overwhelmed. I just had to keep going forward and put one foot in front of the other.
Hair loss from chemotherapy
Two weeks after your first treatment, you end up losing your hair. I haven’t lost all of my hair and I decided not to shave my head. I know a lot of people do and more power to them. I just couldn’t do it. But it’s really hard to see clumps of your hair falling out. That is a whole ’nother ball game in itself.
And then being on hormone pills when you already don’t feel like yourself… You’re already emotional. I don’t know how I handled it to this day.
I cried every day. It was miserable. I started journaling a lot, writing down all of my feelings, and everything. I think that has really, really helped me. Just journaling every emotion — the good, the bad, the ugly.
It shrunk [by] about 80% and they think right now it’s just dead tissue, which is amazing. My tumor originally was active 10 and now it’s 2.9. They want it active at 2.
I only have one more until my last treatment. The PET scan was looking great so I am excited to be in remission. I’m just stoked about it.
Plans after treatment
I’m going to take [a month] for myself. It’s going to be like a Paige month, what I want to do.
I’m going to get a personal trainer, get back into working out, go on walks, try new restaurants, and travel. I’m going to Switzerland for about two weeks.
I am also starting a podcast with one of my girlfriends. It’s called “Our Life Changes.” Life can change. It doesn’t matter if you have cancer, if you’re Navy SEALs, if you got hit by a car, or won the lottery. Life always changes. Things always happen.
I think I’m just going to look at different opportunities. I am in marketing so I will probably go back to looking for a 9-to-5 job. I don’t know what I want to do exactly. I want to do something meaningful.
I’m going to try [to] get back out there and date. It’s going to be a wild ride. I was talking to my therapist and she was like, “Do you want to date that person? You’re a friggin’ rock star. You kicked cancer’s ass. You did amazing. Do they get to spend time with you?” Reverse psychology and not like, “Is he going to text me back?” I want to spend time with him. Are they worthy of my time? Your friends — do they get to hang out with me? Just reverse psychology all of that instead of thinking the way a lot of people think.
Living life as a young adult with cancer
I just had to do what made me feel right and push myself forward. I still wanted to be normal. I still wanted to be able to go out with my friends. I still wanted to be able to work. I still want to be able to have all the energy traveling, which obviously had to get put on [hold].
Your twenties is hard enough. Dealing with dating, friends, life, job, [and] finances, then having cancer on top of it is just insane. I think just really figuring out who I am as a person and what my goals are, what I want in life, and what I want to achieve.
I was single [at] the time. I was dating a bit. Then when I got the news, I put everything on pause and really wanted to focus on myself and who I am, what I expect in a person, what I value, [and] what I want. Right now, the ball’s in my court. What do I see in a person? What do I want? Do I want someone motivated? Do I want someone with ambition? Who do I want to spend my time with?
I don’t know if it’s hit me yet. I believe everything does happen for a reason. I think maybe I’m able to handle it. I have no clue why it happened to me. I’m not looking for someone to be mad at or, “Why is it me and not you over in the corner?” That’s not the person I am. Yeah, it sucks. Do I wish this upon anyone? No, but it is what it is.
Fertility preservation through egg freezing
I want to have kids in the future and when you’re going through chemo, there’s a chance you can’t have kids. I was fortunate enough to be able to freeze my eggs, which I am so grateful for. I couldn’t even imagine not being able to.
But that whole process alone was insane. I was on hormone pills for a month. I had to do treatment first then I had to go back and start the fertility processes and that took a whole entire month. Most people are only on them for about a week. Luckily, I got a bunch of eggs out of it.
I tried to turn to my family and friends, but I shut everyone out because it was such a dark spot in my life that [I’d] never been in before. I don’t do well on hormones in general and then losing your hair is another thing.
I turned to Instagram and started reaching out to a couple [of] girls who posted about it. I asked for any tips and tricks. There [are] probably 20 different messages I [sent]. I ended up meeting a couple [of] girls through Instagram and now we’re all friends. We’re all going through the same process at the same time.
I did try and do support groups — that wasn’t really my thing. But then if you have lymphoma, there’s a support group I joined and I actually am speaking at it. It’s called Lymphoma Ladies — I’m helping run that one. That’s a really positive group. When you put all the support groups together, I was so overwhelmed and I would just be hysterically crying. “Is this going to happen to me? I don’t know what to do. Oh my gosh.” And that’s not the case.
My family has been a huge, huge support. I could never imagine doing it without my family. They are amazing. They’re at the hospital all the time. My friends have been amazing. They’re always at the hospital. No one leaves. Everyone’s there with me all the time. I can reach out to people if I want.
Letting people in
A support group is literally what you need 100%. You just have to accept the fact they don’t know what you’re going through, but you need to let them in. They’re really just trying to be there and they’re really trying to help. And yes, they’re going to say the wrong thing, but you just have to be okay with that.
I think when I got off all the hormone pills because I was not myself. I was like, “I have to go back for my second treatment. I need support around me. I need friends. I need family. Am I going to be the biggest brat in the world and lose everyone that I’ve built a whole life of making?”
I just really had to look at it from trying to be positive again. You’re going to have rough days. You can have the worst day in the world and you’re at rock bottom then maybe the next day could be the best day in the world. You don’t know what the next day [brings].
Having a positive mindset
People have asked me, “Paige, how are you so positive?” You have two ways to look at it. You can look at it by being so angry at the world, so negative — and, believe me, I’m negative, angry, a lot of emotions — but you can also look at it as you have to do the treatment no matter what. You have to do this. You can look at it glass half full and just try and get help. Basically, I can be negative, I can be a total brat, or I can be positive, try and move forward, move on with my life, and learn something from it. And that’s the way I looked at it instead of being angry and shutting the world out.
I’ve always tried to be happy and live in a bubble [and] brush things off. “Oh, no, it’s fine. Whatever. It doesn’t matter.” Don’t touch my bubble, don’t pop my bubble. And then cancer popped my bubble. I was like, “Oh my god. Wait. My bubble’s gone. What do I do?” I just looked at it [as] having to just be happy, positive, and grateful for things.
At the same time, I can still be sad, I can still be upset, I can still be mad, but what’s going to make me get through this treatment? It’s going to be having people around that love you, support you, [and] care about you. Even the nurses are some of my friends now. They’re my age and they’re awesome. I’m just trying to look at the bright side of things.
Social media for support
I’m really active on social media. I might have posted a bit early before but I think I was in such shock. I didn’t really realize what I was up against. I was like, “Oh. It’s cancer. It’s stage 4. It’s fine. No big deal.” I have always posted my life and I was like, “Okay, I’m going to share this. I’m going to make a post [about] being a self-advocate and just trying to reach others.”
The feedback I’ve gotten has been amazing so I just keep posting my whole journey. I know a lot of my friends, family, my parents’ friends, and everyone has been super concerned. The amount of support I’ve had is insane. People want to know, “Is Paige okay? What’s going on? What’s happening?” I think that’s the whole reason why I just keep posting. Once I did my first post, I was like, “Okay, well, I just got to keep posting about this entire journey.”
Words of advice
Your twenties are [when] you’re finding out who you are and what you want to become. And if you get this crazy, scary diagnosis, you don’t have to have all the answers today. Keep chugging along and eventually, the roller coasters and the back flips will stop, everything will be a smooth ride, and you’re going to have different bumps in the road.
You’re not alone in this. Reach out to people who want to help you. I want young people to reach out because I feel bad. I don’t want people to go through this alone because I wish that I didn’t have to go through this alone. I went in so blindsided and that’s not the way you want to go in.
[In] the beginning, you’re going to get a million messages and it’s the most amazing. It’s the best thing [knowing] you have so much support.
When they bring you gifts, really appreciate that. They are taking the time to do that. Take them up on [what they’re offering to do]. “Can I bring you dinner?” “Can I drive you somewhere?” “Can I bring groceries?” “Yeah, you can bring me groceries.” “Yeah, I can’t get out of bed today.” “Yeah, I would love to watch a Netflix movie with you on Zoom.” There [are] so many things people want to do. Let them help you.
If you know something’s wrong with your body, you have to say something. I could have been nauseous for months and months and just not have said something. You have to be a self-advocate.
Get your blood work taken. See your doctor once a year. Go to your dentist. Go to all your appointments because you could never know what could happen to you. I see a wellness doctor. I get my blood work taken all the time and I wish it would have shown up in my blood work. I could have had it be stage one cancer and that would have been amazing. I wouldn’t have had to be in the hospital and I would have done treatment sooner. But since I didn’t have any of these signs and thought it was anxiety, that bruising was normal and night sweating, I end up being stage 4.
Listen to your doctors. Try and make friends if you can. Have a support system, accept people, and let people in. This is your journey and however you want to choose to have it, you’re able to do it. At the end of the day, it’s your journey and you’re going to have to figure it out. It is what it is.
Cost Plus Drugs Founder & Mayo Clinic Doctor Explain
Prescription drug prices in the United States are significantly higher than in other nations. In fact, 1,200 prescription drug prices rose faster than the rate of inflation between 2021 and 2022.
In this conversation, Alex Oshmyansky, founder and CEO of the Mark Cuban Cost Plus Drug Company, and Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, talk about the exorbitant costs of medicines, the impact it has on patients and families, and why the current system needs to change.
The interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
The more you delve into it, you find it’s not simple and that’s why no one is able to fix it… You just don’t even know where to start if you want to pick something.
Dr. Vincent Rajkumar
Introduction
Dr. Vincent Rajkumar, Mayo Clinic: I work at the Mayo Clinic. I’m a hematologist oncologist and my disease specialty is multiple myeloma. I do research, education, and practice as far as myeloma is concerned.
I also have an interest in drug pricing, which started because I run a lot of clinical trials and work with new drugs. I do studies on racial disparities so I’m aware of the impact [of] cost of medicines and health care [on] various communities.
When it comes to drug prices, there’s [an] impact on the patients, who are the people actually affected by the disease, as well as the cost of taking care of the disease. [I] hear not only from patients that I myself treat but also from patients across the country.
I wrote my first paper on [the] cost of prescription drugs in 2012 and it was focused on cancer — the high price of cancer drugs and what we can do about it. It was mainly because I worked on Thalidomide, which was the drug that was banned in the 1950s because it caused teratogenicity.
I’m probably the only physician in the world who actually used Thalidomide to treat leprosy, which was approved for, and subsequently started using it for myeloma. I was in India using Thalidomide for leprosy and it was given to us basically free of cost in huge buckets that you could use to treat patients.
Then I come to the US and I find Thalidomide costs $10,000 a month. This drug should cost $10!
I see the price of Lenalidomide launched at around $4,500 and then going up every year to $5,000, $6,000, $8,000, $10,000… and you’re going, What’s happening? That’s when I said I really need to understand the root cause of these problems.
The more you delve into it, you find it’s not simple and that’s why no one is able to fix it. It starts with monopolistic pricing then the middlemen and the whole infrastructure that you just don’t even know where to start if you want to pick something.
Alex Oshmyanksy, Mark Cuban Cost Plus Drug Company: I’m a board-certified diagnostic radiologist. I have a PhD in applied mathematics. When I was a kid, I was going to be a string theorist, so a high-energy particle physicist. I was being fast-tracked into that. With all the wisdom of a teenager, I decided that wasn’t going to be impactful enough in the real world so [I] made a hard shift [in] my last year of college and decided to major in biochemistry instead. [I] graduated at 18 and went on to medical school and completed an MD-PhD program.
While I was at Hopkins, I was working with a pulmonologist on a research project. One day, he came in infuriated because two of his patients died over the same weekend. They both needed a drug called Bosentan, which treats primary pulmonary artery hypertension — hypertension specifically of the big blood vessel that comes out of the heart and goes to the lungs — and they both needed it urgently.
At the time, the medication cost $10,000 for a month’s supply, despite the fact that it was long off-patent [and] was a generic product at that point. They were meant to apply to a patient assistance program set up as a nonprofit by the manufacturer who made the product, got caught in the red tape, and both of them tragically died [on] the same weekend.
I had been angry about these topics for some time and you think that’d be enough to set me off. But what really became the straw that broke the camel’s back was Martin Shkreli, the so-called pharma bro.
In 2015, he was a social media villain-of-the-day type [of] guy. He was a hedge fund manager who took over a pharmaceutical company and increased the price of a drug called Daraprim — generic Pyrimethamine, primarily used by indigent patients or immunocompromised — by over 10,000%, hundreds of dollars a tablet.
I got very mad and some of my friends, who are also doctors, [also] did. We decided very naively, “Let’s set up a nonprofit pharmaceutical company that will make drugs [and] sell them at cost.” While working as a doctor, [I] went out for the better part of three to four years trying to raise funding for the nonprofit and did not succeed. Failed spectacularly — raised $0 beyond what I put in myself.
Eventually, [I] got talked into converting it to a for-profit public benefit corporation — [a] for-profit company but with a registered public mission with the state. [I] sent Mark Cuban a cold email on a whim and surprise, surprise! He reads all his emails. And the rest, as they say, is history.
The path is incredibly complicated. It’s very convoluted and that’s by design.
Alex Oshmyansky
The path from pharma to pharmacy
Stephanie, The Patient Story: There is this path that goes from the pharmaceutical companies — with the research and development of these drugs — to the pharmacies where you and I go to pick up the drugs and the prescriptions. Could you summarize what happens? What is in this path here?
Alex, Cost Plus Drugs: The path is incredibly complicated. It’s very convoluted and that’s by design. There’s a layer of financial engineering that takes place between you and actually purchasing the product.
Pharmacy benefit managers are firms [that] are outsourced to by insurance companies to decide which products are covered by insurance. They manage all the payments. Back in the 1980s, before computers were as widespread, they were initially there to literally process payments. They would get paid to do the paperwork when a prescription insurance claim was submitted.
What they realized over time was, Since we’re paying for the drugs anyway, we can collectively bargain for the drugs. They turned into negotiators for drug prices, which sounds good.
Eventually, what they realized was, The way we’re getting paid is we take a percentage of the savings. The best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.
Imagine you wanted to buy a [car] but you hate negotiating at the car lot. It’s miserable. Everybody hates that. Somebody comes up to you and [says], “Hey, I will do the negotiating for you and in exchange, I get 10% or 20%,” or whatever the amount of money they save you. You’re like, “You know what? That’s worth it to me. I hate negotiating.”
The negotiator comes back and says, “Hey, amazing news. I got you a great deal. I got you 90% off of your [car].” “That’s amazing. How did you do that?” “I’m really, really good at negotiating.” Come to find out the sticker price on the [car] was $1,000,000 and you’re paying $100,000 for your [car] plus the fee from the negotiator, which is another $90,000. All of a sudden, you’re paying $200,000 for your [car]. That sounds like a crazy, over-the-top example, but it really happens.
What they (pharmacy benefit managers) realized was… the best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.
Alex Oshmyansky
The example drug that I use all the time — because it’s the most extreme edge case — is a product we offer called Imatinib, which is a chemotherapy product. It’s a tyrosine kinase inhibitor for chronic myelogenous leukemia and you need to be on it for many, many years. The list price, the so-called average wholesale price, is $10,000 for a month’s supply.
Now, if you get it through your insurance and you have a high deductible plan, it’ll be “adjudicated” at between $2,000 and $3,200 as the negotiated discount price plus the margin for the PBM. Meanwhile, if you get it from the Mark Cuban Cost Plus Drug Company, it’s $39 for a month’s supply. That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer. It’s the intermediaries in the pharmaceutical supply chain taking a percentage of the rebate. It’s just one of the many, many scams [that] has evolved over the past 30 years to take advantage of the sick and vulnerable and it’s absolutely morally repugnant.
That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer.
Alex Oshmyansky
Drug price disparity
Dr. Rajkumar, Mayo Clinic: You don’t see that kind of spread anywhere else with any other product. It’s happening because there are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.
Unless the patients are aware, you could be vulnerable to high prices, whether it’s insulin, Gleevec, a new cancer medicine, [or] an old medicine. What we find is where the prescription goes, how the prescription is written, [and] what you’re aware of as far as the coupons and rebates you get can really affect how much you pay for that medicine. And it’s not a small dollar amount.
There are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.
Dr. Vincent Rajkumar
Stephanie, The Patient Story: We know about pharma companies and the R&D that happens there. There’s a price set. Can you describe the path?
Alex, Cost Plus Drugs: Basically, the wholesalers do take a markup. On specific products, it can be a very, very high markup. Our initial product, Albendazole, an antiparasitic drug, is available from us for [about] $30 for two pills and a complete course of treatment tends to be two pills. But, as far as we could tell, about $70 a pill from the pharmaceutical wholesalers if you purchase it directly from them.
There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles once you purchase from a wholesaler. That sounds like a lot and it is. It’s perhaps a bit too much but at least they serve a function. They send the products around the country.
The best way I can describe it is it’s basically a pile of spaghetti with lines going [in] every direction from all the various different actors — PSAOs (Pharmacy Services Administrative Organizations), GPOs (Group Purchasing Organizations), the insurance companies, the pharmacy benefit managers, patients — about the way money winds up flowing in the pharmaceutical industry.
The way I think about it is this is a feature, not a bug. The system is so artificially complicated that it permits basically theft in the service of it.
There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles.
Alex Oshmyansky
Understanding drug pricing
Stephanie, The Patient Story: Let’s just give an example for a $10 pill. Let’s say that’s what the pharmaceutical company has set the price on. Can you give an example of “roughly” what that could look like by the time it gets to us?
Alex, Cost Plus Drugs: On average, it’ll be about $20 from the wholesaler. The pharmacy will probably add on let’s say $10 just to keep the numbers round. It’s usually maybe more $6 to $8, but let’s say at the pharmacy, it’s about $30. Then the price manipulation starts to happen and that’ll be the actual price at the end of the day.
There’ll be a number of artificial prices put on it depending on if it’s a brand name drug [or] a generic drug. Let’s say it’s a generic drug for the sake of argument. Generally, a generic drug is priced at a pharmacy benefit manager at about an 85% discount. They will say that the price of the drug is, in this case, $200 so that’ll be the price you see if you try to pay cash at a pharmacy without using a special program of some kind. It’ll be artificially inflated to $200 so they can negotiate it back down to $30 and then charge a little bit more for the service of negotiating.
The manufacturer will have to pay a rebate to the PBM, who in turn takes a cut and forwards part of the rebate to the insurance company that’s paying the ultimate bill. But the insurance company has to pay the whole thing first. [Plus] the wholesaler, somewhere in the mix of all of this, holds the money for six months and makes money off of the interest. It’s a whole morass.
Dr. Rajkumar, Mayo Clinic: Unfortunately, there’s no rhyme or reason for these prices. Patients can go and play around on some websites, like GoodRx.com. [If] you enter the name of a drug and order a 30-day supply, you would find a coupon for [a] 90% discount. If you order [a] 60-day supply or a 90-day supply, you may get a [bigger] discount.
For example, Lenalidomide, which is Revlimid. Medicare spends more money on Lenalidomide than just about every other drug. The drug costs the same whether it’s a 5 mg tablet, 10 mg tablet, 15 mg, or 25. [If] you take two 5 mg tablets, [you’ll] be paying double the amount — $36,000 instead of $18,000. I’m giving an extreme example but [for] many drugs, you have to really look. Taking the drug twice a day just because you want to break it down is not going to be the same price. You pay double.
Stephanie, The Patient Story: How can there be such a disparity going from point A, which is the same, but in a hundred different locations? It’s just all over the map.
Dr. Rajkumar, Mayo Clinic: Yeah, and it’s hard to regulate. There is no transparency. If you try to say let’s not have rebates, then the people in the middle could just convert rebates into fees. This is how much I charge for me to buy the drug from someone and give it to you. They can add five different types of fees in between so that the price of the drug gets marked up.
I think government and regulators have to take a close look at this. The Federal Trade Commission [has] to really look into who’s making profits, how, what is competitive, what is anti-competitive — all of that has to be looked into.
Meanwhile, patients, as well as physicians, can be aware of the system. Be aware that it’s not just simply getting a prescription and getting it filled at the closest pharmacy. Be aware that your copay for insurance might be higher than if you just paid cash for the same drug without going through your insurance company. And that could be substantial.
After I posted my tweet, people were posting, “It cost me $250 with insurance and $10 cash.” Then why have insurance? Unfortunately, even physicians are not aware of all of the disparities. You must be aware of it. Just check. Make sure your physicians check.
I tell my colleagues [to] make sure you ask patients about affordability. Can you afford this medicine? What is your insurance like? How much copay do you have? Just talking to patients and inquiring [about] their situation so that if somebody says, “No, doc, don’t worry. My prescription drugs are fully covered. I have a $10 fixed copay.” Fine, no problem. But if someone says, “I pay 5% of my prescription cost as a coinsurance,” then you better be careful how much that drug is billed, that you’re sending it to the right pharmacy.
Finding the best price for your prescription
Alex, Cost Plus Drugs: As a general rule, the worst prices will be at your big national chain pharmacies. Obviously, I’m biased but generally, for most products, we tend to have the best price or at least close to it.
We are a registered pharmaceutical wholesaler. We buy the products [directly] from the manufacturers at our flat 15% markup on top of it, a $3 dispense fee, and $5 shipping and handling at CostPlusDrugs.com. You can get any of about 1,000 generic products from our site as of today and we’ll be adding on brand-name products in the near future.
Dr. Rajkumar, Mayo Clinic: Many, many people are finding out that just going to Cost Plus Drugs and getting the generic might be much cheaper than paying the coinsurance and that shouldn’t be that way. It just doesn’t make sense.
Stephanie, The Patient Story: What can people do? What about the people who don’t have their drugs covered yet by Cost Plus? I know you’re working on that. What can they do at home?
Alex, Cost Plus Drugs: There [are] a number of different resources. Always check with the manufacturer’s website. There may be a co-payment assistance card or other cash assistance program. They might not be the most convenient things in the world but, oftentimes, you can get the cash out of pocket. You have to pay down significantly that way.
Discount card programs, like GoodRx or SingleCare, might be an opportunity. They tend to be more generic-focused as opposed to brand-name products. I think those would be the two easiest things if you need a brand-name, on-patent medication.
Generally, the easiest way to know is if it has a really easy name to pronounce, it tends to be a brand-name medicine. Google the name of the medicine, check the manufacturer’s webpage, and see if there’s a program available to help you afford it.
If it’s a generic one, check CostPlusDrugs.com. If we don’t have it, look for a discount card program; maybe there’s a discount available there. You can even ask your pharmacy, “Can I pay cash?” and see. Oftentimes, the discount cards are unnecessary and they’ll just sell you the drug cheaply.
Always check with the manufacturer’s website… Discount card programs might be an opportunity.
Alex Oshmyansky
The road ahead
Stephanie, The Patient Story: That’s amazing advice. Between the brand name and the generic, has it been much harder with one than the other?
Alex, Cost Plus Drugs: The generic companies, it’s been easier to get ahold of those products just because there [are] more of them. There’s more competition and more people looking at ways to get their products across
The brand-name companies [are] not necessarily beholden to the PBMs but it’s a big risk to them to go outside of the PBM structure, which is not great. They’re not thrilled with it because, from their perspective, they do all the R&D, they take all the legal risks, [and] they take all the bad publicity from the public when people complain about high drug costs. They’re like, Why are these companies getting a third of the revenue from our products?It’s insane.
At the same time, the status quo works for them. It’s a bit of a risk going with us but I think in our conversations behind the scenes, they’re willing to take that risk at this point. They’re kind of sick of the status quo as well. We’ll be bringing them on in the near future.
Stephanie, The Patient Story: What is the next big vision of what this landscape will be like for people?
Alex, Cost Plus Drugs: Adding more and more products, brand-name products, on a very tactical level. Beginning to work with insurance companies over the course of the next year — on our terms, of course.
Hoping long-term to change the status quo to something more sustainable based on taking the pharmaceutical marketplace and making it like any other marketplace — where you can see what the prices are and make rational, informed decisions as a patient and as a consumer based on real prices instead of make-believe numbers.
Thankfully, things are changing and they’re changing for the better.
Dr. Vincent Rajkumar
Advice for patients and families
Stephanie, The Patient Story: This was a huge eye-opening conversation. Is there anything else you’d like patients and families to know?
Dr. Rajkumar, Mayo Clinic: I just want patients and families to know, number one, people are taking notice and people are aware. People are becoming aware that this is a problem and have decided we have to change. People like me, Patients for Affordable Drugs, [and] many others are now taking notice that the others in the system are not playing well — pharmacy benefit managers, wholesalers, pharmacies — and we have to advocate for reform in that area.
I am also very happy that people like Mark Cuban have taken it on themselves. When the CEO was talking at Mayo, he said they started with 12 drugs and within a year, they’ve got almost 1,000 drugs at prices that are lower than any pharmacy in the US. Then now, hopefully, they can negotiate with pharmaceutical companies and get insulin and brand-name drugs. We’ll have to wait and see.
I don’t have any inside information, but patients should be aware that, thankfully, things are changing and they’re changing for the better. As long as they are aware that prices can be varied and physicians are aware, then even within the current system, they can find a lot of drugs — including cancer drugs — at affordable pricing.
Hoping long-term to change the status quo to something more sustainable… taking the pharmaceutical marketplace and making it like any other marketplace.
LaSonya was diagnosed with high-grade bladder cancer. As a nurse practitioner, she used her experience to do her own research so that she knows that she’s getting the best care possible.
She shares the importance of listening to your body and advocating for yourself, seeking the care you want and deserve, and getting all the information you can to make the best decision for yourself.
Thank you to Janssen for its support of our patient story series! The Patient Story retains full editorial control of our content.
The interview has been edited only for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Name: LaSonya D.
Diagnosis:
High-grade bladder cancer
Symptom:
Blood in urine
Treatment:
BCG immunotherapy
Cystectomy (bladder removal surgery)
Listen to your body. If you feel like something’s not right, it’s not right.
I am a variety of things. I’m a black woman, but I’m also a mother [and] a wife. I am a professor of nursing. I am a nurse practitioner of both family and women’s health.
When did you start feeling that something wasn’t right?
I’m really in tune with my body. If something is off, I find out what’s going on right away. I don’t waste time trying to figure things out.
I had just recovered from an elective procedure and was getting ready to go back to work. One day, I noticed blood in my urine. It seemed like it was a lot of blood. I saw some blood clots and I was thinking, I know I’m not on my menstrual cycle. What is going on? Maybe it’s something from my surgical procedure. Although it was time for me to go back to work, [my surgery] had been a month prior.
I called my surgeon and he said, “It doesn’t seem like something related to your surgery, but we’ll go ahead and have you do a urinalysis and see if you have a urinary tract infection.” I did that [and] it came back negative for infection, but positive for blood.
He said, “You need to follow up with your primary doctor.” Fortunately, I used to work for my primary doctor so I know her well. I called her on her cell phone and she said, “Why don’t you go and do a culture? In the meantime, we need to do a CAT scan of your bladder.”
A few days later, I went in for a CAT scan. It came back [showing] I had a mass in my bladder.
Finding that I had a mass in my bladder was devastating news. I was really, really thrown back by it. I was like, ‘Could it be a mistake?’
When you found out there was a mass, what was your reaction?
Being a nurse practitioner, I knew what that meant. If one of my patients [had] blood in their urine, I would have done the same exact test that my primary doctor did. It could be a urinary tract infection. It could be kidney stones. Worst-case scenario is bladder cancer.
The way I approach my patients is: Tell me why it’s not bladder cancer, like the worst thing. When somebody has a headache, why isn’t it a brain tumor? I was like, “Why is this not bladder cancer?” I would have done the same thing.
Finding that I had a mass in my bladder was devastating news. How did I get this? No one in my family, on either side, has a history of cancer. How could this be? I don’t even know one black person that has this type of cancer. I was really, really thrown back by it. I was like, “Could it be a mistake? It could be a cyst. It could be this.”
The next step was to see a urologist.
The doctor that I currently work with had a good friend that was the head urologist in [the] healthcare system we both work for. This is in January 2021 so we’re in the midst of COVID — a lot of delays trying to get surgeries and procedures done. She called him up and said, “My nurse practitioner [has] this going on. Could you please see her?” Fortunately, I was able to get an appointment the following week.
I felt so defeated and deflated. I just could not believe that this was happening to me.
Diagnosis
How was it hearing the words come out of his mouth?
I was already prepping myself mentally, but it was still devastating. I was a nervous wreck. I remember having to take off work because my blood pressure [was] through the roof. I felt so defeated and deflated. I just could not believe that this was happening to me. It took me a week or two to get myself together mentally for what was next.
Next, they needed to biopsy, resect it, and see what stage of cancer it was. I started doing a lot of reading. My biggest concern was: Is this muscle invasive? Because if it is, that means that I’m going to have to have my bladder removed, chemo, and all this stuff is going to happen really fast.
My first husband passed away [from] lymphoma. My older two kids are still in [a] deep stage of grief. For them to find out that their mom has cancer was really tough.
Being the glue of the family
My first husband passed away [from] lymphoma. At that time, it was about five years prior. My older two kids are still in [a] deep stage of grief after losing their father at 47 years old. He went downhill in a matter of three years. For them to find out that their mom has cancer was really tough.
My youngest son was away at school. He’s a dancer. He’s at the University of North Carolina School of the Arts High School. We didn’t want to tell him until he came home for summer break. There was no reason to let him know right away other than to get him all upset and worried.
It was rough, thinking about your own morbidity and your potential mortality, especially when you’re thinking about cancer.
I’m a very, very spiritual person. I’m a Christian and I very much lean on my faith, which is another thing that helped me get through this. But, at the same time, my grandmother used to always say, ‘The Lord helps those who help themselves.’
Seeking help from a therapist
I knew right away that this was going to be very stressful, not just for me but for my family. In order for me to get through this, I was going to need help.
I contacted [a friend from church] and asked if she would take me on as a client and she agreed. Right away, I started meeting with her once a week. Our meetings continued through my first treatment, from February through May. I would meet with her on a regular basis, which was so helpful for me.
A lot of times people think that you have to take on everything yourself. Especially [in] my culture, mental health is very taboo. People take it as a weakness when you need to seek out help mentally. You always hear people say, “Be strong. Suck it up. You can do this. Don’t be weak-minded.” We are human beings. We are not robots and machines. We have feelings. We have difficulty.
Or they’ll say, “Pray about it. Give it to God.” I’m a very, very spiritual person. I’m a Christian and I very much lean on my faith, which is another thing that helped me get through this. But, at the same time, my grandmother used to always say, “The Lord helps those who help themselves.” It’s important for us to help ourselves. Part of that was interacting with a therapist that could help me — someone that I could trust and someone outside of my house, my family, and my life.
It was enough for me to talk to my husband but there were some things that I was going through that I didn’t necessarily want to tell him and burden him with. He had his own burdens of worrying about my mortality or my morbidity. I wanted to be able to freely talk without having to worry about someone else’s feelings about what I was going through and it was very helpful.
I never have been one to put all my trust in another human being so I felt like I needed to do my own research and have my own questions ready so that I know that I’m getting the best care possible.
Figuring out the next steps
The first thing I did was look for a reputable bladder cancer organization. You can find anything on the Internet — some of it is true, some of it is false. You can find people that will sell you snake oil and a bucket of sand. At the same time, you can find medically-sound information.
Because I am a scholar and also a clinician, the first thing I did was pull research articles and guidelines of practice because I wanted to know what to expect. I wanted to know if whoever I was going to see [was] following the correct guidelines to take care of me or not. I never have been one to put all my trust in another human being so I felt like I needed to do my own research and have my own questions ready so that I know that I’m getting the best care possible.
The experience I had with urologists made it even clearer to me that my approach is the best approach for me. Despite the fact that I was a clinician — I actually worked in the same healthcare organization that he worked in — he did not treat me well as a patient. And thankfully, because I’m a clinician, I was able to identify that right away. But when you’re talking about lay people going to seek care, go with your gut.
If you feel like something is not quite right, get a second opinion. You’re entitled to a second opinion. Some insurance will even pay for a third opinion. Do not feel like you’re stuck with that person.
Go with your gut. If you feel like something is not quite right, get a second opinion.
Appointment with the urologist
The urologist talked to us about the procedure. He scoped my bladder and said matter of factly, “Oh, it’s bladder cancer. It’s definitely bladder cancer. But I think it’s really superficial. It’s probably not a big deal. With COVID, it’s hard to get an OR so we can schedule this out.” I said, “No. If you can’t do it, I can find a surgeon that can do it. I have very good insurance. I have a PPO. I can go anywhere I need to go. I have something growing inside of me that doesn’t belong here and I want it out.” So he was like, “Okay, I’ll go ahead and do it.”
He had someone come up to give me a COVID test because you had to have a COVID test before you could schedule your surgery. He said I can have my surgery in a week. The lady came up and did my COVID test. I didn’t notice at the time but when I think back, I didn’t see her label my specimen. Long story short, the COVID test came back positive.
How do I have COVID? I’ve been home for four weeks because I had that surgical procedure. My husband’s working from home and we’re the only ones here. We’re very, very careful and cautious. For a whole year, I’ve been working in the field, in the clinic, with patients, some with COVID, but I hadn’t had COVID. I was like, “Something’s wrong with this.”
I called my clinic and had them do another COVID test. That test came back negative. I called them and said, “I had a false positive test. This new test is negative. I do not have COVID.” They said, “Oh, well, he’s going on vacation.”
He was gone on vacation. I kept calling and advocating for myself to get on the schedule so I was able to get on the schedule for the following week. Three weeks after diagnosis, I was able to have my surgery for the resection.
During the time that I was waiting to have my surgery, I had questions for this doctor so I [sent an] inter-office message.
I checked into the hospital [on] the day of my surgery. During that time, you couldn’t have visitors so my husband couldn’t go with me to pre-op. I had to go by myself, which was very nerve-wracking. I was nervous. I didn’t know what’s going to happen.
If you’ve ever been into pre-op, there’s just beds and curtains between them so you’re not in a room by yourself. You’re in this big room. I go in pre-op. They prep me. They start your IV, get your history, [have] you sign your consent, and all those things.
He comes in before surgery and says, “Okay, we’re ready to do your surgery. I can tell you’re a very highly anxious person.” I’m thinking, Should I say what I really want to say? Or should I just not say what I really want to say? This man is getting ready to operate on me. I’m going to be asleep. He’s going to have instruments inside of me so I’m not going to say anything to put myself at any risk. So I said, “Yes, I am.” Whatever it takes for you to feel good about yourself to do what you need to do, that was my thought process. And he goes, “Well, you inter-officed me, but please don’t do that again. Do not inter-office me. If you’re going to email me, email me through the patient portal.”
I’m listening to him and thinking, We are in pre-op. You’re getting ready to resect my tumor to find out if I have cancer, if it’s superficial like you think it is.You don’t know everything. How can you tell me that this is not invasive cancer by looking at it with your eyeballs? I was like, “No, I’m not trusting that you saying superficial is enough and I want it out now.” I’m sitting here thinking, Okay, now you’re going to chastise me in the pre-op area for something that we could talk about at another time. That email [was] sent probably a week or two before so this is not urgent. You’re on vacation the whole week before so there was no reason for us to talk about that right now.
We had the surgery. Everything went well. Then he says, “It’s going to pathology and then we’ll find out what the situation is.” I said, “Okay.”
Feeling like your doctor is talking down to you
He did not see me as a colleague the way he was chastising me, in front of my colleagues, fellow nurses, and other patients. It could have been one of my patients in there with me. We’re all in the same healthcare system. He had no consideration of that. The little respect that I had left for him, I actually lost right in there.
The first thing I thought: I will never, ever in a million years refer any patients to this person. Congratulations. You will be a star in my book and the chapter is probably going to be, “Do Better,” because it was uncalled for.
If you have to drive an hour and a half or two hours to get the care that you deserve, you need to do that. How far would you drive for life?
Treatment
Getting the care you want
When I got home, I talked with my husband. We decided that once I got a definitive diagnosis, I was going to transfer my care to City of Hope. I wanted to do that because my great aunt [who] had melanoma went to City of Hope and they gave her excellent care. I was like, “We have the insurance so we can do it so let’s just do it.”
From where we live, City of Hope is about an hour and a half [away]. My husband just said, “It doesn’t matter how far it is. I’m going to take you wherever you need to go.” And for me, that’s something I can’t express more powerfully.
If you have to drive an hour and a half or two hours to get the care that you deserve, you need to do that. I tried to get my ex-husband to transfer his care to City of Hope. I tried for almost a year. Finally, when he decided that he was ready, he could not transfer. He was too ill.
City of Hope [doesn’t] have an ER. It’s a cancer hospital but you have to enter as an outpatient. By the time he decided that he wanted to go, he was an inpatient at UCLA. He could not leave the hospital. He was so ill. He was there for a month. He came home for one night and was back at the hospital the next day. Never could get him strong enough so that he could be seen there.
I kept telling him they’re doing a special trial for his type of cancer. He really needs to try to get there. But he never did. I think the first thing that he said was, “It’s so far.” It’s only an hour and a half away. How far would you drive for life? And life more abundantly. How far actually would you go?
Getting the results from pathology
We went back to the doctor and the doctor says, “I’m so sorry. I thought that this was superficial but you have high-grade bladder cancer. Even though we removed the tumor, these types of cancers have a very, very high likelihood of returning.”
The good news was that it hasn’t gotten to the muscle, but it is in the lamina propria, which is the lining inside of the bladder and the bladder wall. He said that they took an extra sample just to make sure that they were not missing anything. It was deeper than they thought it was, but it looks like there was no muscle in the tissue.
When he told us, my husband and I began to celebrate. We were happy. We were thanking God because we knew that if it was in the muscle, that [meant] chemotherapy, bladder removal — all that was going to happen, that was the next step. But if it was not in the muscle, I can at least try another treatment, which would have been BCG immunotherapy installations into my bladder over a series of time and then maintenance for three years. And if no recurrence of tumor, then I may be cured at that point.
We started celebrating and he said, “No! No! No! This isn’t anything to get excited about. This is serious. It’s high-grade cancer.” I was telling him, “Excuse me. This is something to celebrate because today, I get to keep my bladder. I’m not worried about what’s going to happen in a year, two years, or three years down the line. But this day, I get to keep my bladder and that is a blessing.”
Then he was like, “I really want you to go and have a second opinion with my colleague at USC.” I was thinking, Excuse me. The way you have treated me, there’s no way that I will ever go to anybody associated with you because they will likely be just like you and I’m not doing it. I tell him, “No, thank you. We’re going to City of Hope.” And he said, “Why do you want to go to City of Hope? It’s so far. Is there a particular reason?” I said, “Because that’s where we want to go.”
My husband interjected and said, “I will take her wherever she needs to go. If we have to get on an airplane, we will be doing that.” And I was thinking, Yes, we are those black people, not the ones that you think we are. I’m sitting here going, How dare he? The audacity to try to discourage me from going to a cancer treatment center, [an] internationally-recognized cancer treatment center, because of the distance.
I’m not worried about what’s going to happen in a year, two years, or three years down the line. But this day, I get to keep my bladder and that is a blessing.
He was saying, “We could do the BCG, which is the immunotherapy here, but there is a BCG shortage.” And this is true. There’s a national shortage of BCG because only one company makes it and I knew that. I also knew if you’re in a cancer treatment center, because of the other drugs that the hospital uses, they’re more likely going to make sure that they give them what they need first.
I felt like I was going to get a better chance of getting my BCG and getting it on time if I went there as well. We don’t think about these things as lay people, but this is something that I was able to think about and pre-plan. He probably wasn’t too thrilled [about] that. I just said, “Thank you very much. I appreciate all that you have done. Goodbye.”
Dealing with preconceived notions in healthcare
He had a picture in his mind of who I was and what my life was like. He already had his own stereotypical thoughts about who I was. Because if he didn’t, he wouldn’t have treated me that way. Not because I was his colleague, but because I was his patient. He wasn’t seeing me as a colleague, even though I was. He was seeing me as a black patient.
I don’t really know. Maybe he treats all his patients that way, but being a black woman and seeing the health disparities that we have in particular compared to other groups, I thought that he felt that he had the right to treat me the way that he did.
Why wouldn’t he say, “Well, you know, City of Hope’s an hour and a half away. Is that going to be a problem for you?” Why not say that? No, he just assumed that we couldn’t do what we needed to do or we wanted to do as far as my care went. My husband should have never had to interject and tell him, “If she needed to get on an airplane to go somewhere to get care, then I’m going to do that for her.” We shouldn’t have even had to have that conversation.
I had an aortic aneurysm. I had heart surgery at 39 years old. My doctor, my cardiologist, he is a man of color. He is Indian. When I first went to him, was diagnosed, and knew that I had to have open heart surgery, the first thing he said [was], “Now I can do this surgery right here. But because of your age, I want to send you to San Francisco. I don’t know if you know this basketball player.” He was telling me about a basketball player who had the same thing, an aneurysm. And he said, “He plays with a vest on. He had his surgery in San Francisco and they did a great job. And I think because of your age, I really want you to go there.”
He never assumed that I wouldn’t be able to go there. He never assumed that we couldn’t afford to go there. He didn’t have any assumptions. He said, “In my personal opinion, you would receive the best care here. And this is where I would like for you to go if you could.” And that’s the approach that the other doctor should have taken. It’s only an hour and a half away. How far would you drive for the best chances? The latest equipment [and] doctors that are doing research actively on your problem. Why wouldn’t you?
He said, “You will never come back here.” I said, “Touché. I’m not coming back here.” He did exactly what we needed him to do — make the initial diagnosis and that was it.
I was looking for a doctor that looked like me because I felt like I could trust a doctor that looked like me.
Transferring care to City of Hope
It was so easy. The first thing I did was pull up their different offices. Come to find out, they have clinics all over. They have offices all over California, not just in Duarte. The closest to us that has urology was in Santa Clarita. From our house, it probably takes us 45 to 50 minutes to get there. If anything needs to be done, like hospitalizations, then you go to the other place. But you can have your regular visits, including the treatment for cancer, right there in that office.
I looked at all the doctors. I was even willing to go to Duarte if I had to. I was looking for a doctor that looked like me because I felt like I could trust a doctor that looked like me. Fortunately, I found one.
When I’m taking care of patients, I look at them holistically. For example, in my clinic, probably 95% of my patients are Latinx. Most of them [are] farmworker families. Majority do not speak any English at all. I speak a little bit of Spanish, but I try to find out everything I can about the culture. I want to learn as much as I can learn about the culture because those are my patients. Those are the people that I’m seeing. When I’m taking care of them, I’m not just taking care of what’s right in front of me. I’m looking at them holistically as people, as a culture, [and] as a community. And that’s what I felt like I needed in my health care.
I need someone who knows the culture so I don’t have to explain every little thing to them and they know how to approach me as a person probably because they have some shared experiences with me. Unfortunately, the doctor I selected was not a urologist. Urogynecologist but not a uro-oncologist, which is what I needed for my problem so I had to pick someone else. And I did and it worked out really well for me.
Discussing treatment with the new team
Even if I were to stay where I was, there should have been a second resection. What helped me is their bladder cancer advocacy. There’s an organization (the Bladder Cancer Action Network) that gives patients tons of information. It’s like the American Cancer Society for bladder cancer. I was able to pull articles, look at the actual standards of care, [and] the procedure so I knew what was supposed to happen.
If it comes back negative for muscle invasion the second time, after your bladder recovers [in] about four to six weeks, they start you on immunotherapy, which is installation of the treatment into the bladder. I had to do that for six weeks.
The new doctor did the resection. I really liked her a lot. Liked her personality. She was very positive, which is what we were looking for. The resection turned out really well. Then we were going to start the BCG.
BCG immunotherapy for bladder cancer
My path was a little bit different. They did the first six weeks of BCG. During that time, I had one bladder infection that delayed treatment for a week because I had to take antibiotics then I had to go back and finish. At the end of it, they wait eight weeks and then they scope you.
It’s an infusion directly in your bladder. You have to hold it in your bladder for two hours then you can pee it out. When you start peeing it out, you have to put bleach in the toilet and be careful that nobody else uses the toilet.
The BCG was better than chemo, but it was hectic.
Side effects from BCG immunotherapy
The first day, I would be fine. Second day, I would have joint pain, flu-like symptoms, [and] fatigue. I might have pain with urination [and] bladder spasms. The more treatments I had, the more irritated and the more irritable it became.
The BCG was better than chemo, but it was hectic. With the burning with urination, it didn’t matter what they gave you, it just was not going to do it. It might take the edge off, but that was pretty much it. It’s like making your bladder raw on the inside, too, to make the environment not conducive for the tumor to grow.
Maintenance therapy for bladder cancer
The following month was my first maintenance dose of BCG, which was for three weeks — a lot better than the six weeks. Then eight weeks later, I would be scoped.
On the eighth-week scope, I had no new tumors that they could see, but they saw a bumpy area. She wanted to watch it. At that point, you would be having maintenance BCG immunotherapy every three months for whatever the prescribed time was going to be. It could be two years, three years, [or] five years. Maybe two years and then [on] year three, you do it every six months. It just depends on how well your progress is going.
My bladder is actively trying to kill me. It’s my bladder or me. What’s it going to be? I decided I’d rather it be my bladder to go.
Bladder removal surgery
New development leading to bladder removal surgery
When I had my second scope after the three-week BCG maintenance, that’s when my treatment took a different turn.
When they went in to scope my bladder again, I didn’t have any tumors but that bumpy area had gotten bigger. The doctor said, “I want to take it out.” And I said, “I want you to take it out.” I was so happy that she wanted to do the procedure.
She went in, resectioned it, pulled it, took it out, [and] sent it to pathology. When she was in there, she found another small tumor that wasn’t even detected on the scope so she took that out, too, and sent that to pathology.
That area that was flat and bumpy was the same cancer that I originally had. It just wasn’t growing in the bladder. It was growing down so it had not reached the muscle yet, thank God. It had gotten to that layer, but it hadn’t broken through to the muscle wall. Again, that makes the difference between chemotherapy [and] something else.
She also found another type of bladder cancer: carcinoma in situ. I had already done some research and I knew that most people who have that, it just comes back. It’ll be one now. Next time, it’ll be three. Next time, it’ll be five. All roads eventually lead to bladder removal for most people.
Every time, in all these treatments, you’re rolling the dice that it’s going to get to the muscle. My bladder is actively trying to kill me. It’s my bladder or me. What’s it going to be? I decided I’d rather it be my bladder to go.
I’m going to stay here. I’m determined to be here. If I go ahead and do the surgery, I have choices [regarding] the outcome. If you wait too long, it can get into the bladder wall [or] outside of the bladder wall. The wall of the bladder is very thin. It sits right on top of the uterus. Once it gets out, it goes [quickly].
You’re taking chances. And I’ve never been one to really take a lot of chances, especially with my life. I know my kids need me. I know my husband needs me. I have a lot of responsibility and I really want to be here.
At that point, I made the active decision to have my bladder removed. I talked to my doctor and when she gave me the final pathology, I said, “I really think that I want to have my bladder out.” And she goes, “You know, I was going to tell you, you could do inter-bladder chemotherapy because it’s not in the muscle. We can put the chemo in your bladder but [it] may not work. It probably won’t, long-term. If it were me, I would do the same thing.”
At that particular point, that was the reassurance that I needed. But I already made up my mind that I was going to do it.
I’ve never been one to really take a lot of chances, especially with my life. At that point, I made the active decision to have my bladder removed.
Urinary diversion options
What type of diversion am I going to have? Did I want to have a bag? No, I’m 52 years old. Why would I want a bag if I don’t have to?
The next choice was a neobladder, [where] they make the bladder out of [the] colon, put it back to where the old bladder was, and you can urinate like usual. But there [are] some challenges with that. One is my urethra. I didn’t want to keep my urethra because that could have cancer later. Two was that usually, the neobladder works better with men because women tend to have more incontinence and bladder leaking or retention. If I have bladder retention, that means that I’m going to have to cath myself so I can pee. It doesn’t mean it’s going to happen every time, but it happens a lot. And then leaking. We already have enough bladder leaking after you have so many kids. I was thinking, After all this, I don’t want to have to deal with any of that. For me, that was not the best choice.
The next thing was Indiana Pouch. I knew that was an option for me. The problem is [in] a lot of places, the doctors don’t know how to do it.
When you’re advocating for yourself, think about where you’re going to get your care. Because if they don’t know how to do certain procedures, they’re not going to recommend those to you even if they’re the best things for you. That’s left out because when you ask, “Can you do the Indiana Pouch?” They’re like, “We don’t do those here.” You’ve been having all your care there. Then sometimes we say, “Okay, I’m not going to do that one.”
Another reason why I went to City of Hope [was] because I knew that they did everything there and they may be doing some things that I don’t even know about. And if it sounds right, I’m going to be down.
Think about where you’re going to get your care. Because if they don’t know how to do certain procedures, they’re not going to recommend those to you.
I decided to do the Indiana Pouch. Great things about it. I can pee standing up. I have a problem with public bathrooms. And for now, there is no problem with a public restroom. I can go to the porta-potty. I don’t have to touch anything. Unless I have to have a bowel movement, I don’t have to sit down in a public restroom.
There is a risk of infection because you are putting the catheter in, the little stoma. People have different types of stoma. The one that I have is really low, below my bikini line, so I can wear a bikini and you can never even tell. Some people have [it] above the bikini line so that would show but they just put a waterproof dressing on it. Some people have it in their belly button, so they actually cath their belly button. For me, that wasn’t an option because I had another surgery [so] it wasn’t going to be a good choice for me. I didn’t think I wanted that anyway because some people end up with hernia and I don’t want to deal with that either.
I decided I would do the Indiana Pouch, so I just have a little catheter. It can fit in the palm of my hand. [When] I go to the bathroom, I just open it up. It’s all sterile. I can touch it on the outside and feed it in. I stand there, pee, take it out, throw it in the trash, and I’m on my way. It takes less than 10 minutes.
Had I waited, the cancer may have been to a point where that wouldn’t have been an option. It could have gotten bladder-invasive in the wall. These things grow fast. You need to have it out within 90 days.
When I made the decision to have my bladder out, I knew that I had 90 days to have my surgery because that might be a regrowth period and I didn’t want anything to grow back before I had my procedure. My husband and I had a trip to the Dominican Republic. I said, “As long as I can go on my trip, I’ll be ready to have my bladder out when I come back.” And that’s what I did. Five days later, I had my bladder removed.
When you’re having surgery, you never know what’s going to happen. What if something just didn’t go right? I told my husband, “We’re going to go on this trip. We’re going to enjoy and have the time of our lives because what if we don’t get a chance to do this anymore? I want to make sure that we have a good time.” And we did.
Fortunately, everything turned out well. I had a few little setbacks during my recovery period, but I would not change anything. I’m just so glad that I made this decision, other than having to go to the bathroom on a schedule. Every 4 to 6 hours, I have to empty my bladder.
Cancer Research UK / Wikimedia Commons
Choosing the best urinary diversion option for yourself
I thought about this. I didn’t want the bag so that was not going to be an option for me. I knew that if my other diversion failed, I could always go to the bag. You could always go to the bag later but you can’t go back once you decide you want the bag.
The other thing was if I have retention or bladder leaking, what [a] hassle that’s going to be. This is for the rest of my life. Who’s going to cath me when I can’t see down there? My husband? He won’t be able to see either. Who’s going to do it? But if I have the Indiana Pouch, if someone’s taking care of me, it’s really easy for them to take care of me. Someone else could do it [really] easily. It’s not difficult. They don’t have to go down there and try to find where to cath me.
I thought about a variety of things. I thought about the right now. I thought about the future. I thought about the things that I like to do. My husband and I love to go to concerts, outdoor venues, [and] festivals. Usually, there [are] porta potties involved. Is that going to be conducive to my lifestyle? What about when we travel? We like to travel. We like to go overseas. Is that going to be a problem? All of these things are manageable with my diversion.
It’s not just about living. It’s living your life abundantly and having the best life that you can possibly have.
Impact on intimacy and relationship
This is another reason why support groups are really important.
When they do a surgery of this nature, it’s major. They not only remove your bladder, but they remove your ovaries [and] part of your vagina because your bladder sits right on top of your vagina so there’s part of it that has to be removed. In some cases, they remove most of the vagina, especially if they think there’s a possibility that cancer has gotten through that. They [also] take out your appendix and lots of lymph nodes.
When you’re thinking about being married, young, and not having a vagina, that could be traumatic to your relationship. I never would have thought to ask but somebody in my support group brought it up. I talked to her and she became one of my close friends, too. When she had her bladder removal surgery, they removed all of her vagina except for maybe two inches, which [meant] that she would have to come back later and have a reconstruction of her vagina. I was like, “Oh no, that is what I’m not doing. I don’t have [a] muscle-invasive disease so it’s not out of my bladder. I do not want to have no vagina.”
I talked to my doctor ahead of time and said, “If I wake up and I don’t have a vagina, all hell’s going to break loose so we need to make sure that I wake up with a vagina.” She said, “We’ll do vagina sparing.” I said, “Yes. I want to make sure I have a working vagina.”
It was very nice that I was able to consult with the plastic surgeon. Another reason to go to these big cancer centers is [that] all these doctors are there. The plastic surgeon was there and he went through the procedure. I said, “If they get in there and there’s a problem, I expect to wake up and still have a vagina.” He said, “If they get in there and they have to remove everything, then I’ll either take part of your muscle from your thigh or from your abdomen and I will make you a vagina. You’re not going to wake up and not have a vagina no matter what.” I said, “You promise I’m not going to wake up with no vagina?” He said, “No. I will fix it.”
It seems like something small when you have cancer, but it’s not. It’s still quality of life. It’s living your life and living your life abundantly. I want it all. If I have to go through all this, I want to make sure that I’m going to have what I need to be happy and all those things.
One of the things I was able to tell Ebony because she was coming behind me was, “Make sure you talk to them about vaginal sparing [so] you don’t wake up like another friend [who] only [has] a two-inch vagina and nobody told you anything.”
There [have] been a lot of people on the site whose partners left them. They have cancer and their partners leave. Because mentally, they can’t handle it or this situation. They can’t wrap their head around the fact that their sex life is going to be very different.
This is important. This is quality of life. It’s not just about living. It’s living your life abundantly and having the best life that you can possibly have.
Having my own community of support outside of my own friends and family also took the pressure off of them.
Support
Connecting with people through cancer support groups
Around the time that I transferred to City of Hope, I joined a bladder cancer support group on Facebook. I found a couple of groups: one was women and bladder cancer [and] the other one was just bladder cancer itself. Connecting with people — that were going through the same things that I had gone through, that had gone through what I had gone through, so I could ask questions that could offer me support — was invaluable while I was going through my process. I’ve met some lifelong friends since I joined a group.
The first person I met was a woman in New Jersey. She was diagnosed with the same cancer that I have. However, hers was caught at an earlier stage so she did maybe one round of BCG, but she hasn’t had to do anything else. They’re just scoping her.
My son is a dancer and we went to New York for him to do an intensive. I also have another son and son-in-law who live there. We went to visit them and I was able to have lunch with my bladder cancer wife. I got to meet her for the first time. We had lunch together. You think we’ve known each other for years. It’s the best thing ever. I think we both cried. We got diagnosed weeks apart and we have been going through this journey together, supporting each other.
We exchanged numbers after meeting on Facebook and we just started texting each other back and forth. We became really fast friends and we’ve been friends ever since. Sometimes I find myself calling her before I call my husband. That’s why I said she’s my cancer wife. Before the scan, she’d call me. I call her before her scans. We comfort each other. It’s so funny. This black lady and this little Jewish lady and we’re just a year apart in age. We have just bonded and she is truly my sister.
Then, also Ebony. When Ebony came on to the bladder cancer support group, she posted something and there was something in the background of her picture that let me know that she was in the same sorority that I was in. I got so excited, especially because there [were] not very many black people at all in the support group. There’s just not a high percentage of black people that have bladder cancer.
I [sent her a message] and said, “You know, I think you’re in my sorority.” We started talking and then we exchanged numbers. We started texting each other and supporting each other across the country. She was at the beginning of her journey so it was really nice that I was able to talk to her, encourage her, and let her know what the surgery was like when I was going through the process. When I got to meet my friend, that really just solidified our relationship more.
You never know why people come into your life.
Importance of finding & connecting with someone in your cancer community
It’s very important. It keeps you going. It empowers you.
I call my nursing students baby birds and they call me mama bird. Some students have graduated [and] have gone on to have their own careers. One of which I became very close to and she ended up having breast cancer. I was really supportive of her during her breast cancer journey, which was before I had bladder cancer.
You never know why people come into your life. I really believe that our relationship was orchestrated by God so when I got ready to go through my experience, I was going through it with someone who had already been through cancer before.
When she was going through her cancer, we used to talk about [how] I was going to help her write a book. The book was going to be, “You’re Not Helping,” and the things that people say to people that have cancer. “You’re going to beat this,” little things like that. It’s like, “You’re not helping.” There [are] a lot of things that people say and they think that they’re helping, but they’re not helping.
There are things that you can say that would be helpful. That’s why when people pass away, a lot of people say, “I’m sorry for your loss.” And that’s not helpful. What can you say? “I’m praying that God will support you and will send you peace and understanding.” “Is there anything I can do?” There [are] the superficial things that people just naturally say and then there [are] things that people say that have meaning that really go there.
Some people don’t know what to say. I have a lot of friends [who] I didn’t even hear from when they first found out. I understand that it’s hard for you to wrap your head around my experience and what I’m going through but, at the same time, this is the time that I need you the most. Don’t disappear on me.
Having my own community of support outside of my own friends and family also took the pressure off of them. The things that I felt that they should have been doing to support me, I really didn’t need that because I had my community already that was there to support me and they were there to talk. They didn’t care about me talking about cancer for an hour.
The power of connecting with someone within your own circle
I felt a real sisterhood. I felt a special bond with her (Ebony, pictured left) outside of cancer, which was nice. In my sorority, we have a very small chapter where I live. Off the top of my head, we have lost maybe six sorority sisters over the last 15 years to cancer of various kinds: cervical, breast, liver, [and] pancreatic. It’s just so strange that so many people from one small sorority have all these cancers that take place. It’s really been rough.
One of my sorority sisters was diagnosed with stage 4 cervical cancer and she passed away. I started treatment in January, she passed away in September. [She] and I had been really, really close. I had taken her to the hospital before her initial diagnosis. To be going through that and have someone you love [and] close to pass away from that experience, it’s a lot. That’s why the mental health side is even more important.
Through this journey, I’ve lost a lot of people to cancer. In 18 months, four people close to me have died of cancer. One of breast cancer, one [of] cervical cancer — both my sorority sisters from the same chapter — and two first cousins that died seven months apart. One we buried last month, stage 4 colon cancer. He’s a year younger than me and then his brother died six months before that. Pancreatic cancer, weeks from diagnosis to death. These are my first cousins. We took baths together as babies. That was painful.
My cousin that passed away [from colon cancer], he and I are very close. We were only 13 months apart and we got diagnosed a week apart. We’ve been walking together through this, too. We’re both encouraging each other on a regular basis, talking to each other every week.
You can’t put 100% of your life into your healthcare provider’s hands all the time. Don’t have expectations that somebody else cares about you more than you do.
Words of advice
Listen to your body. If you feel like something’s not right, it’s not right. It doesn’t matter if they say, “Oh, everything’s okay.” You have to remember these things. If you die, they’re going to get another patient. The only people that are going to be affected by my death are the people who love me. And I love myself. If I feel like something is not right, I’m going to get a second opinion. Why? Because I’m entitled to one. And that’s what I’m going to get.
I’m entitled to do research and I’m going to do whatever research I need. Again, going back to, “The Lord helps those who help themselves.” Sometimes we ought to go out and help ourselves. As a provider, I care about all of my patients. I do the best I can do for them. But I am a human being as well and I don’t know everything. You can’t put 100% of your life into your healthcare provider’s hands all the time.
Every situation is different. If something doesn’t feel right to you, something’s probably not right. You’re obligated to find out so that you do feel right about whatever it is. Don’t always listen to what everybody else does. You have to do what’s right for you. Get all the information that you possibly can and then decide what’s best for you. You’re the one that’s going to have to live with your decision.
I couldn’t let anybody else make this decision for me as to what type of diversion I was going to have because it was my life and I’m the one that’s going to have to deal with it. No one else. No one else cares how I pee. They may have an opinion about it, but they’re not the ones cathing. They’re not the ones getting up in the middle of the night. They’re not the ones that have to see if they have an infection or not. They’re not. It’s me. I’m the one.
Put yourself first, whatever it is that you feel. If you feel that something’s wrong, then usually it is wrong. Don’t have expectations that somebody else cares about you more than you do.
Follow-up regimen
Now that the bladder is gone, I don’t have to worry about bladder cancer but I’m going to be monitored for the next five years. Every three to six months, they’ll scope my pouch.
After five years, I’ll be monitored every year for the rest of my life. Scoped and probably CAT scan to make sure that there’s no recurrence there or anywhere else. And that’s a blessing to me.
Do what’s right for you. Get all the information that you possibly can and then decide what’s best for you. You’re the one that’s going to have to live with your decision.
Symptoms: Irregular occurrences of seeing streaks of blood in urine, specific type of pain when bladder is full, unexplained weight loss, urinary urgency, malaise, fatigue Treatments: Chemotherapy (gemcitabine), surgery (TURBT: transurethral resection of bladder tumor)
When it comes to cancer, the truth is different people need different approaches so equity refers to people getting what they need based on what they’re presenting with. That distinction is really important.
Dr. Kim Rhoads with her family, pre-pandemic
What drew you to medicine?
Stephanie Chuang, The Patient Story: What initially drew you to medicine and what drew you eventually to the area of cancer?
Kim Rhoads, MD, MS, MPH: Before we had the DEI language, I was in one of these pipeline programs in 1985 and 86. My mom happened to work at the School of Medicine at UC San Diego and she was in administration. They used to call her The Oracle. She was friends with the woman who started, I would argue, one of the first pipeline programs for underrepresented groups in medicine.
At 14, I worked in a lipid metabolism lab at UC San Diego for two summers in a row. I remember telling my mom, “Don’t get excited. I’m not going into medicine.” But the money was really good.
People in the lab took an interest in me and I liked science so it was fun for me to be in a laboratory. I already had a little bit of experience and the folks in my lab encouraged me to think about medical school. I was not thinking about that.
I majored in linguistics. I was not interested in being in the rat race. But as a junior in college and thinking about what a linguist does for a job, I decided to pursue the coursework to go to medical school.
I knew that it was a big commitment and that I needed to be making a conscious choice about going to medical school.
What personal experience really shaped you?
Stephanie, TPS: You were primed from a very young age, being in a lab at 14. You pursue medicine and, at some point, something personal happened that really shaped you.
Dr. Rhoads: I’d taken all the coursework [for medical school], but I decided to take a year off between college and medical school. Because I had worked in a lab, I was referred by my lab PI (principal investigator) to a lab in Washington, DC. I decided to move for a year [to] take some time and figure out, “Is this really what I want to do?” I wanted to take some time to make a decision [and] casually take the entrance exams.
I worked in an HIV lab at the time and my family is from Virginia, so I had a car. I would drive to Virginia on the weekends and spend time with my favorite cousin and my favorite aunt.
During that period, once I decided to apply for medical school, I was talking to them about interactions black people have with the healthcare system. My aunt was expressing that something was missing from her interactions with healthcare. I remember distinctly, she said, “I just want to be able to go to a clinic where when you walk in, people know your name.” But what I realized is she was asking for community. She wanted to feel like she was part of something, not like she was going into a situation where she would be judged for the choices she had made or how she lived her life.
I don’t want to be on a treadmill and then get to the end and find out that this isn’t what I really want.
What I didn’t know at the time was she had breast cancer. Nobody in the family knew. By my second year in medical school, the cancer had become so advanced she was not even offered surgery. She was treated with chemotherapy and died in the hospital. All contrary to having [a] choice, being supported, [and] feeling that warmth people need in a vulnerable time.
Because I’m [a] first-generation college graduate and [the] first doctor in my family, I thought, “Let me make a phone call. Maybe I could translate,” because I know that medicalese is being spoken and that people are probably not understanding what’s going on. When I called the hospital in Virginia, I was given a little bit of information. I asked if there was a specialist involved and was told, “General surgeons take care of breast cancer and we’re not operating anyway because the tumor is too large.” A lot of dismissive interaction.
By the end of the conversation, the person on the other end of the phone said, “Are you a nurse?” Because clearly, I had enough medicalese to get by as a second-year medical student. I said, “No, I’m a medical student,” and they hung up on me. That really stuck with me. This is not how it’s supposed to go, especially in that vulnerable time. That set me on a course of my original pathway in research, understanding the experiences of black women facing breast cancer and [their] relationship with surgeons.
What is that relationship like? Is it kind and caring? Did you feel taken care of and that somebody was looking after you? I remember one of the questions was, “Did your doctor make a U-turn at the foot of the bed?” It got me thinking about the fact that she never got radiation, which she needed based on the description of the tumor. That’s when I started to look into and think about it.
Many years into my surgical residency, comparing the different settings I had trained in — a Kaiser, a private institution, the academic center, the safety net hospital, the Veterans Administration — and seeing all kinds of different care provided for the same problem and making me wonder: Does this have anything to do with the difference in resources that are available? Going back to my aunt and asking the question: Was there radiation available at that hospital? As it turns out, there wasn’t so that’s why she wasn’t offered radiation. That started to form how I think about disparities because my suspicion was that you get the kind of care you get based on the institution that you select. And that brings us back to our question of inequities. Are people able to get what they need based on where they choose to get their care or where they’re forced to get their care based on their circumstances?
What is health equity?
Stephanie, TPS: What does health equity mean, Dr. Rhoads? We hear this now constantly. We hear about DEI in healthcare. What does that actually mean on a human level?
Dr. Rhoads: Health equity refers to everybody getting what they need. I think we started [with] liberation movements with the language of equality. But when it comes to cancer, the truth is different people need different approaches so equity refers to people getting what they need based on what they’re presenting with. That distinction is really important.
The word is now being overused. It is now being substituted for disparities. When we put the word inequity on top of disparities, what people are trying to refer to is the fact that these are addressable because if something is inequitable, it means it can be shifted towards equity. But by putting it over and covering over disparities, what we are effectively doing is trying to erase a state of being that exists as a result of inequity. It is the final common pathway of inequity. You end up with disparities. As long as we have inequities, we’re going to have disparities. But what we want to stay tuned for is the elimination of disparities by intervening to promote equity.
Stephanie, TPS: At the end of the day, words really matter and sometimes, it’s not really clear how powerful they are.
As long as we have inequities, we’re going to have disparities. What we want to stay tuned for is the elimination of disparities by intervening to promote equity.
What have you learned since then?
Stephanie, TPS: You were very conscious of this from the very beginning, even before you officially started seeing patients and becoming a surgeon. In the many years since then, what have you learned? Has it changed over time or are we still at the same place, depending on where you go for care?
Dr. Rhoads: Are we still there? Yes. The answer is yes. Most people don’t know because we don’t have a Consumer Report on what hospital you want to go to. There is website [for California] – CalHospitalCompare.org. You plug in your zip code, find the nearest hospitals, and look at their quality ratings. There were some efforts to try to promote better outcomes by ranking quality and letting providers know where the high quality is, letting the insurance companies know where is the high-quality care. There were several studies around 2005 [and] 2006 that came out showing that nobody was using those rankings. Referrals were being made based on personal networks.
My suspicion was that you get the kind of care you get based on the institution that you select… People don’t know that where you go determines what you get.
Whenever you talk about personal networks in [the] field of higher education, you know that those networks are going to be segregated. You can imagine how that can play out. Especially with the history in this country, for example, of black doctors only being allowed to train at certain institutions, only being allowed to practice in certain areas and in certain hospitals, [and] not being allowed to join professional societies with white physicians. That then is going to determine where your patients can go to get care.
California hospitals are still segregated by race [and] ethnicity but also by insurance status. That all came from policy, redlining, exclusion, and segregation in all of those layers — education and where you practice. That’s where patients are able to go.
Have things changed over time?
Stephanie, TPS: What you described, people might think, “Oh, that’s from before,” but what you’re saying is it’s very clearly still here.
Dr. Rhoads: It is. My aunt was treated in a safety net hospital and that’s the hospital that has to take you as a patient, regardless of your ability to pay. Your county has designated where those hospitals are. Those hospitals largely serve patients who have no insurance or Medi-Cal (when we’re talking California) [or] Medicaid (when you’re talking nationally).
If you rewind back to [the] ’64, ’65 civil rights era when Medicare and Medicaid legislation [was] being advanced at the federal level, the American Medical Association — which was very exclusive at the time, did not allow participants who were of color — [was] advocating against these policies. I don’t understand why, that doesn’t quite make sense to me. But the National Medical Association, a professional society created by black physicians out of exclusion, [was] heavily advocating for the passage of this legislation, in particular Medicaid, because they knew that those dollars were going to come to the hospitals where they were working and would have the opportunity for their patients to be covered by some kind of public insurance.
Dr. Rhoads with San Francisco Supervisor Shamann Walton
Now, what you’ve got across the country are hospitals that serve a disproportionate share of patients who have Medicaid or no insurance at all. What you’ll find is those tend to be your safety net hospitals so their revenues are not that high because they’re being paid by an insurer that doesn’t reimburse at a high rate. For example, Medicaid pays somewhere between $0.05 and $0.15 [per] dollar. If your total hospital bill is $10, you may get $1.50 back to the hospital to reinvest in their plants, property, and equipment.
Cancer care is expensive. A radiation machine costs money. A specialized CAT scanner costs money. If your revenues are low, those are not the investments you’re going to be making. That’s how you start to see a segregation of patients of color using high Medicaid hospitals for cancer care and then having to get whatever is available. That may not be the high-end PET scanner, may not be the CAT scanner that can slice the pancreas into thin enough slices that you can see a teeny little tiny tumor. If you need radiation and that hospital doesn’t have some kind of agreement with a place to provide radiation, you’re not getting radiation. That has a direct impact on outcomes.
When we looked back in about 2014 [and] 2015, we used publicly available data and asked which hospitals provide care to a high percentage of different racial and ethnic groups. We had what we called white-serving, Hispanic-serving, black-serving, [and] Asian-serving.
The one very notable thing is that white-serving hospitals do not overlap with black-serving hospitals and that they only overlap with Asian-serving hospitals. Hispanic- and black-serving hospitals are completely segregated. There are hospitals in California we can show you that have had zero black patients over a period of 10 years.
It really is segregated in a way that has not been amplified. We were looking at what was called minority-serving, so that was any non-white-serving hospitals. Those do not overlap with white-serving hospitals either. It is a pretty segregated system in California.
Across the country, minority-serving hospitals are black-serving hospitals. In California, minority-serving hospitals are Latino- or Hispanic-serving hospitals. Those are just some ways that we have looked at the data to understand the landscape of segregation that is still persistent in our healthcare system in a very liberal and very diverse state.
We used publicly available data and asked which hospitals provide care to a high percentage of different racial and ethnic groups… It really is segregated in a way that has not been amplified.
Why do people go where they go?
Stephanie, TPS: Sometimes, when we talk about these things, about race as a social construct and not just biology, I thought a lot of this is socioeconomic. If you live in a certain area and have limited means, you’re limited in terms of options. The most accessible hospital may be a safety net hospital. But you’re saying this is down racial lines. Can you talk about that? I know there’s another layer there. We talk about socioeconomic, but it’s very clear what you just described.
Dr. Rhoads: Socioeconomic factors — like income, education, [and] employment — track along racial lines as well. It’s hard to pull them apart.
We did publish a series of papers asking the question, “Why do people go where they go?” As you suggested, maybe you just live near the safety net hospital so that’s where you get your care.
We asked racial and ethnic minoritized communities [and] populations in California, “Would you use a National Cancer Institute-designated comprehensive cancer center?” That’s where the best outcomes, all the high-quality services, [and] all the specialists are. Then we also asked, “Would you use a high-volume hospital?” Because practice makes perfect, right? If you’re taking care of a lot of cancer, then your outcomes tend to be better. We’ve shown that that’s true.
We started off by asking, “What is the median travel distance that people will go in California to get colorectal cancer treatment?” We found that the median travel distance was five miles. Now there are all kinds of discussions that can be had about that. Five miles doesn’t seem like a lot. If you have a car, that’s short. If you’re on the bus, it might take longer. If you don’t have the access to either of those things, five miles is impossible.
We used that as a marker then we said, “What proportion of each racial and ethnic group lives within five miles of a National Cancer Institute comprehensive cancer center or a high-volume center?” It turns out that racial and ethnic minorities are the groups that live closest to these centers because they tend to be in non-rural areas in California. They live closer.
Then we said, “Of those who live within five miles, are you using them?” A lower percentage of racial and ethnic minorities who live within five miles of an NCI center or of a high-volume center were using them.
What’s going on here? Is it because some people are actually going where they can get better quality and going to a safety net hospital or high Medicaid hospital? Because that’s where the clustering of racial and ethnic minorities [is]. We asked, “Is this because of insurance?” The answer is no. Insurance did not move the needle. Insurance was not as statistically significant in its correlation. It did not explain this difference.
Then we asked, “Is it travel distance?” We counted everybody in because some people will be further than five miles out and travel distance did make a difference. So that was comforting because it makes sense. It has face validity.
But then we asked, “Is it possible that the neighborhood characteristics determine where you go?” We used education as the socioeconomic factor and it overrode travel distance. It neutralized the effect of travel distance. Travel distance did not matter. What mattered was [the] neighborhood education level. I know when I give this presentation on this series of papers, a lot of people will say, “I knew it.” They just don’t know better. But lots of people know better and still don’t pick the highest quality hospital, including insurers [and] referring providers.
The way I try to explain this is we looked at neighborhood-level education. It’s not the education of the individual; it’s the characteristics of the neighborhood. What we say is you are like your neighborhood. You’re like your neighbors in terms of your health behaviors because that is a marker of socioeconomics: What’s your neighborhood like? In your neighborhood, you’re in range with everybody else because you can afford to live there [and] you chose to live there. What we’re saying is neighborhoods develop patterns of where they get their care and that trumps quality and travel distance.
So that’s where my aunt went. If that’s where my grandma used to go, where my mom went, then that’s where we’re going because that’s our hospital. The problem is that if you peel back another social determinant — which is redlining and say, “Where are people allowed to live?” — then you become like your neighbors and you establish a relationship with the hospitals that serve that neighborhood. And those tend to be the safety net hospitals for racial and ethnic minorities.
Stephanie, TPS: Wow. You did ask all of the important questions. If not this, then what? While you were talking, I did think, “Oh, it must be the insurance.” And it’s not. The community events build a bridge of true understanding, not just, “You don’t know any better. You should be going here and this is why.” None of that.
What’s embedded in that history is a relationship and what that offers an opportunity to do is to have a different relationship.
Dr. Rhoads with her family
What are the solutions?
Stephanie, TPS: What are the solutions?
Dr. Rhoads: What’s happened is a relationship has been developed, whether that relationship is for better or for worse. You might not be aware that you could get better outcomes somewhere else because that’s always where everybody’s gone. The crazy things that happen there that don’t make sense are perfectly acceptable because that’s the relationship and that’s where you’re talking about history.
What’s embedded in that history is a relationship and what that offers is an opportunity to have a different relationship. But what about now? And what about going forward into the future? That is, I would argue, the foundation of Umoja Health — building a relationship and not building a relationship like it’s a destination. Understanding that relationships evolve over time.
Trust is the equity of relationships. You build it up as you go through good and bad things together. Not just all good things, but the bad things, too. I think [what] we have forgotten in medicine, in healthcare, is our own humanity. We’ve forgotten that we are also simply people. I don’t care if you’re green, purple, brown, [or] whatever. That’s the one thing I have in common with everybody. We need to be making relationships with communities that are around us in the same way we would be thinking about and making relationships with our friends.
We don’t have to tell them all our personal secrets but we shouldn’t be thinking about those relationships as, “I have all the resources and you do not.” There’s that way in which we otherize the patient. It happens in medicine, just in that doctor-patient interaction. The doctor is coming with some information. The patients come in with a lot more information than the doctor could ever have because they’re living in that body every day. But there’s some way in which we exalt the doctor, [as if] the doctor could never be the patient, which is a ridiculous proposition.
Similarly, as institutions, when we partner with [the] community, we otherize them. There’s a lot of paternalism. There [are] things that we want to hide and don’t want to say. Failing to recognize that.
If we came with transparency and said, “These are the hard parts. Let’s work on the hard parts together,” that is going to build trust faster. Then it all looks good and everything we do is great.
We need to be making relationships with communities that are around us in the same way we would be thinking about and making relationships with our friends.
How can we start the relationship on the right foot?
Stephanie, TPS: What are some things people could say to be more transparent and kick off the right conversation to lead to a good relationship?
Dr. Rhoads: First of all, it’s an acknowledgment that this one interaction is not our whole relationship. This is the beginning. I will see you again. In the process, as a human being, I will be making some mistakes. You will be making some mistakes. We will have some miscommunications. But the commitment to the relationship is that we will work through those together. I think that’s what can happen in the doctor-patient interaction.
In the institutional interaction, there also needs to be some humility. We talk about truth and reconciliation. We want to do the reconciliation; we don’t want to do the truth. That’s the hard part. Part of that is getting out of the building and being in community in whatever way you can. You don’t have to be in community as the doctor. Be in community just as an individual human, experiencing life in the same geographic territory as other people but obviously having a different experience. I think that’s what helped Umoja move along.
I also think people buy into Umoja and link into Umoja because even though it’s focused on COVID for the moment, it came out of our relationship with our partners around cancer. They asked us specifically to focus on COVID when the pandemic hit and we said we will do that because we committed ourselves. Year-round — not just when cancer is a problem. Non-transactional — we’re not here just because there’s a study and we need you to get in our study and diversify our study. We’re here because we want to be in partnership. It’s year-round, non-transactional community engagement.
I don’t think people really thought about the non-transactional part. They think about being nice. It’s not about being nice. It’s about being on a shared mission and sticking around when times get tough.
We need to build relationships and that’s where you’re going to get people wanting to be part of the solution.
When you get caught in a problem that gets posted on social media of your institution or a representative of your institution doing something that none of us want to see happen, what needs to be done is a confrontation of that behavior, an admission that that was not only wrong but is not what we are intending to do, and to sit with the community that’s impacted and listen as they express their frustration. Then figure out together how you can take action to avoid it in the future. It doesn’t mean that we’ll be perfect. Again, there’s a disclaimer. We’re going to continue to make mistakes. But what you’re committing to is continuing to work together. That’s the investment that is absent in all this DEI and DEIA conversation — the commitment to humility and transparency is what is always, always missing.
With Umoja, we’re out in the community. I’m wearing an Umoja T-shirt just like the volunteers who are there, just like any other medical provider volunteer who comes out — we all look the same. It gets me back to what my aunt was looking for. She’s looking for her neighbor to be at the clinic, to be the person to welcome her. When [you] take away that self-exaltation, holding ourselves more important than other people because we have special knowledge, you end up with the ability to connect with people. For the person coming into that setting, you also get rid of the feeling like they’re going to be judged for their life choices. If they feel like they’re judged, they’re going to lie about their life choices. They’re not going to be totally forthcoming. They’re not going to feel that they have permission to be fully who they are. And that’s where I think we’ve gone wrong with all of healthcare.
We do not train healthcare providers [to see] people in their full humanity without judgment. We provide rules of what’s good and what’s bad, and then you judge the people who are doing it wrong. Then if you layer racism in there, you have a quicker judgment [of] different people because there is a belief that they are inherently not good or inherently better than other people. Racism can go both ways. It’s not just thinking people are bad. It’s any judgment at all.
We need to build relationships and that’s where you’re going to get people wanting to be part of the solution, wanting to promote your study, wanting to participate in your study, because that’s not the primary thing you asked. The primary thing you asked them for was a relationship.
Racism can go both ways. It’s not just thinking people are bad. It’s any judgment at all.
How can small steps lead to big changes?
Stephanie, TPS: What you just said is really powerful. This piece about judgment is huge and that’s what you cut through when you started Umoja. You were in the community. You were leading. You were modeling. Something as simple as not wearing a UCSF shirt. It’s a simple decision but it sends a message.
Because of the timing, COVID is where a lot of the attention was paid. Can you give an example of how what seems like small steps and small decisions can actually really change someone’s mind if you really want to get them involved?
Dr. Rhoads: I’ve been doing community engagement work since 1993 and in 2020, I had a number of eye-opening revelations.
We started Umoja as United in Health District 10. It was an offshoot of Unidos en Salud and I always have to give credit to Diane Havlir for the brilliance of bringing COVID testing into the community when people didn’t have access. We were working in Bayview, southeast sector San Francisco — a large African American population, relatively speaking to the rest of the city — and then Sunnydale where we picked up Pacific Islander communities and then Latino population all throughout.
I remember having a conversation with my department chair and saying, “It really strikes me that the tents for the testing efforts were all just white tents. There was no signage anywhere that said Public Health Department or UCSF and I think that’s actually why people were willing to come.” That was my suspicion.
Then to bolster that, a participant I was speaking to — I had no idea she had gotten tested at our site — brought it up and said, “The only reason I answered your survey questions was [that] my neighbor was the person asking the questions.” Throughout setting these pop-ups, we would track the volunteers who are working the site: Do they match the demographic distribution in the neighborhood? Are we capturing the neighborhood people? Are we engaging the neighborhood people? So that was a big deal when she said, “I only answered because it was my neighbor. Otherwise, I wouldn’t answer any of those questions.” The trust was already there. The relationship was already there so that gives us an advantage.
Engaging people in the process changes how people perceive who you are.
Once we became Umoja Health in late 2020, people were coming out to work together who had never worked together before. I didn’t know because there were these community-based organizations [that] would come together under this umbrella. Thank you to the Brotherhood of Elders Network who opened the door.
We would get out into the field and I would have to say to people, “I know you’re really happy to see people, but please don’t hug each other.” It’s still COVID. There was joy inside of the pandemic and that joy was for us, by us, or FUBU work. Community saving the community. Community delivering the services. Community being valued for what they bring to the table, which is a relationship we don’t have.
That relationship translates because what you could see happening in the informational sessions we were doing in between the service events was people really understanding COVID in their own terms, in their own ability, to explain why social distancing mattered, why wearing a mask mattered, what is exponential spread… People just started to get it on their own. And that was huge. I realized these organizations suddenly are working together and have networks that we haven’t even seen.
By participating in delivering the services [and] setting up the site with COVID safety in mind, these people are going to go home to their families, they’re going to be in their social settings with their friends, and they’re going to be talking like this because it’s part of what they’re doing. It’s not because they’re now a doctor. It’s not anything formal. It’s the informal influence, the informal authority that they have within their groups that they could use to start promoting uptake and participation in COVID mitigation.
By the time we finished our first run of Umoja in the fall of 2020, African American people had gone from being the lowest testers in the county to being the highest testers in the county. We didn’t even work the entire county, but we had people in our informational meetings taking that information to their networks. People started really emphasizing and highlighting as credible messengers.
Those are examples of how engaging people in the process changes how people perceive who you are. Now, we get a lot of calls like, “Somebody has cancer. We need a second opinion. How can we get into UCSF?” People who would not have otherwise even considered talking to UCSF. These are people from our Umoja community, COVID-focused, calling us about cancer.
It just goes to show that the relationship is what matters. They perceive that we care because we’re willing to come out, to employ community people, [and] to make spaces for the community to be an active and primary part of the solution. We’re not looking at people as needing transportation and child care or you’re poor and you don’t know anything and we’re ministering to you. No, we’re saying we need what you know because that’s going to help us get the information out and that is what is going to help move us truly toward health equity.
Stephanie, TPS: Everything that you just described is so powerful. Those were really incredible examples. At the core of it, it’s about really building real relationships. People can feel it. They know. They know when you’re approaching them and they feel like, “Are you coming in thinking you’re going to save me?” Let’s go in equally because that’s what we are.
How can we avoid otherization?
Stephanie, TPS: For people who feel, “Well, that’s the other community,” what’s the message about why it’s so important for everybody? We’re not only talking about lifting black Americans or Latino Americans or Asian Americans or Pacific Islanders. What is that message to people who don’t get that part?
Dr. Rhoads: Otherization is really central to how I think about any of the work that we do in any community. You can be a short white man who is not aggressive and be otherized. There are a million ways to be otherized. What I go back to is the way to avoid otherization is to recognize your own humanity because that is the link you have to every single other person on the face of this earth. And I guarantee if you spend more time, you’ll find other similarities and other commonalities so you don’t have to separate yourself in that way. I think that’s core to what the problems are in healthcare.
What I would also point out is Umoja Health in Alameda County focuses on the African American community but in San Mateo County, it focuses on the Pacific Islander community and the Latino community. It’s whoever comes to the table. [It] really is people-powered. It is whatever resources. It is the actualization of stone soup. Whatever you can bring to the table, that’s the soup we’re making and that’s the soup that we’re having.
The way to avoid otherization is to recognize your own humanity because that is the link you have to every single other person on the face of this earth.
If what you’re bringing to the table is your ability to access resources from other spaces, even better, but it allows an opportunity for everybody to fully be who they are and not have to be other. We’re in this together. Everybody is susceptible to COVID. Everybody can actually come to the table and not be judged, “Well, you’re not bringing anything and so we’re here saving you.” No.
You can volunteer. You can encourage people to come to the site. You can educate people with what you’re learning in the meetings. You can invite people to the meetings. Everybody can contribute something. Until we get a handle on that, on believing that, and on operationalizing that, we’re going to be stuck.
For now, the paradigm we have is some people are better than others and have more than others and they need to give to or minister to those who have less. It discounts the importance of the other. Baba Arnold Perkins, who used to be the director of the Department of Public Health in Alameda County and who is now the chair of the Community Advisory Board for our cancer center, says, “Everyone is a piece of the puzzle and every piece is important.” And recently when I talked to him, he added to that. He said, “And every piece is equally important.” And that’s what I think we really need to recognize.
Dr. Rhoads with Baba Arnold Perkins (rightmost)
Think about doing a puzzle. Get a 5,000-piece puzzle. You’re just tooling along. It’s looking really good. A piece falls on the floor and you don’t notice until you’re done. When that piece is missing, it ruins the whole puzzle because it’s missing and it’s only one piece out of 5,000. So every piece is equally important.
Everyone is a piece of the puzzle and every piece is equally important.
Baba Arnold Perkins
How can we deal with the lack of trust?
Stephanie, TPS: Some people say this lack of trust or even distrust specifically when we’re talking about the black community, as the generations go on with younger people, slowly that’ll take care of that. In your experience, you met a range of people in terms of age with the same lack of trust.
Dr. Rhoads: Trust builds at the pace of the relationship. Think about this: If you don’t have a relationship, why would you expect to have any trust? You shouldn’t. Think about your own personal relationships. You just met somebody. You don’t automatically trust them. It takes some time of building up how you work together [and] how you relate to each other.
Over the generations, you might think [that] young people are unaware because this happened so long ago. But actually, the young people are where it’s at because their minds are flexible. They’re open. They’re willing to see disparate treatment, privilege, and access to opportunities. They can see it.
What I have observed is that for the younger people, it makes them uncomfortable. They want things to be different. We did hear the vaccine was developed too quickly. There [are] nanobots in it. Don’t trust the government. We saw that across age groups — no question. But I do think that there’s an opportunity because young people are now interested.
Climate change is another disaster that adults are creating for them. Racial discrimination. Killings of various kinds of people who are at a disadvantage at the hands of police. They’re seeing that for what it really is. I don’t hear from younger generations trying to smooth it over and say it’s just miscommunication. That’s definitely something that happens in generations who maybe don’t want to hold the responsibility for what we have created. The young people didn’t create it so it’s easy to critique it.
It’s not really a lack of trust; it’s an appropriate response to a history of untrustworthy behavior. There are reasons to be suspicious, which is why it matters to be in community, outside our walls, because that’s where you can start to break down things that happened in the past because now, something’s happening in real-time.
It’s not really a lack of trust; it’s an appropriate response to a history of untrustworthy behavior.
Dr. Rhoads with cancer survivor Norman Tillman
What are the next steps?
Stephanie, TPS: There are so many cancers that disproportionately impact black Americans compared to other groups. I know it’s across health care and life, really. But in cancer specifically, what do you see as the next real feasible steps? Bringing the hospital out into the community, really showing that we care, and trying to build real relationships. Are there additional steps that we can take collectively to help address the inequities and the disparities?
Dr. Rhoads: If you address the inequities, you’re going to get rid of the disparities. I’ve written some papers to look at [the] delivery of care and when you get the right care for the right stage of disease, the differences by race [and] ethnicity go away. We’ve shown it in colon cancer, acute myelogenous leukemia, gastric, and pancreas cancer. We know that if you address the inequities, you’re going to get back to differences. And differences are okay because innately, we are different from each other. We’re not going to live the same number of years. Those differences are acceptable. It’s the disparities where you didn’t get what you needed and therefore you’re dying early — that’s what we’re trying to eliminate. Addressing inequities is going to get us there.
There is a process that is in play. Building the relationship is the beginning of the process. What happens when you’re in relationship with [the] community is the questions start to be centered around the community instead of centered around institutionalists. Because we’ve made the barrier between the institution and the community more porous, we can actually receive input and guidance on what research questions should we be asking.
What are people observing on the ground that we’re unaware of and are assuming a sterile condition under which these disparities are happening? For example, higher rates of cancer in younger people. What do we know about what’s happening on the ground? Often, we don’t know anything. We assume everything’s equal.
The next step is having the community influence the research questions. We’re working with Cancer Grand Challenges, which is an international award to the United Kingdom and the US. The National Cancer Institute and Cancer Research UK combined to fund 11 projects. I’m involved with one of them and the question is about cancer promotion. Are there environmental exposures that cause a mutation you’re already carrying that your body is keeping in check? We are all carrying millions of mutations right now, but we’re not a million cancers. Are there environmental exposures that are selecting a mutation and saying now you’re going to start growing, you’re going to be a tumor?
I think that kind of research is going to be so importantly informed by advocates and community partners because they’re going to be able to tell you stories about what’s happening in their neighborhoods. When we see cancer clusters, we can start asking very specific questions about cancer promotion in those specific spaces. Again, that’s another example of centering the community in the research question. We can apply our scientific approaches, which are all very cutting-edge, but we’re applying them to questions that are directly relevant to people who are living regular lives outside of our institution. The next step is developing questions that really hit home so that our results are relevant to the people that we think we’re trying to serve and be in partnership with.
If you address the inequities, you’re going to get rid of the disparities… you’re going to get back to differences.
Differences are acceptable. It’s the disparities where you didn’t get what you needed and therefore you’re dying early — that’s what we’re trying to eliminate.
Sam was diagnosed with Hodgkin’s Lymphoma at 38, which relapsed within a month after ending treatment.
She shares the complications of being a doctor-patient, the importance of being honest with your medical team and having clear lines of communication, and the delicate balance of advocating for yourself.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Name: Samantha S.
Diagnosis:
Hodgkin’s Lymphoma
Symptoms:
Fatigue
Cough
Fast-growing lump above the collarbone
Treatment:
ABVD chemotherapy (Dropped Bleomycin after 2 cycles)
Relapse Symptoms:
Feeling unwell
Pulmonary symptoms
Lump reappeared
Treatment:
Brentuximab
Cyclophosphamide
BEAM chemotherapy
Autologous bone marrow transplant
I love my doctors and my healthcare team, and I also need to be able to ask questions about my life
It was so tough in the beginning because it was one year into the pandemic. I was really tired… It was such a hard time [with] so many hats to wear so I just discounted my fatigue
Pre-diagnosis
Introduction
I am a mom of three adorable kids ages four, nine, and ten — almost 11. My husband is amazing. We’ve been together since before medical school. We’ve been buddies since the beginning.
I’ve been a long-distance runner for many years. I love jogging, running, baking, hiking, playing guitar, and painting. Some of those things I did later on when I had my transplant at Stanford Hospital.
I love being a doctor in my community, too, when I’m feeling better.
Initial symptoms
It was so tough in the beginning because it was one year into the pandemic. I was really tired, having trouble getting past 8 o’clock at night with bedtime and bath time, and then getting back to patient notes after the kids were sleeping. I thought, Every doctor is tired right now, especially doctor parents and even just parents that are homeschooling their kids during the pandemic. It was such a hard time [with] so many hats to wear so I just discounted my fatigue. That went on for maybe a month or so, maybe two months.
I also had a cough, predominantly at nighttime. There had been some wildfires in the area where I live. I had a ton of excuses for why I was coughing. I’d be coughing so hard that I slather myself in Vicks VapoRub and take steamy baths in the middle of the night to try and calm my breathing down, thinking, I must have some kind of asthma or reactive airway. All these justifications [for] why I wasn’t feeling well and have these symptoms.
I started getting a rock-hard, rapidly growing lump right above my collarbone. Then I knew. I even said to my husband when I started to feel it, “I think I have lymphoma.” I specifically said lymphoma. It was just so classic to me in my mind.
Shortly after, I put it all together — cough, fatigue, and this lump. This doesn’t feel like a benign lymph node. This feels like I have a rock that’s coming up above my collarbone into my neck area.
Within a week, there was a difference in [its] size. It just had all the features of a lump that’s concerning. A lot of people don’t have rock-hard lumps — they have more rubbery lumps — but I just knew I had to get it checked out.
Shortly after, I put it all together — cough, fatigue, and this lump. This doesn’t feel like a benign lymph node
The process of getting diagnosed
It was really scary. First, finding the time to get an appointment, doing the dance of, “Am I imagining these things? Is this really something worth taking time off work for?” I want to save my sick time for my family and things going on. Logistically, it was tough.
Being a doctor, I knew that I had a left supraclavicular node and I knew exactly which node it was — Virchow’s node. I was hoping that it wasn’t that.
One of my PCPs at the time ordered a thyroid ultrasound saying, “It could be a thyroid nodule; it’s probably [a] thyroid nodule.” In my mind, even though I thought this isn’t, I think they were hoping that it was a thyroid nodule and I was hoping it was, too.
I was able to get a thyroid ultrasound. When I was in the ultrasound suite, the ultrasound tech said, “Your thyroid’s normal,” and I could sense a “but” there. I said, “So what’s going on? Can you just give it to me straight?” She said, “I’m a tech. I really can’t diagnose you with anything but see these?” She turned the ultrasound probe. I looked at the screen and went, “Ugh.” It looked bad, like some kind of tumor or mass. Then I said, “That looks like tumors or masses.” And she said, “Yeah, it does, but I’m not a doctor.” She was very professional, given the situation. It’s so tough.
It looks like tumors…
I called one of my friends at work — another doctor — crying on the way home, saying that it looks like tumors. She ordered a chest X-ray for me and I got the chest X-ray before my clinic day. I then went straight to my office, opened my own chest X-ray, and saw that not only were there masses near my collarbone but there were masses in my mediastinum — the middle of [the] chest cavity. It didn’t look right. It was like it was somebody else’s chest X-ray.
I was totally numb. I couldn’t even process that that was mine. I walked into my friend’s office next door — an amazing nurse practitioner — and said, “I think I have cancer. I just opened my chest X-ray and [there are] masses and I have lumps in my neck. I’m pretty sure I have cancer.” I said it with this blank look on my face. Then I said, “Okay, I’ll go see some patients now,” and just went on about my day.
I was completely in shock and happy to focus on everybody else and not myself because that was just terrifying. I saw patients all day and then over the weekend, things evolved. I decided I better take some time to figure out what’s going on with me. I probably shouldn’t be seeing patients while I’m going through this. And I’m glad I took that time during the diagnostic process.
I was totally numb. I walked into my friend’s office and said, ‘I think I have cancer…’ I was completely in shock.
Diagnosis
Getting the official diagnosis
This is where my angst as a patient started, I think. After having that ultrasound and chest X-ray, I had some CT scans done that confirmed everything going on in my chest.
Next, you need tissue. [There are] generally two ways to get a biopsy in the head-neck area — interventional radiology [and] head and neck surgery. I was initially referred to head and neck surgery for a video visit to look at the scan and see if the surgeon [was] going to be able to biopsy or not. Was it reachable based on location?
I got on the video visit with my husband and the doctor said, “Hey, Sam, I saw your CT. I don’t think I’m going to be able to safely biopsy that because it’s too close to your carotid artery so I’m going to refer you to interventional radiology.” I thought, Okay, that makes sense. I wasn’t hysterical.
I had a three-year-old daughter that I had just finished nursing within the month or two before so I still had milk in both breasts and I guess it lit up on my CT scan. When I looked at my scans the weekend before the appointment, I wasn’t even concerned about what lit up in my breast. Then the next thing they said, without knowing a little bit more of my history, was, “I see something lighting up in your chest so I’m pretty sure you have metastatic breast or lung cancer.”
The doctor told me this and there was no pathology yet. I knew it was probably my breast milk. But that What if? part of my brain said, “A doctor’s telling me that I probably have metastatic breast or lung cancer.” I started hearing this high-pitched [sound] and the light drowning out everything. My husband sounds like he’s underwater and he’s right next to me. I started bawling.
I don’t even remember finishing the video visit. I think my husband finished it for me because I went nuts. My next vision was [of] my daughter at my bedside, giving me hospice care before I die. My mind flashed to a situation that could have potentially happened if I was a young person with those cancers. And that’s not even rational either because these days, people [with] late-stage cancers are doing really well and able to live much longer than before with all the new therapies. But I wasn’t thinking that. “Oh my god. He’s just giving me a death sentence.” That’s how I felt.
I was referred to interventional radiology and that doctor was amazing. My new PCP, my whole team, [and] all my colleagues were helping to expedite things. I was biopsied pretty quickly. They fit me in within a couple of days.
The day I received my path results
When I found out, my OB-GYN called to see how I was doing. She’s a colleague and a friend. While we were on the phone, she said, “Sam, your path just came back. Can I open your path report?” I said, “Okay, okay, you can do it. You can open it.” She opened it and said, “It’s Hodgkin lymphoma.”
I started bawling and was like, “Thank you, thank you, thank you.” At that point, there was so much whiplash and it was such a drastic swing from [when] it was a very different situation potentially. I was so grateful that this was Hodgkin’s lymphoma.
I just spent that weekend on a high. I was skipping around, “Okay, I’m going to live. It’s just going to be a touch of chemo.”
My older two were eight and nine. We have gone through a lot of illness experiences with them. My husband is a liver transplant recipient and had a bout of testicular cancer in medical school and some health issues so we weren’t new to being on the patient side of things. In fact, I spent so many years as the wife in the waiting room eagerly awaiting any information. I know what that feels like and I always tried to remember that when doctoring people. Now it was me. It was such a shock.
When [my husband] was sick, initially, we would try to keep it from them because we thought we’re protecting them. Until there’s something that they can see visually, we don’t need to tell them. But kids are smart and they pick up that nervous energy, that tension.
Giving them some version of the truth that’s digestible developmentally at their age is really important.
When my husband was really sick one time — I thought we were keeping it all together — my four-year-old (who is 10 now and was nine when I first got diagnosed), his hair fell out. I took him to the doctor and she did all these tests. We were concerned about some illness and when we ruled everything out, she said, “I think his hair fell out because he’s really stressed. Is there anything going on?” I told her that my husband had just had a hemorrhage, we were waiting for a liver transplant, and he’d been in the intensive care unit.
She put us in touch with a child life specialist who guided us and said that kids see the visual, they feel the stress, and their minds fill in with the worst possible scenario. Sometimes, giving them some version of the truth that’s digestible developmentally at their age is really important.
We learned that earlier on and we knew that we were going to have to share this with the kids, at least the older ones. Things were about to get real with chemo and I was going to look really different pretty soon.
We decided to separate the older boys for the conversation. My older son said, “Wait, you? You’re sick? What are you talking about? Dad’s the one who we always worry about and you were just running 10 miles last week.” We told him and then we told our younger one.
The responses were really different. My older one was really mature and expressed his shock very openly. The younger one, the middle son, said something like, “Okay. Can I go play basketball?” He heard it, but he wasn’t ready to process anything. We didn’t tell our daughter until I had to buzz my hair and all that. She’s three at the time.
Treatment
There was some question about my staging because I had lung tissue involvement. Am I really 2AE or am I stage 4? The extra involvement of organs outside the lymph nodes can potentially be stage 4. When your lungs are involved, it’s somewhat controversial. If it’s continuous with the lymph nodes in that area, then you’re still 2.
What I understood at the time was that it would impact the length of chemotherapy because if you’re earlier stage, you might get two to six months depending on any number of things. But if you’re a stage 4, you’re almost certainly getting six months of ABVD.
They use the Ann Arbor classification and that’s the most classic one. Is there one group of lymph nodes above the diaphragm or two? Then once you’ve crossed the diaphragm to the other side, where your belly is, that tends to be stages 3 and 4.
[There are] other exceptions to those rules and different ways that you can come up with different stages and risk factors. Do you have anemia? Do you have elevated inflammatory markers? All kinds of other things can be taken into account that help put together a whole treatment plan, your true stage, and your prognosis with that stage if you have these other features on lab work.
Happy anniversary, Sam squared!
After my first ABVD
ABVD chemotherapy
I think this is where I started becoming or at least feel like I was becoming labeled as the anxious patient because I had questions, [like] the lung involvement and what that meant. It started to feel like, “We’re going to discuss it and tell you what you are and what the recommendations are,” and really in a nice way. More like just let us take care of you and you focus on getting better.
For me, it didn’t feel that way. I want to be part of the conversation. I want to really understand what’s happening to my body [and] what the rationale is. Why not stage 4 or why stage 2? How did you decide that? I think physicians aren’t always used to getting those kinds of questions and I wasn’t asking anybody to defend the decision. I really wanted to understand. When I started asking those questions, I began to feel like, “Oh, geez, I’m a little too much right now.”
I was concerned from the get-go that I was really a stage 4, that it was more complicated, or that somehow four months of chemo wasn’t going to cover me. I just had that fear from the beginning. I don’t know why.
Would it be two months of radiation? Would it be four months? Would it be involved-field radiation? Some of the terms I had started reading about. I had to look them up, too, even though I’m a doctor. Would it be six months? When I started asking those kinds of questions and why this and not the other, that’s when I started to feel that things were taking on a certain vibe.
The answer that I got was, “Just start the chemo and then we’ll see what the two-month PET shows,” because that’s how it tends to go with Hodgkin’s. You get a PET scan after two months and see where you’re at. The response determines the rest of your outcome. Do you need more chemo? Do you need less chemo?
My second month PET scan was really good. The concern was just two more months of chemo, four total. I was concerned from the get-go that I was really a stage 4, that it was more complicated, or that somehow four months of chemo wasn’t going to cover me. I just had that fear from the beginning. I don’t know why.
I pushed for six months because I felt like I really want to slam this thing. I wanted just one and done if there’s any chance of relapse.
I don’t want to ever see this thing again. And for many people, that will be the case with Hodgkin’s.
Learning to feel beautiful with a port and less hair
By that point, even [after] four months, I started to feel really tired — that Mack Truck feeling is what I call it. I’d lay in bed for about three days after every ABVD. My mom called it the lagoon because I would just lay there with the lights off. The fact that I was advocating for more, I really didn’t want to do it but I thought if this [did] anything to positively impact my survival, then I wanted the more aggressive treatment.
I think they’re like, “Okay, she’s nuts. She wants two more months of chemo.” But I don’t want to ever see this thing again. And for many people, that will be the case with Hodgkin’s.
Side effects from ABVD chemotherapy & how to manage them
Looking very sick (and feeling it, too)
ABVD is a tough regimen. It was hard to figure out the toughness of things. Was it just the chemo? Was it the meds they were giving me to help with the side effects of chemo? That was hard to sort out at various times.
Nausea
Nausea was a big issue for me so I was on a lot of different anti-nausea medications — Zofran, Ativan, Phenergan. I was getting steroids. I also had Zyprexa one or two times, which is an antipsychotic medication. That was horrible. I was a zombie for days and couldn’t think at all — worse than the typical chemo brain. I really can’t put any sentences together. For some people, it’s an amazing drug and it works really, really well.
That’s one of those things. You’re trying different medications — some things are going to work for some people and other things are going to work for other people. It’s just important to know what’s out there so that you can ask for it.
Spiking a fever on chemo: body cold, head always hot
Hair loss
That was a big turning point for my daughter. She’s three at the time and that was a big visual cue to her that something was really wrong, along with my port.
I buzzed my hair the first time on my own then I just appeared hairless one day and that was really upsetting for her. She wasn’t even able to tell me that. She just avoided me and had some stutter that was stress-related. As I would get better and worse throughout treatment and the relapse, her stuttering would coincide exactly with when things were not going well with me. She’d get better when I get better.
I would have never thought to include her in that ritual or experience but it turned out to be really empowering for her.
The hair loss was interesting. Who would think to involve their four-year-old daughter in buzzing their hair? When I had my relapse and I knew I was going to lose my hair, I asked my husband to watch the kids while I was buzzing my hair. I was going to throw on my wig, which looks a lot like my real hair.
My daughter comes and sees me with the buzzer in my hand. She said, “What are you doing?” I said, “I took some medicine that’s going to make my hair fall out so I’m going to buzz it off.” And she goes, “Oh. I’ll take care of that for you, mom.” She took the buzzer and shaved my head. And that time, she wasn’t upset as much about me being bald because she made me bald. I would have never thought to include her in that ritual or experience but it turned out to be really empowering for her.
I had so much chest involvement that I’d have to get radiation all over my chest. There was so much that they would hit inadvertently — my chest wall, the breast tissue, and the surrounding lung tissue.
Because I was only 38 and they’re planning for me to be alive a long time, managing toxicities or second cancers and the potential for that with your treatment is something that your doctors are always thinking about. Some of the pushback is because they’re thinking Hodgkin’s can be really curable even when it comes back.
In Hodgkin’s survivors, we really want to manage the long-term toxicity so that’s not the thing that’s making you the [sickest]. Also, heart disease. Coronary artery disease can happen more if the heart field is involved in the radiation. All these things to think about.
That was the other thing about why they were okay with six months ultimately was because they said, “If you did have radiation, it would have been four months plus radiation. Six months of chemo seems reasonable. Crazy [but] also reasonable.”
Post-treatment scans
In the first two months, it’s like it melted and my cough went away. At about two months in, I started getting a cough and I was on ABVD. Since I’m a runner and I want to be able to run in the future, there was some concern that I was having some Bleomycin toxicity. At the time, we just thought we don’t even want to [take a] chance.
There’s a new trial that had just come out called RATHL and that trial showed that therapy can be deintensified if the two-month PET scan looks good. You can go down from ABVD and drop the Bleomycin, even if the person’s not having cough or side effects. For me, it was like, “Hey, this trial just came out.” “Yeah, you’re having a cough. We’re going to drop it. But not to worry because studies are showing that’s actually just as good as ABVD if you just get AVD.”
I didn’t get repeat pulmonary function testing. They knew the two-month scan looked good. This trial was just published supporting that you could drop [Bleomycin] anyway so why put me through another round of testing?
[My doctor said] it seemed reasonable and worked with me on that. I was really appreciative. Running is my life. It’s my coping skill. I ran through pregnancy. I ran through all kinds of grief and stress in medical school. They knew about that upfront that [it] was a very important aspect of my life and that we wanted to preserve that.
That’s what I did from months two to six. Then I had my end-of-treatment PET scan and it looked great.
Last ABVD! Or so we thought…
Complete remission
I was in complete remission.
We celebrated that first night. The kids sang “Happy No More Chemo to Mommy” instead of “Happy Birthday.”
I remember the visit. My doctor said, “You’re in complete remission and you need to go on a vacation.”
I had my end-of-treatment PET scan and it looked great. I was in complete remission.
Relapse
Initial symptoms of relapse
I wasn’t feeling well. I felt really beat up. I didn’t feel right. Something wasn’t right. I just didn’t trust that things were okay because I didn’t feel okay.
My health really declined over those six months. I gained a lot of weight from the steroids and the more weight I gained, the harder it was to manage further gain. It just spiraled out of control.
I started feeling a little bit of a lump in my neck. I wrote to my doctor at the time that I thought I felt a lump and that was maybe in November. I had my end-of-treatment PET in October. Within a month, I felt a pea-sized lump.
I wish I made an in-person visit, but I emailed and my doctor said, “Let’s just keep an eye on it and if it’s still growing or if it’s still there, then in two weeks, we’ll talk about what to do next.” That was around the holidays and, in my mind, I knew that wasn’t right.
A person who’s just had cancer now feels something really similar in the area right where you already had cancer. On some level, I was like, “This isn’t going to be good.” But I accepted that decision. Let me just give myself two more weeks to enjoy the holidays before I have to face the reality that I’m relapsing. I allowed that timing of things to happen, even though I knew that it wasn’t right [and] that I needed to advocate.
During that two weeks, I messaged my doctor that I thought it was growing. She said, “Okay, let’s get a PET.” But then I got COVID and I really felt quite ill. Fortunately, I wasn’t hospitalized. I was pretty sick with flu-like symptoms [and] high fevers for about seven days so that delayed everything. We don’t want to PET scan right after you get COVID because it can cause a lot of false positives that are actually not cancer. It’s just COVID. It’s very hard to tell what’s what. It delayed my ability to get the PET scan and biopsies. That all got pushed back [for] about a month.
Getting diagnosed with the relapse was tough. My doctor, once the PET was positive, was a fierce advocate for me. We started with interventional radiology with an ultrasound fine needle aspiration, which they don’t usually like in Hodgkin’s. The cells are really big so if you get a fine needle aspiration and it’s negative, you don’t necessarily know: Is it negative because there’s really no cancer there, or is it negative because we just stabbed the tissue next to it and we missed the cancer cells?
The FNA was negative, but we didn’t believe it because of the PET scan. The stuff that was lighting up [in the area that was most accessible] was lighting up the least and the stuff that was lighting up more brightly was deeper in my chest.
I ended up having to get a bronchoscopy with an endobronchial ultrasound-guided biopsy. They put a camera in through your airway and they biopsy through your airway. I was intubated and had general sedation at that time, which was scary because that was the first time I’d been under general anesthesia.
Emotional roller coaster
When I was finally declared no evidence of disease, I took a nosedive into severe depression after the physical recovery started. My counts were starting to come back from my last chemo, no evidence of disease on the PET, felt like I was starting to potentially get out of the danger zone, and then I just fell apart.
I couldn’t concentrate and I didn’t know if it was just the accumulation of all the chemo. Chemo brain is such a broad term that people use, but for me, it was always really a combination of severe sadness and difficulty functioning in everyday life, difficulty remembering things, difficulty doing what I would say, or executive functioning tasks. If I only have one thing to focus on, it’s fine. But when I’m going through an episode like that, give me a list of groceries to get at the store and it’s going to take me twice as long to find my way around. Can I cook a dish while my kids are talking to me? That would be really difficult.
When I was finally declared no evidence of disease, I took a nosedive into severe depression after the physical recovery started… I just fell apart.
A combination of that and remembering who I was just six months before. I was a highly functioning person. I felt like it was such a far fall for me. Even though now I’ve done a lot of frameshifting in a more positive way, I was really comparing myself to where I had been. I was so scared that I would never come back to what I was, even though I did.
When I got to the transplant later on with the relapse, I had the confidence of knowing that I could feel that badly emotionally but that I could come back from that and recover.
Emotionally, I hit the floor and that was tough. Lasted a couple of months. I delayed returning to work first because [of] the emotional and neurological issues. I have that muscle pretty well fine-tuned where I know I shouldn’t be taking care of patients because I’m not okay. I’ve been through it so many times with caring for my husband and I knew I wasn’t okay. I delayed it initially to get through all that.
When it became clear that I was relapsing and it was just a matter of diagnosing, I communicated to my work, “I don’t think I’m actually going to be back for a while because I’m pretty sure I’m relapsing.” I kept them updated but it was a roller coaster for them, too.
My doctor at the time ended up leaving the organization where I was receiving care so I changed to another doctor right about the time I started therapy for my relapse. She was really kind about that. She just said, “It just takes how long it takes for you to get better and it’s different for everyone. Try not to be too hard on yourself. You’re also going back to a very different job. Some people have a more physical job. It’s not as cognitively intense, but your job, you’re in charge of people’s lives. You’re making really important decisions. Your baseline of being well enough to go back to work is going to be different than somebody else’s, depending on what you do and how safe it is.”
It just takes how long it takes for you to get better and it’s different for everyone. Try not to be too hard on yourself.
Thoracic surgery, post-op. Chest tubes suck
Reaction to the relapse diagnosis
I got to a place where I was starting to feel better emotionally [and] neurologically. Then the relapse got diagnosed and I had to have robotic-assisted thoracic surgery. I wrote a letter to my family if I don’t wake up or don’t come back because I never had surgery this invasive. I remember that being really emotional.
The relapse was a combination of shock and then things moved quickly. I was referred to the local bone marrow transplant center and started having appointments. The bone marrow transplant doctors started working with my hematology-oncology doctor to make a plan. I started therapy pretty quickly because I was feeling so poorly.
Treatment
Brentuximab targeted therapy
My doctor advocated for me to start Brentuximab, which is the therapy that I took as soon as possible because I felt this left-sided upper chest wheezing. I was trying inhaler [and] it’s not doing anything. I was actually ready to take steroids just to make it go down.
Once I got diagnosed, she said, “The sooner you can start therapy, you’ll just start feeling better.” I started therapy pretty quickly so I felt like I didn’t even have time to think about everything. It just happened so fast.
My 39th birthday at Brentuximab infusion
Brentuximab rash
Side effects from Brentuximab
There was a little bit of discussion about [whether it] should be Brentuximab alone versus Brentuximab with ICE, which is one of the regimens that can be used for relapsed/refractory leading into transplant. But my thinking had already started to shift a little bit.
Initially, I felt, “Yeah, slam it with everything upfront.” Then I felt the cumulative effects of six months of that. I was given an option of Brentuximab alone and then re-PET after a couple of cycles to see [if] that worked well enough and if it didn’t, then get something else versus upfront getting ICE plus Brentuximab. I thought, Oh. Brentuximab alone? Yes, please.
More Brentuximab rash
Digging my 90s throwback pixie cut
I knew it was a targeted therapy, which meant that you’re still going to have some side effects but your hair could continue growing back. I didn’t need a lot of pre-meds before my infusions and that meant I could think better. I actually worked for a couple of months remotely just doing really small things like answering patient emails and connecting with my group. I was able to think pretty well on Brentuximab alone.
The first infusion that I got, I called my mom on the way home and said, “Oh, this is nothing. It’s like sailing. No big deal at all.” That was after one infusion. I started getting more of the infusions then the hives came on my elbows and I started having really bad joint pain like I’m an old lady. And nausea, vomiting, and diarrhea. Not a ton of nausea [and] vomiting. Nowhere near the first time, but there was a lot of pooping. I called it “chemo cholera.”
Those are some of the side effects but way more manageable. That was even confusing for my kids because while I was on therapy, they saw me getting better. They were having trouble realizing that this was going to get worse again because I was starting to look so much better healing from the ABVD.
Managing the side effects
I started off with Imodium, then I was taking high doses of Ibuprofen and Tylenol, alternating, and I was doing creams. When that didn’t work, I was doing Zyrtec, an antihistamine. Then we started talking about Prednisone. I ended up on more serious pain medication. I needed that just to get through.
Taking pain medication regularly for a couple of months, even if it’s just [a] low dose, taking it exactly as prescribed, and tapering off of it exactly as you’re told — it’s not fun coming off of it. It’s very uncomfortable. But I was so uncomfortable with the joint pains. By that time, I was getting infusions every week and the side effects were really starting to add up. I just weighed the options and knew that I needed something stronger.
Bone marrow transplant
Single therapy of Brentuximab before the transplant
Three months and then I had to get a re-PET.
COVID shot
I got my COVID booster on the Friday before my Monday PET and I also had a little bit of a sore throat. My kids had an upper respiratory infection, but I didn’t feel horrible compared to everything I had been through. I wasn’t thinking, Maybe I should let my doctor know that I’m not feeling 100%. I just had my vaccine.
Now I know that they would have said, “Okay, let’s wait on your PET scan for two to four weeks because it’s probably going to show some stuff that may not be anything. We’re really trying to find out: Are you in complete remission or partial remission before you go into your transplant?” Because those are important things that help your doctors to figure out your overall statistics.
I had my PET and it was confusing because it wasn’t no evidence of disease and it wasn’t complete remission. It was questionable partial remission. We came up with a compromise. Instead of doing ICE, there’s a way to collect your stem cells [the] old-school way that uses chemotherapy instead of what most people do now, which is G-CSF injections or Neupogen.
They said, “Because we don’t know and there’s a question that maybe you got a partial response and this is the old way that we used before we did Neupogen anyway, we’re going to give you Cyclophosphamide as part of your cell collection process going into transplant.” I had another huge slug of chemo down at Stanford and that was tough.
Getting Cyclophosphamide
I should have gone to the hospital [with] the amount of pain that I was in.
Day 11 of hemorrhagic cystitis
I ended up having my first really serious complication from chemo, which was hemorrhagic cystitis, which is basically peeing blood and blood clots for about two weeks. It was really, really awful. Every time I went to the restroom, it was like having a baby crown. Every single time for about two weeks. Ultimately, I figured out [that] if I just lay in the bath and drink a lot of fluids, then I can just drink and pee in the bath instead of having to go. It was crazy. It was totally crazy.
It’s pretty rare. The thing that’s probably even rarer is someone trying to stay home through that kind of thing. Now that I’m able to step back and look at it, I should have gone to the hospital [with] the amount of pain that I was in and [the] things my family was saying. At one point, my son said, “I think you’re getting better because you’re screaming a little bit less when you pee.” I wished that I had gone to the hospital but in COVID, it’s such a hard thing to figure out. Should you expose yourself to everything in the hospital or not?
The night before BMT admission
Making trips to Stanford fun
Bone marrow transplant process
The transplant was amazing. Even now, I’m in total awe of the whole thing. It was probably one of the most physically grueling things I have ever been through but also one of the most beautiful.
The cards that I gave to the nurses when I left the hospital said something like this felt like giving birth to myself all over again. It was a really emotional, transformational experience and also really scary.
Everybody is exceptionally kind there. My bone marrow transplant nurses were like Mother Teresa. They were so, so nice and the care was outstanding. Everything from the food that you could order on the phone and all the different options. The compassion of the medical team, particularly the nurses, was outstanding.
Apheresis
The transplant was amazing. Even now, I’m in total awe of the whole thing. It was probably one of the most physically grueling things I have ever been through but also one of the most beautiful.
I’ll never forget one night that I was in there and I was just really, really nauseated, totally uncomfortable. This is after I’ve had all the chemo, had my cells going in, and everything coming back. I was so just nauseated and got pretty much everything there was to give for nausea. It was the middle of the night. My nurse said that his other two patients were quiet. He came [into] the room, paged the doctor, [and] confirmed there was nothing else to give to me.
Instead of leaving my room because he couldn’t give me any medication, he got a wet cloth, put it over my head, rubbed my back while I vomited, pulled up a chair and just talked to me, and didn’t let me suffer alone. That’s just one example of countless examples. They’re like doulas. They guide you through the process.
Even when there’s nothing left to give you or nothing left to do, they try heating pads [and] cold packs. “Try sitting this way.” “Let’s get you out of bed.” “Let me help you shower.” Just the incredible level of care and human experience. It feels so awful to feel that sick but people shepherding you through that — such an amazing feeling that I got to know that level of human compassion.
Recovering from bone marrow transplant
When I got home the first day that I was discharged, I thought, Are they really going to let me out of here? Because I’m a hot mess still. They really do try to get you out of the hospital as soon as possible and I think part of that’s just you’ll do better at home. You’ll get up and down more. It’ll be your food, your bed.
I was really glad when I finally got home. But it was hard. I was still really very sick. One of the drugs that I got [in] preparation for my transplant was Melphalan and the nausea [and] vomiting with that drug [were] pretty bad. [And] since I’m already sensitive [to] nausea, I was nauseated for quite a while.
Why does everyone bring food when you’re nauseated?
It feels so awful to feel that sick but people shepherding you through that — such an amazing feeling that I got to know that level of human compassion.
Making the trips back and forth from Sacramento to Stanford, which is about 100 miles away, I would sometimes barf out the window. It was tough making those long car trips.
Other people opt to stay in the area and that probably would have been smarter to do. But emotionally, I really needed to come home and start the healing with my family. My kids are so young that they weren’t allowed on the transplant unit. Even during COVID, the number of visitors [is] limited. I needed to go home.
Once I started feeling better physically, I had a similar emotional crash after ABVD and I’m still working my way out of that.
I had a lung complication called pneumonitis, [which] can be a delayed chemical irritation in your lungs after chemo and that was difficult to diagnose. I felt like my lungs were shutting down. I had pulmonary function tests that confirmed the case, that there was a really big drop in my lung function from right before the transplant.
I got treatment started very promptly, which is high-dose steroids, and within a couple of days, I was able to breathe much better.
But steroids have side effects. Emotionally, I was manic and reorganizing drawers then I felt really depressed.
Sweating every day is important, especially when you’re depressed on steroids
Mom moved closer. First infusion with me
Maintenance therapy with Brentuximab
I remember my doctor mentioning it, even the one before who ended up leaving our organization. She mentioned it briefly and I stored it away because I started asking my doctor about it. There was a lot of, “Just wait for that part. Just get through the transplant. Just hold your horses.” But I wanted to know.
My Stanford doctor [and] the transplant team helped to make that decision and talk about a trial that was done or a paper from The Lancet that talked about risk factors at time of relapse. What stage were you [at] when you relapsed? Did you have symptoms like night sweats and fevers? And I did. But it was confusing because I had also recently had COVID and so we weren’t sure if those sweats and B symptoms that I was having were from COVID or they were from my relapse. There was a back and forth just to cover for that, just in case we decided to do the maintenance therapy [with] Brenuximab, which I do okay with.
I always try to be the Goldilocks of patients — not too much, not too little, but just right. It’s a difficult balance to strike.
Importance of communicating with your doctor
It’s very tricky to be a doctor-patient or a healthcare worker patient. You can’t not be who you are or not know what you know. I don’t want to make anybody feel like I’m telling them what to do or telling them how to do their job.
I always try to be the Goldilocks of patients — not too much, not too little, but just right. It’s a difficult balance to strike.
When I first brought up the potential for relapse, what I really felt should have happened right away is, “Oh, there’s a lump? Why don’t you come in soon so I can feel it, document it, and order a scan?” Maybe a more assertive person would have said that from the get-go, but I didn’t. I was still in my phase of what I call trying to be politely ill. I don’t want to offend anybody or make anybody else uncomfortable, even though I’m the one with cancer. I still have to work through some of those when dealing with behaviors that make me feel uncomfortable and try to give that feedback to my team.
Cancer was just terrifying since the beginning. Part of what I’ve been dealing with, even now just trying to communicate with my medical team, is that sometimes I feel the irritation from questions I’m asking. I’ve been told, “Just email me if you have any questions,” so that’s what I do. I have questions so I email.
I can feel that they’re busy and maybe slightly irritated [from] the tone [of] some of the messages — that’s what I’m projecting onto it but that’s how it feels. I just think, Why am I even dealing with that? Why should I even have to think about [it]? I’m the one with cancer. I don’t want to need healthcare professionals in my life. I’d be so happy to stay away from hospitals. But you do, you have questions.
I found that I have to just get out of my comfort zone and be really honest with my team. “Hey, when you said this, it made me feel this way. It hurt my feelings,” or “It made me feel scared when you said that,” or “I felt that I couldn’t ask questions because of the way that you spoke to me.” I’ve had some of these exchanges and they’re extremely uncomfortable. But I think I’ve been able to say them in a way that conveys that I love my doctors and my healthcare team, and I also need to be able to ask questions about my life.
There were a couple of nights where I just felt so sick, really at the brink. Then you come out of it and you get better. But my perspective was I got a second chance. This is my life. I need to stop being afraid to ask for what I need. It’s my one life.
I know that sounds crazy but that’s how I felt in my most vulnerable moments in the dark of the night when I’m just thinking about things.
Feeling like you’re on the “wrong” side
There have been times that I have actually been straight out called anxious or labeled anxious in person. At one point, my doctor said, “You know, Dr. So-and-so and I have talked and we think you’re anxious.” That to me was so hurtful because I would have loved to be asked how I felt. “How are you feeling about things?” Anxiety might have been one of the emotions, but I would have also said hopeful and excited for life and the opportunity to get treatment and a lot of different things but I’m working through it.
Batmom on Halloween
Being told how I felt, that happens to people over and over again. It’s happened to me a lot of times. It’s really painful emotionally and I think my fear deep inside was I feel like my doctors don’t like me and I feel like I’m really starting to piss them off. If they don’t like me and I’m one of their most annoying patients, they’re going to start avoiding my room or the person that’s tasked with saving my life won’t try as hard to think about my case or advocate for me.
I know that sounds crazy — I certainly would never practice that way and, in reality, I don’t think that my doctors would do that — but that’s how I felt in my most vulnerable moments, in the dark of the night when I’m just thinking about things. Geez, I think I’ve really irritated this person. What if they don’t take me seriously or try as hard as they can to save my life because they don’t like me?
The power inequality was something that I always really felt and I think that non-health professional patients would find that surprising. You’re both doctors, but I’m not the one in charge holding all the cards. I just have to accept this treatment and the recommendations.
After my relapse and recovering from my relapse, I’ve been trying to become more emotionally empowered, which means asking for what I need, saying when something makes me uncomfortable, [and] taking care of myself — my body, my mind, [and] my needs.
I saw anxiety, anxiety, anxiety. I thought to myself, Yeah, I’m anxious. I’m a doctor-patient and this is a really awesome place that’s super amazing, high-level care known all over the country, all over the world. There have been experiences like this all throughout my cancer where I have to check the information or check the provider and make sure that’s correct. Of course, I feel on edge — anybody would. It’s your life. Then it’s always documented all over my chart, really thoroughly, how anxious I am. That to me just doesn’t feel fair. I’m sure other patients probably feel that way, too.
I’ve been trying to become more emotionally empowered.
Scary BMT mask. Hard to make friends, easy to cut in line for a bathroom
Getting strong post-BMT
The impact of notes on a patient’s chart
It’s tough. The transparency of note writing is a good thing overall because I do feel that it leads to more objective, less passing judgment on the patient and more the patient states they have anxiety or they need to document the anxiety because there are certain medications that are tied to it. I think that’s all helpful.
But those things are absolutely erroneously carried forward sometimes. I’ve had patients tell me, “Somebody wrote diabetes in my chart years ago and now it’s everywhere. I don’t have diabetes. I do have peripheral neuropathy and they don’t really know why I have it, but it’s not from diabetes. Can you figure out a way to get that expunged from my chart?”
It’s real for patients. Somebody writes something and maybe an insurance company sees and that impacts their decision-making. Or in the middle of the night, it could be a medication in an ER somewhere. [There are] a lot of potential ways that it could impact your care.
Clearing up communication lines with your doctor
I wrote to my doctor and said that I think there’s something wrong with our communication. I really want to be your patient. I respect you. Your words and your tone lately make me feel like you don’t like me and that I’m really irritating you. And that’s terrifying from your oncology provider who’s supposed to save your life. It’s terrifying to feel like they’re irritated with you or pissed off at you. If there’s something broken, let’s fix it, and just tell me what it is because I will be happy to adjust how I express what I need. I don’t want to irritate you. I want your job to be easy and I want my care to be easy.
I felt that the right choice was coming out to this person and saying that and also saying maybe it doesn’t have to do with me at all. Maybe you don’t think about me at all after you email but just so you know, this is how it comes across. Maybe you just let it go and moved on to the next thing. Maybe you don’t even think twice about me after this. Maybe it wasn’t how you intended it, but this is how it came across.
Celebrating a friend’s myeloma remission
Right after I wrote it, I was terrified. Oh my god, why did I do that? But my provider wrote back to me and said, “I’m so sorry. I didn’t intend it to be that way. We need to actually talk face to face or on the phone.”
Sometimes with electronic communications, it doesn’t capture [the] tone. Doctors are super busy and rushed so sometimes what they feel is just being direct and brief, even if it’s a little bit salty, can be really painful for the patients. I get it on both ends.
This is somebody that I work with and so I feel that I need to look into why the relationship is broken right now or how it got broken. And also the very real fear that if I do decide to go to somebody else, even though this would be [the] first change of my initiation, it could be viewed as doctor shopping. Once you get labeled an anxious doctor shopper, it’s really bad.
I decided [to] be human about it and try and fix it. But that took a lot of courage and it’s taken me a year and a half of battling cancer to get to that point. And it still was highly uncomfortable. Not everybody’s going to be able to get there but some people might.
I think one of the reasons I felt so emboldened and supported was [that] I talked to my bone marrow transplant support group the night before. I told everybody, “I don’t know what to do. How do I figure this out?” They all just said, “No, no. You shouldn’t even have to be thinking about, ‘Does she like me or not like me?’ Why are you even thinking about that? You need to either say something or change.” I decided that for me, the right option was to say something. But other people might want to change if they feel like it’s too uncomfortable.
Words of advice
I’m still recovering and recovery is not a linear process. Wherever you are, it’s okay. If you feel awful one day, try not to let it snowball into, “This is how I’m going to feel forever,” because you will feel better. Some days you won’t. Some days you need to just [lie] down. This is not the body I had six months ago.
Cancer-fighting salad from ChrisBeatCancer.com
Typical meal
I also found, in helping support my body through conventional allopathic treatment, that a lot of additional things have been really helpful like books about mindset and mental toughness. Since I finished my therapy, I’ve been doing [a] really strict plant-focused diet, juicing, exercising, and support groups — like a comprehensive wellness plan to help me heal. I think there’s this vibe that when you get no evidence of disease or you’re cured, it’s like, “Okay. Be happy. Move on now.”
I feel like I am so broken down right now. How am I going to get better? There are tools out there. There’s something called Wellness Within in the Sacramento area but there are probably similar things in many geographic areas. They help you ease back into exercise, diet, mindfulness, [and] meditation to help the intrusive or trauma thoughts that you might have from your transplant or treatment experience. That’s very real.
Post-bone marrow transplant. Really getting strong. Back in shape!
Plant-focused diet
I’ve had to be very aggressive about taking care of myself and try and push out that feeling that I get from other people. “Are you all better now?” I don’t even know what to say to that. I’m better. I’m a completely different person than the last time we spoke.
You’re not alone. I’d be happy to speak with anyone who might need help. I just feel really lucky to put it all out there.
Recently, I’ve been listening to this book called Can’t Hurt Me by David Goggins. He says, “Your story is your power. Own that shit.” This is one of my first steps and I was really scared to tell my story. There’s this culture in medicine that you just put your head down and keep going but I don’t think I can do that anymore if I want to fully heal. So I’m making my story my power and owning that shit. I’m really owning it.
Books that really helped during my recovery
Recovery is not a linear process. Wherever you are, it’s okay. If you feel awful one day, try not to let it snowball into, “This is how I’m going to feel forever,” because you will feel better.
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
Cancer details: Diagnosed at age 25 1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Before being diagnosed with multiple myeloma and breast cancer, Valarie Traynham worked in the human resources field. Since being on the cancer journey, her focus has shifted to patient education and advocacy.
As a cancer survivor, her goal is to learn more about the diseases, educate others and bring light to health inequity. She wants to use her voice for those who cannot speak up for themselves to ensure that they receive equitable access to good healthcare, clinical trials and proper treatment.
Valarie’s journey in patient education, mentorship and advocacy began when she became a support group leader. She is now a myeloma coach, mentor angel and leader of the Black Myeloma Health Community. She has had the opportunity to talk about disparities myeloma patients face and looks for solutions through partnerships with healthcare providers.
Name: Valarie T.
Primary Diagnosis:
Multiple Myeloma
Initial Symptoms:
Nose bleeds
Fatigue
Back pain
Treatment:
Chemotherapy
Stem cell transplant
Secondary Diagnosis:
Breast Cancer, Triple-Negative
Staging: 1A
Initial Symptoms:
None; caught at a regular screening mammogram
Treatment:
Chemotherapy
Mastectomy
Get educated about your disease. Understand what it is. Knowledge is power. When you get that knowledge, do something with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Pre-diagnosis
Introduction
I’m [a] pretty down-to-earth person. I enjoy the great outdoors when it’s warm [and] spending time with friends and family.
What I do is work that’s around myeloma and patient education. I also enjoy doing things at my church. I’m really involved with my church and that brings me great joy.
Initial symptoms
It was late 2014. The first incident happened around Thanksgiving. I went back to school. I was studying and working on some homework on my computer [when] I got a nosebleed. I didn’t think anything of it. I just stopped for a little bit, held my head back, and [it] kind of dissipated [so] I got back to doing what I was doing.
The exact same thing happened [again] a couple of weeks later but this time, it bled a little bit more, a little longer than the first time. I still wasn’t concerned. I thought it was the weather. I’d asked some of my friends, “What do you think’s going on?” And they’re like, “Oh, it’s changing seasons and you probably got just some dry sinuses.” They told me to “just put a little Vaseline in there. You’ll be okay and keep going.” I did that and I thought it was working.
When I got a bout of flu, it just wouldn’t go away.
About a month later, I got sick with the flu and I just felt tired, overly tired. At that time, I was working full-time in HR. I was overly tired when it came to work, but I didn’t think anything of it. I was working, doing schoolwork, [and] very involved in church, so I just chalked it up to just trying to do too much at one time.
But when I got a bout of flu, it just wouldn’t go away. I went to the doctor. I got all the things that you take [that] should [make you] feel better. It was Christmas Day [and] I couldn’t even celebrate because I was sick in bed so I knew something was going on. I went over to my local [pharmacy]. They gave me more meds and said, “If you’re not better by Monday, go see your primary care.” And that’s what I did.
I went to see my primary care physician. I told her what was going on with the tiredness. At that time, I did have some back pain. It was nothing major. I told her about the back pain and the nosebleeds. She listened to what I had to say. She ran a complete panel of blood work and that came back showing high protein so immediately, she sent me to see a hematologist-oncologist. That’s how things started.
When she sent me to the hematologist and I saw ‘oncologist’ tagged on, I knew something was not like it should have been.
Initial hematologist-oncologist appointment
When my primary care referred me to the hematologist, I didn’t think anything of that because I had been diagnosed with anemia many, many years ago and I was taking iron supplements.
It wasn’t until I went to see the hematologist and found out that he was an oncologist as well. I’m like, “Why would I need to see an oncologist?” It was something that snapped in my head at that moment. This is a little bit more than what I’m thinking, but I still didn’t think anything too drastic.
I make this joke all the time. I tell people, “I went to see my hematologist thinking I was going to get a prescription for iron and I came back with a cancer diagnosis.” That’s literally how it happened.
When she sent me to the hematologist and I saw “oncologist” tagged on, I knew something was not like it should have been.
I heard the term ‘biopsy’ and I’m like, ‘Okay, this is really serious.’
Testing
They were a little suspicious from the blood work. At this time, they were still doing the full body X-ray. It was when they did the full body X-rays and the bone marrow biopsy [that] all the pieces started to come together.
Another incident that let me know it was a little bit more serious [was] when they asked me to come back. I went and did blood work for the hematologist early one morning and before I had gotten home, the nurse called and said, “We need you to come back. The doctor wants to do some more tests.” I’m like, “Well, what does he see? What is he expecting?” She wouldn’t say anything so that was another thing. Something’s going on because I haven’t even gotten home and you want me to come back right away.
She told me to come back because they needed to do a bone test. I didn’t know what that was. Little did I know that that was a bone marrow biopsy. When I got there, I heard the term “biopsy” and I’m like, “Okay, this is really serious.”
Importance of a good support system
Luckily, my friend went with me. She said, “I’m not going to let you go back over there by yourself.” I did have some support when things started to unfold.
I remember the doctor talking to me and I heard the words, “You have myeloma. It’s incurable.” I went blank for a minute. It is always helpful to have someone with you [to] maybe ask some questions that you wouldn’t even think to ask [or be] a second set of ears, second set of hands. You want to have somebody there.
It wasn’t as shocking because I had just learned about my chart. I had been looking at every single test that had come back. If this is high, what does it mean? Multiple myeloma kept coming up and I’m like, “What in the world is that?” But I still put it out of my head.
It wasn’t until that moment I went into the office and was sitting there and heard those words. It was like somebody kicking me in the gut. What? Cancer? An incurable cancer? And that’s when the flood of fear came. I’m going to die. I’m too young to die. Why me? All of those range of emotions. How am I going to tell my family? What do I say? Where do I even start to talk about this?
My friend, Judy, went with me to that appointment. She’s a cancer survivor as well so she was like, “I’m not going to let you go by yourself.” That was very helpful to have someone who has heard those words before. She knew exactly what I could have been feeling so she was there to help me keep it together.
Breaking the news to loved ones
It was hard. I didn’t do it right away. It [took] a couple of weeks. I knew they would have questions that I didn’t know [the] answers [to] or where to even begin.
My friends see me every day and they want to know what’s going on. It was easier for me to say, “Hey, this is what’s going on,” and just left it at that because I didn’t know what to expect.
I don’t live near my family so it was a little difficult. It was hard because I didn’t know what to tell them. I didn’t know the answers. That was one of the most difficult things to do. I finally got the courage to just say, “I’ve got multiple myeloma and this is what it is. I don’t know where it came from. I don’t know anything, but this is what I’ve got. This is what I’m looking at.”
What was very helpful to me was the advocacy agencies… Places like that are very good to provide information.
Learning about multiple myeloma
It was tough to begin with because [of] the shock that you have myeloma. But I learned very, very early. I wanted to learn as much as I possibly could about whatever was invading my body. If I can learn about it, I can at least try to get one step ahead.
For me, I always say it was just a control thing. I felt the more I knew about it, at least I would have some control. That was my mindset so I went on this mission to find out whatever I could about the disease.
It just stuck with me, actually, this whole time. I’m always on a mission to find out a little bit more about the disease.
Finding the right information
It’s different for everyone. What was very helpful to me was the advocacy agencies. I went to the IMF (International Myeloma Foundation) website to find out what you’re going to need to know and some questions. They have some cool tip cards and brochures.
I utilized the MMRF (Multiple Myeloma Research Foundation) website [and] found out what was going on. Places like that are very good to provide information.
At that time, HealthTree was just coming up so I was looking to see what I could find that was going to help me figure out what to ask at what point in the journey.
I got diagnosed and they wanted me to start treatment the next day. I was like, “Okay, I guess I should go ahead and do this,” because what do you do when you get cancer? You want to get it out of you.
I didn’t start right away. It was probably a week or two later when I went in. I followed what they said because I didn’t know the right questions to ask. I went along with what the doctor [said]. I hadn’t sought a second opinion. I didn’t realize that I needed to see a specialist.
I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility.
Deciding to get a second opinion
About three treatments [in], I just felt horrible. At the urging of my family, they were like, “You got to get a second opinion. You have to. You’re up there where all those doctors are. You have the ability to do that.” I decided to get a second opinion and it’s one of the best things that I could have ever done.
I saw a hematologist at a local hospital. He treated other cancers as well so I realized that that was not the best thing for me.
They started me out with Thalidomide, Velcade, and Dex — that was my treatment regimen to begin with. I didn’t realize that was an old regimen that wasn’t being used and my doctor probably didn’t realize that either that’s why he gave me that. I did about three- or four-week cycles worth and by that time, I was able to get that second opinion.
I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility. I knew something was wrong because that was not me at all. Two months ago, I could still walk and was coherent.
Where I live, there is a facility called the Cancer Treatment Centers of America. Everyone was like, “You’ve got to go there. That’s all they do — cancer, cancer, cancer. You’re going to be in good hands.” I decided to go there.
It was[then] I started learning a lot more about myeloma and the different treatments available. It was through them that I got connected with the specialists.
I came to find out that my hemoglobin was at 4.6 so that’s why I was feeling horrible. I learned that [my regimen] was not the latest treatment. [It] was standard of care, but there was something better.
I also learned about stem cell transplant. We talked about [it] and what that looked like. I learned a lot more than what my local oncologist shared with me. I feel that with my local oncologist, [there] was a lack of communication. I was told, “You’re going to do four cycles of this, then you’re going to go for a stem cell transplant, then you may do a couple more cycles, and then you’ll be back to your new normal.” And I was like, “Oh, okay, so maybe [in] a year things will be back to normal?” And that was not the case.
When I got to the other doctor, he really explained what the process entailed and [that] there’s no certain time. It’s not like you’re going to do this and you’ll be back to your normal life. It was eye-opening because I wanted to believe what I had been told. It sounded so much better and it would have worked for me if that were the case. But life’s not like that.
At first, I was a little angry. How does this even happen? But it happens. It helped me understand that there has to be more done when it comes to awareness and letting people know about myeloma. Letting people know that this is what myeloma is, but also letting them know what treatments are out there, what you should be getting and what [is] probably not the best thing for you to be receiving either.
Side effects
When I switched from Revlimid to Pomalyst, it took a little bit of getting used to because my body was like, “Oh, I don’t think I like that.” I had major GI issues and most people don’t have GI issues with Pomalyst but that’s something that I was struggling with.
Taking those in combination, I had shortness of breath [which] slowed me down even further. I was concerned. There’s the risk of cardiac issues when you’re taking Kyprolis. I got afraid. I’m like, “I don’t want to take that because it may be doing something to my heart. I’m having shortness of breath already.” They sent me to see a cardiologist a couple of times just to make sure everything was okay and [it’s] one of the side effects. I eventually adjusted to that. That’s just part of the new normal so I adjusted and kept going.
I was very vocal. Even if I thought it was a side effect, I would say something because I didn’t know. I looked at the list of everything that could happen but maybe this is something that hadn’t been reported. It is possible.
With Velcade, I did have some neuropathy in my toe area to start with. My doctors would always ask, every week when I would come in to get it, “Are you feeling any numbness, tingling, or anything of that nature?” Even if it was a small amount, I would make sure that I said something so they could do something about it and that was very helpful.
Velcade is a subcu (subcutaneous injection) and I’m sure most people would have those little spots on their abdominal area wherever the shot was given. Sometimes it could be painful and I would tell them so they could guide me on what to do. [There] wasn’t a whole bunch they could do. It’s just unsightly. It’s a reminder of what you’re going through but still, I was very vocal in letting them know what was going on.
With Revlimid, one of the first things that scared me is I woke up itching one morning. It started as an itch on my legs. Did something bite me? Is it a mosquito bite? Before the end of the day, I was just itching all over uncontrollably. The more I scratched, the worse it got. Nothing would take it away. I called the doctor and they called in a prescription that would help. But people need to be aware of that. I didn’t know that could happen. I was surprised. What the heck is going on? It was really bad.
I realized that I’m not in control of this or anything else.
Dealing with treatment roadblocks
It was that word: control. It was then that I realized I’m not in control of this or anything else. I did all the things that I was supposed to do. I got my knowledge. I have no control.
All of those feelings, I just sat with them. I didn’t try to push them away. I just said, “You’ve got to deal with this. You’re going to have to deal with this.” And I just dealt with it.
My faith played a very important role. I had my prayer partners praying and that helped me tremendously. And I sought some therapy because I knew I can’t do this by myself. It’s not something that I can just pray away. I really needed some outside help.
I needed somebody that was going to listen and just listen. I couldn’t talk to my friends because they didn’t understand. They just hadn’t been there. They didn’t know. Therapy was one of the best things I could have done because my therapists helped me through the process.
My faith played a very important role… And I sought some therapy because I knew I can’t do this by myself.
Stem cell transplant
Preparing for stem cell transplant
I did four cycles of treatment thinking it was going to bring down the disease burden to where I could move forward with [the] transplant. At the end of my four cycles, I’m thinking, “Yes! It’s [the] transplant.” It didn’t happen. I hadn’t eliminated enough of the cancer cells in order to move forward.
Then comes the conversation of [needing] to do more therapy. We’re going to continue the induction therapy. That’s when I found out about myeloma clones. Never heard of that until I was about six months in. It’s those little things that if you know, then you can be better prepared.
I wasn’t prepared to be told [I] can’t go to transplant. It’s so funny because I went and shaved my head. I was like, “I’m going to shave it all off before it happens.” And they’re like, “No, you can’t. You’re not ready for that yet.” I was disappointed, a little angry, [and] just bewildered. What’s happening now? Another gut punch.
I got switched to Revlimid, Velcade, and Dex. I did four additional cycles. [When] it wasn’t working anymore, I was switched over to Kyprolis, Pomalyst and Dex, and I had [an] immediate response. That’s what really got me ready for the transplant.
Expectation setting
Going into the transplant, I was told what I could expect. I used to follow The Myeloma Beacon. I started following Pat Killingsworth and listened to what he said. I got his book about stem cell transplants. I read the book and I’m like, “I’m going to make sure I do everything that they say to do.”
Follow the advice of your doctors and nurses. They do this every single day. They can tell you how to prepare. I listened and followed some of the big names out there. These people know what’s going on and that helped me prepare for the transplant.
The week before the transplant, I found out my insurance was not going to cover [it] where I wanted to do it. That was something else that had to be worked out. Eventually, we got it taken care of but that was a very stressful time just trying to figure [it] out. What am I going to do if the insurance is not going to cover it here? What do I do?
Dealing with insurance issues
I was working with the stem cell transplant navigator at the hospital. She was such a godsend because I didn’t know what to do. I did not need the stress. She was like, “Hey, this happened. We’re going to take care of it,” and she just knew the right things to do.
I had everything in place. My family was coming out to spend time with me. A couple of my friends had taken off work. They had taken vacation time to be there for me. So when I heard this, I’m like, “Whoa, everything’s in place. It can’t just not happen because it’s going to affect other things.”
She helped me get it all worked out. Have somebody working on your behalf. Don’t try to do it all by yourself. If you’re one of those people [who thinks] you don’t need help, you do need help. Someone to help you with paperwork, to make phone calls for you, to do that type of work for you. People want to do that so let them.
The stem cell transplant navigator was excellent. My other friend, Karen, was excellent [at] making phone calls and doing things. I didn’t have to stress a lot because they made sure that things were taken care of. They [took] the pressure off of me.
Don’t try to do it all by yourself. If you’re one of those people that think you don’t need help, you do need help. People want to do that so let them. When things come up, let them.
Stem cell transplant process
It was a little scary at first. I was going into the unknown. I didn’t know what to expect. They told me, “On this day, you’ll go in. You’ll get the high-dose Melphalan. Make sure you chew ice chips. Then you’ll have a rest day and then you’ll get your stem cells back.”
A couple of weeks before, they give you shots that stimulate the stem cells. I had to give myself those shots in my stomach and that was a process because I never had to give myself shots before.
After four days of shots, I went to the facility to harvest the stem cells. They put this big catheter in your neck, which feels really, really weird. It was very painful for me to do the apheresis and get the circulating stem cells from the blood. That process was a little scary because you don’t know what to expect. You’re laying in bed hooked up to this machine and you see the blood going out of your body and being flushed back in.
I was very fortunate. I got all of the cells I needed in two days so I didn’t have to come back. They told me it could take four days to collect the cells.
I didn’t go for the transplant right away. I waited a couple of weeks and something was going on with my schedule and I wasn’t able to go.
Then came the insurance issue. My cells were frozen for a couple of weeks. I [went] back to the facility and had to reinsert the Hickman port — very uncomfortable to go through that process.
I’m admitted to the hospital. They test for C. diff (clostridium difficile infection) and lo and behold, I’m positive for C. diff so there’s another component that you don’t expect. That means I’ve got to be isolated in addition to the transplant. Other precautions had to be taken as well.
I remember it was a Wednesday evening. It was a very long day. I get the high-dose Melphalan and I’m chewing on ice chips. Thursday was my rest day. Bright and early Friday morning, the nurse comes in, checks all my vitals and she’s like, “This is it. This is the big day.”
A couple of hours later, the other nurse came in with this little bag of cells and I’m like, “This is the life-sustaining things that I’m going to get back.” At that time, a couple of members of my family had come up. My friends had taken off work to be there for me, supporting me. They kept a chart to let me know what was going on outside of the hospital.
I received my cells back. It was Friday morning [at] about 11:40, [I] celebrated my new birthday and the rest is just waiting to see what happens.
Recovering from the stem cell transplant
One of the most trying times was waiting for that engraftment period. I didn’t feel too bad the first couple of days. [On] the third day, I could start to feel something’s going on. The fourth day [was] okay.
On the fifth day, my head started to hurt. Every time I would run my fingers through my hair, it would just hurt tremendously. I’m like, “What the heck is going on?” Little did I know that was the beginning of the hair getting ready to fall out. And that was tough, even though I knew it was going to happen. It was still tough when it did happen.
Like clockwork, on day five, all my numbers bottomed out. I was feeling horrible [and] had the worst diarrhea that you can imagine. I felt that I was going to die. I woke up that morning and I was like, “Oh my God, I could die from this.” At that time, I was alone. My visitors hadn’t come in yet and I was just sitting there like, “I could die. If I get an infection, I could die. There’s no way I can fight it off.”
There was another patient undergoing stem cell transplant [who] had been there a few days before I’d gotten there, caught an infection and didn’t make it. Just knowing that on top of everything else, I was a basket case.
But I had great doctors, great nurses [and] a great team of people [who] took care of me and pulled me through it. They would come in every day, check on me, do what they had to do, and say, “Hey, you got to keep positive. You will get through this.” And I believed them because they do this every day. Why would I doubt them?
Recovery was really hard. The thing that surprised me most was the overwhelming fatigue. I would get up, sit on the side of the bed and go, “Oh, I can’t do this today,” and lay back down for a little bit. Then realize, “Okay, you’ve got to get up. You can’t just lay here in the bed. That’s not going to be helpful to you,” so I managed to get up. Then it was like, “Okay, let’s get to the shower,” so I would manage to get a shower, but I [got] out of the shower and I [had] to lay back down again. I’m like, “What in the world is going on? I can’t even hold my arm up.” That went on for a pretty good while.
I didn’t have to worry about cooking, cleaning, or anything like that. My friends were very good with making sure I was taken care of [so I could] take my time and get better. I made myself get out, walk to the mailbox, [and] walk around the block just to get some exercise. When I did that, I did feel better. There were times when it was 1:00 or 2:00 in the afternoon and I felt I needed a nap. I listened to my body.
Maintenance therapy post-SCT
We talked about what was going to happen after the transplant and we agreed on consolidation therapy. That was very popular at the time. Some doctors were doing it, some were [not]. We talked about doing consolidation for about two to three months after the stem cell transplant.
Consolidation therapy is just a continuation of the therapy you were on before you went for the transplant. You just do it a little bit longer to deepen the response to try and get rid of more of the disease burden.
When you look at that myeloma iceberg, consolidation therapy chips away at that iceberg a little bit more. We talked about doing that for two to three cycles more and that eventually turned into a 12-month cycle.
I really didn’t fully understand that at first. “We talked about two to three months. What are you talking about?” But when they explained to me how we want to deepen the response, I’m like, “Oh, okay. I guess I can go through this a little bit longer.” In my mind, that’s going to give me a longer remission, help me live longer, [and] help me live as much as normal life as I possibly can. I fought it at first but when I saw the risk-benefit, why not?
Consolidation therapy
We talked about what’s next long before the end of 12 months because I [didn’t] want any surprises. We talked about just doing Pomalyst, going on a single regimen for maintenance.
[While] I was going through consolidation therapy, I did MRD testing. I did find out I was MRD negative, which I was really excited about. I understood what MRD negative meant so I [asked], “Do I still need to do maintenance?” Because we had talked about going on maintenance indefinitely.
Side effects from Pomalyst
Once I completed the consolidation therapy, I went right into maintenance therapy. I didn’t have any problems with it [initially] but eventually, it did weaken my immune system to a greater magnitude to where my counts were always low.
I was doing monthly blood work. I had to do that in order to get Pomalyst. My counts were consistently low. I was having to get the Neupogen [and] Neulasta shots to build my ANC (absolute neutrophil count) up.
At that time, my hemoglobin was still borderline. I was still often fatigued. I had a conversation with my doctor about that and they were like, “Okay, maybe we can do a dose reduction.” We talked about that, what that meant and what it looked like. I did a dose reduction and that did help improve my numbers to where I was not as bad all of the time.
I stayed on that particular dose for a couple of years then the same thing started to happen. I was experiencing bone marrow suppression. It was really bad so we did another dose reduction. I told him what was going on, how I was feeling, [and] how it wasn’t improving. You could see it in my blood work. Every month, it was the same thing.
We decided to do another dose reduction and found a happy spot where I’m comfortable. I can live freely, so to speak. I’m comfortable doing things without fear my counts are low. And this is before COVID. You have to go out in a mask and it’s like, “I don’t want to do this.” You [can’t] participate in events because you’re afraid. If I get this least little thing, I’m going to be sick and down for days. It relieved that. It made things better.
Testing for minimal residual disease (MRD)
MRD stands for minimal residual disease. It is the test to determine if they can detect any myeloma cells after transplant or induction therapy. It wasn’t something they did on a regular basis back [then]. When I had that test done, I was very happy to hear that I was MRD negative.
My doctor and I had talked. “After you finish consolidation therapy, we’re going to put you on a single agent Pomalyst as maintenance.” My question was, “What if I’m MRD negative? You just said I don’t have any traces. Why should I take this? Why should I want to continue with the maintenance again?” They explained to me [that] the goal is to get rid of as much myeloma as possible, chip away at as much of that iceberg as possible.
When I saw the benefits, I made that [decision]. It was ultimately up to me if I didn’t want to do maintenance. All I had to do was say, “No, I don’t want to do that.” The doctors would have been okay with that.
That’s one thing I learned: shared decision-making. You have to have a say in it because ultimately, it’s your body, it’s your quality of life so make sure you have a say in what’s going on. Don’t just go along with it.
Receiving a second cancer diagnosis
I was doing well, trying to get back on track to my new normal and along came a breast cancer diagnosis. This was out of nowhere.
I was going for my yearly mammograms and always was told, “You have dense breasts. Just keep an eye out for things and we’ll see you back next year.” At this particular time, I went for my mammogram and got a callback. They [said] “We want you to come back. We need to do an ultrasound.” I didn’t think anything of it. I’m going to go back and they’ll do an ultrasound and tell me I’m good. That was not the case this time.
They picked up something on the screening mammogram [so] they pulled me back for a diagnostic mammogram and ultrasound. When they did the ultrasound, they did see a couple of things that were not on the previous year’s ultrasound so I was sent for a biopsy.
I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better.
I was scared. At that point, I knew what biopsy meant. They’re looking for something. They don’t just send you for a biopsy. It was breast cancer. Here I am again, that whole gut kick. Again? Really? Where did this come from? What did I do to deserve this?
But I will say, having been on the myeloma journey and knowing a little bit more, it was a little easier to manage this. I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better than I did going into the multiple myeloma. That’s been an added step to my journey. I’d like to say [that] myeloma prepared me for the things that I went through with breast cancer.
Dealing with a second cancer diagnosis on top of myeloma treatment
With the breast cancer diagnosis, I was terribly scared. I’m going to have to get treatment for this. Is that going to trigger something in the myeloma? That brought about this fear. Am I safe to do this?
The breast cancer diagnosis was very early stage — it was stage 1A. There was no lymph node involvement but the location of the tumors [meant] I [had] to have a mastectomy. That is a whole ’nother beast. The blood cancer was almost like an invisible cancer. It was something that was going on within your body.
With breast cancer, it was a lot different. It was harder. Having to have [my] breast removed was very difficult for me to accept in the beginning. This was just too much. I can’t go through this. I just can’t do this. It’s just the thought of amputation. I was very fearful.
Even though I was prepared as a patient, I was still very fearful because I didn’t know what the treatment would bring. I didn’t know [what] the side effects would be. Again, I tried to be positive about things and look for the silver lining.
My breast cancer was triple negative. There’s no pill that I can take to suppress anything. Again, I was very fearful. What if I go through all this — I have this chemo and I have my breast removed — what if it’s still there? What if it comes back because it’s triple negative and it’s not as easy to treat? I was dealing with a lot of fear in that instance as well, just like I was with the myeloma.
What helped me was I just sat there in the fear. I acknowledged that fear. I was thinking, Okay, you’ve gotten through myeloma. You can get through this, too. It’s very early stage. I was in a good position, if that makes sense. I don’t [think you’re] ever in a good position with any cancer, but I was in a good position where I wasn’t too concerned.
My doctor assured me early on. “We can take care of it. This will not take you out, Valarie.” That was very reassuring to hear. The oncologist said that the surgeon said the very same thing. Very supportive and [guided] me through that process as well.
How culture influences health care
There are so many things that vary from culture to culture. A lot of times, cultural beliefs prevent people from moving forward with a certain treatment. Not just stem cell transplants, but certain treatments. Receiving blood — certain cultures just don’t do that. Those things have to be acknowledged.
You have to understand someone’s culture in order to understand why they would make certain decisions. Culture is a big influence on decision-making in many instances.
Dealing with the healthcare system as a black woman in America
Being a myeloma coach, I get to talk to myeloma patients, many [of] who have been newly diagnosed and [have] been on the journey for a while. I get to hear a lot of what they have been through or how many times they had to go to the doctor to get a proper diagnosis.
I realize that I’m very fortunate. My primary care knew the tests to run, picked up on the high protein, and sent me to see a hematologist. I know that is not always the case. People may have to go to the doctor two or three times before they even are heard to say, “Hey, this is what’s going on.”
I talked to many people who, when they get to the doctor, find out that they’re in kidney failure. On top of having the disease, it’s the shock of how you are told that you have the disease. Those are the types of things patients deal with.
I was talking to this lady. She went to the doctor [and] finally got the diagnosis, but they wanted her to wait to start treatment. They didn’t want to start treatment right away. Why would they want you to wait? That doesn’t make sense. I see that that doesn’t make sense, but as a patient who doesn’t know how things are supposed to work, that may seem normal.
I was told about [the] stem cell transplant early on in the process. There are patients [who] are not told about that. They’re just told, “We’re going to utilize this treatment and if this doesn’t work, then we’ll go to something else.” This was before we had so many novel therapies so it’s not like you had a lot to choose from. It was just assumed you don’t want a stem cell transplant, you may not be able to get to the facility, or you may not have the support to go through a transplant. It’s just varying things that patients have to deal with when it comes to health inequities.
As a doctor, you have to talk to your patient and find out where there is hesitancy. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it.
Sometimes it’s not discussed simply because it’s not talked about. And that’s very unfortunate because of the bias. You’re making that assumption just because I live in a certain zip code that maybe I shouldn’t do this, I wouldn’t want to do this or I don’t have the ability?
A lot of it is just access to care. We [have] to make sure that we’re getting the patients to the right place at the right time. We have to break down those barriers.
I’m not a doctor, but as a doctor, you have to talk to your patient and find out where there is hesitancy. Let’s say you talk to someone about a stem cell transplant and they decide they don’t want to do it. You have to find out why. Is it that they don’t want to do it or [do] they have other things creating barriers [that don’t allow] them to do it?
Child care. If you have children, you can’t just say, “Hey, I’m going to shut down for two weeks to be in the hospital and then I’ve got 100 days of recoup time.” Who’s going to take care of things? Who’s going to take care of the house, particularly if it’s not a two-person home? Getting back and forth to the clinic [for] follow-up visits. All of those things need to be taken into consideration. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it. There may be underlying reasons.
People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow.
Importance of shared treatment decision-making
It’s a game changer, particularly for patients who are accustomed to just going along with what the doctors say. In the African-American community, that’s kind of the norm. The doctor knows best. He knows more than you do about the disease. You need to follow what you’ve been told. That’s just instilled in a lot of us. But that’s not the case. It doesn’t have to be like that.
People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow. You don’t have to follow what the doctor is saying blindly because you don’t think you can say anything. You can say something and you should. Because again, it’s your life. You have to live with the side effects. You have to live with the treatment schedule so you want to have as much say as possible in that.
All of those feelings that I was still in, I just sat with them. I didn’t try to push them away.
Words of advice
It was my faith that really pulled me through and knowing I’m going to get through this. I believe that I’m going to get through this. I’m trusting the process, as they say. Just trust the process.
You have to acknowledge those feelings that you have because if you don’t acknowledge them, they would just eat away at you. Tell somebody. I told my friend, “I felt like I was going to die this morning. I really felt that. I didn’t know what was going to happen, what could happen.” And that was very helpful when I let that out, when I released that and said something.
You can’t ignore your feelings because they are not going to go anywhere. They’re going to be there. They want to be acknowledged. I acknowledged every thought that came. I’m scared.I might die. It was just getting it out there and releasing it. Having that release was very helpful in my situation.
Find something that’s going to give you hope. Very early on with the myeloma, I got connected with others [who] were on the journey. Get connected with others that have been on the journey.
About six months into my diagnosis, I met a 26-year survivor and that just brought me so much joy. I was like, “26 years? You lived? I can do that, too! It’s possible for me, too.” Meeting that individual gave me so much hope.
Don’t think you’re alone in this. You’re not alone. There are so many people dealing with a lot of the same things that you’re dealing with. Reach out to those people. Get connected. Whether it’s through a support group or a group at your church, get connected.
One thing that you don’t want to do is shut yourself off from people. Don’t shut yourself off because that’s not going to do you any good.
Make your needs known. People don’t know what you need. They can speculate. “Oh, she’s going through cancer. She may need this,” or “Oh, she just got out of the hospital. She may need this,” but don’t make people guess. Let it be known because people want to help. They’re willing to help but a lot of times, they just don’t know what to do so you got to tell them.
Get educated about your disease whether it’s myeloma, breast cancer or any other kind of cancer. Find out about the disease. Understand what it is. Don’t just listen to what people tell you. I’m not saying you have to be this research advocate. Knowledge is power.
When you get that knowledge, do something with it. Don’t just sit on it. I think that’s where we make the mistake a lot of times. We have all this knowledge and then we don’t do anything with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.
Look for the positive. I try to be positive about everything. [There’s] a silver lining somewhere. Find that silver lining.
Listen to your body. Don’t think that you have to get back to life. You have to heal. You have to listen to your body and take the time that you need to get well.
Sometimes, people are afraid to speak up because of embarrassment. “I’ll just deal with it.” Don’t suffer through. There are things that can help you get through so take advantage of those things. Utilize those things. Communicate with your doctor. I know a lot of people are not comfortable talking to their doctors. Talk to the physician’s assistant. Talk with the nurse practitioner. That’s what they’re there for.
You [have] to speak up. If patients are heard or feel they are heard, that would change the whole dynamic. A lot of people, if they feel they’re not heard, they’re going to stop talking. It’s not going to benefit them.
Listening and understanding — listening for understanding and not just listening to say, “Well, I heard what they say. It still doesn’t make sense to me.” It may not make sense to you, but it’s still acknowledging what the patient said, what’s been said.
Find others on the journey. Connect with others. Educate yourself. Knowledge is power.
Don’t think you’re alone in this. You’re not alone.
Lessons Learned & Top 10 Tips for Other Cancer Patients
It’s been 5 years since Stephanie Chuang, founder of The Patient Story, was told she was NED (no evidence of disease). As part of Blood Cancer Awareness Month, she celebrates by putting together a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
She hopes her documented ups and downs will resonate with some of you out there and be helpful to you.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Looking back
December 10, 2016. Fun times on a date with my family in San Francisco. These would be the last non-cancer memories captured on my phone. Just three days later, I would hear, “I’m sorry you have lymphoma,” and be thrust into an out-of-body experience — stuck in the hospital while doctors ran tests and scans for an entire week to figure out what was wrong with me.
Alien-like images from dozens of tests and scans. This was the hardest period — not knowing what the diagnosis was and just trying to figure it out. There were tests upon tests in under a week. I was poked and prodded constantly, including an excisional biopsy (where I was fully under so they could remove and test the lymph node) to the bone marrow biopsy (that only required local anesthesia before the “drilling” began).
Now, no evidence of disease for five years and, for that, I am really grateful. This is a walk-through of all the high and low lights that I’ve gone through with the main goal of sharing the top tips I’ve learned throughout this process and throughout the years. I hope it will resonate with you and help you in a meaningful way.
A lot of this, I filed away and forgot that it happened. And that’s married with a lot of things that have happened in the recent years of survivorship. Feelings of anxiety, stress, and a lot of emotion. Anxiety from scares of recurrences and a lot of tears. Working in a space where it can get pretty somber and where we’ve lost some pretty incredible people.
However, the main message I hope you take away is, you are not alone. After speaking with hundreds of other people impacted by a cancer diagnosis and having in-depth conversations, we really do share a lot of the same thoughts, feelings, and emotions. You are not alone. We are definitely not alone.
Tip #1: Emergency Department may lead you to faster care
If you already have some test results — at least a partial diagnosis or a start of one — it may be faster to get care if you go to the hospital emergency department rather than try and schedule an oncology appointment. That’s what I did and it worked for me. It was advice from our friend David, a doctor at UC San Francisco, where I went for my cancer care.
Five years later, I can admit: my husband convinced me at one point to sneak out to go all the way across the street — but it was just the other side of UCSF.
What I found is that actions first can lead to emotions later and joy can follow.
Tip #2: Break the monotony
Find moments to break up the monotony of treatment, the tests, and everything that feels so sterile. [I’m] not encouraging you to break rules per se but to live a little.
What I found is actions first can lead to emotions later and joy can follow. It’s not easy, but it can happen.
Tip #3: Seek out the humor
Seek out the humor in situations, if you can. Of course, there are some [days] where it will seem next to impossible. But if you can, it really can help.
For instance, the nurses and physician’s assistants who were taking my temperature [during my] first week of hospitalization, it was happening all the time and they were announcing the number so often, I joked that it sounded like a radio jingle.
For me, my family really was everything.
Tip #4: Draw your boundaries
Draw your boundaries and pick your people. You don’t owe anyone a call. Let people know about your diagnosis if you want them in your corner and you know they’re going to give you the kind of support you want and need.
Though I have to say, my people started a support campaign and it was incredible. Love poured in from my closest inner circles to people I may have only met a couple of times. It was truly uplifting.
But for me, my family really was everything — from home-cooked food at every meal to helping me with blood thinner injections twice a day, every day. And those really added up.
Tip #5: You are a big part of decision-making during treatment
Don’t forget, you are a big part of treatment decision-making and with that also comes the quality of life decisions.
I was two months from getting married when I was diagnosed. The cancer was very aggressive — diffuse large B-cell lymphoma with double expressor, they said. My hematologist oncologist and my family all wanted me to go into treatment right away. I didn’t want to. I had read about how one of my chemo drugs, Cyclophosphamide or Cytoxan, was a high-dose alkylating agent, which meant it could cause or contribute to infertility. That scared me.
I went ahead and froze embryos with my then-fiancé. Again, people may not understand, but it was so important to me and I knew that.
First up: ovarian stimulation with lots of shots. I got a lot of help with some of those shots. Then came the egg retrieval surgery and then embryo freezing. They did try to preserve my fertility during chemo by giving me a shot of Lupron beforehand. (Spoiler alert: My husband and I were blessed with two children in the last few years without dipping into our reserve. And for that, I am so, so grateful.)
Next up was the first cycle of chemoimmunotherapy. Always really unsettling to see the nurses put on hazmat suits just to touch the bags — and that’s bags of stuff that would be going inside of me.
By the end of treatment, more than 600 hours of infusion. The drugs killed both the bad and the good cells, and that’s where side effects came in.
You are a big part of treatment decision-making and with that also come quality of life decisions.
Tip #6: Don’t chase the side effects, especially nausea
By the time you feel it, it’s too late. And trying to get rid of nausea with the pills after can be really, really hard.
One of the worst side effects and most well-known is hair loss. Many other patients I spoke with who also lost their hair due to chemo shared the same experience as me. It started to fall after the second cycle and this does depend on the treatment you get.
The worst feeling was seeing clumps of hair on my pillow. That’s when I decided to do the first step of getting a haircut. The shaved side that looked like Cassie, the singer. It’s a style I wouldn’t have ever gotten on my own.
I never wore the real human hair wig I got that cost a ton. It was too itchy for me. I liked the hair that was attached to the baseball cap because the top was so much more comfortable; that material actually felt okay.
The worst feeling was seeing clumps of hair on my pillow.
Tip #7: There will be ups & downs and that is okay
This experience is not going to be a straight line and that is okay. Anxiety is natural to have. I’ve struggled to push it away, but I’ve had some scares of the cancer coming back.
I pushed for extra scans a few years after treatment. My doctor did not advise it, but she also gave me room to decide and I appreciated that.
This experience is not going to be a straight line and that is okay.
Tip #8: Wear loose clothing without metal
For those of you headed to a scan, wear loose clothing without any metal. I didn’t have to change into a gown because I wore loose clothes and sweatpants. No buckles, no metal, no zippers. If you’re a woman, you use bras usually — just don’t have any wiring. That way, you don’t have to change. Again, loose clothing in case you need IV so that they have access.
Tip #9: Earlier appointments may help you get results faster
Schedule your appointments earlier in the day. It may help reduce the wait time, depending on where you go.
What I found in the past, at least at UCSF, getting the morning appointment sometimes really does let you have these results later that day, which is amazing. As you know, “scanxiety” is a huge part of not wanting to wait. Just give me something to go on so I can have a plan if I need to have one.
Tip #10: Speak up for yourself!
We are the only ones who can and will. For me, there’s never been a day that passed without feeling around my neck and my chest for swollen lymph nodes because that’s how I got diagnosed the first time.
I don’t want to waste my doctor’s time. I’ve thought a lot about that. Oh, she’s too busy. She’s got more important cases than me. We feel that way and we think that. But there was enough for me to feel like something wasn’t right so I worked up the courage to see her in person, where she would feel around my lymph nodes and check me in person.
At the end of the day, we want doctors who will listen to our concerns. The good ones do listen. And when it comes to treatment options, for the most part, the good ones also encourage second opinions.
Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope.
Give yourself grace
I try to remind myself all the time and I find it’s pretty hard to do, but that is to give yourself grace and don’t “should” all over yourself. It’s something I really do need to internalize.
I’ve struggled a lot throughout the work I do for The Patient Story to fight survivor’s guilt. Why do I get to live when others don’t or didn’t? It’s especially hard after becoming friends with incredible patients and advocates, and unbearable when we lose them.
I’m not going to say who, but there’s someone I got to know — an incredible woman — and she’s been letting me know in her words, “It’s getting pretty bad.” She said, “I’m going down fighting.” When I read her message, it really stung because it’s happened multiple times in the last few years that I’ve been working on this and it just gets hard.
I’m still a work in progress, but I try to remind myself to celebrate each win that we get to amplify the voices of these amazing people.
Ultimately, I hope you take my five years after treatment as a win not just for me but for you, too. [I’m] not saying my experience will be yours, but I am glad you found me and our community, and just know it is a lot more hopeful than all those outdated statistics we find everywhere.
Life with and after cancer is not easy, it’s not pretty, and it’s definitely more brutal for some than for others. But there is a lot of hope in how we can live in a meaningful way despite a diagnosis.
I celebrate these five years not just as chemo and cancer free but with gratitude because I’m also celebrating the fifth anniversary of our marriage. We eloped to keep our original wedding date so cancer couldn’t control that — it was between my second and third cycles of chemo. Then we had our big celebration after I was finally done with those hundreds of hours of treatment. I’ll never forget all the love that day.
I hope you never forget that throughout whatever experience — in cancer and in life in general — to give yourself grace.
Alex Oshmyansky, MD, PhD, is the Founder and CEO of the Mark Cuban Cost Plus Drug Company. He shares the catalyst that made him pivot from being a practicing physician to starting a pharmaceutical company.
In this conversation, he talks about the exorbitant costs of medicines along with Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, and the complicated and convoluted path from pharma to patient, and what his company is doing to offer drugs at the best prices possible.
Alex Oshmyansky, MD, PhD: [I’m] a board-certified diagnostic radiologist. I have a PhD in applied mathematics. When I was a kid, I was going to be a string theorist, so a high-energy particle physicist. I was being fast-tracked into that. With all the wisdom of a teenager, I decided that wasn’t going to be impactful enough in the real world so [I] made a hard shift [in] my last year of college and decided to major in biochemistry instead.
I graduated at 18, went on to medical school and completed an MD-PhD program. [I] went on to do my internship in general surgery at Brigham and Women’s Hospital and then radiology residency and pediatric radiology fellowship at Johns Hopkins.
At Hopkins, I was working with a pulmonologist on a research project. One day, he came in infuriated because two of his patients died over the same weekend. They both needed a drug called Bosentan, which treats primary pulmonary artery hypertension — hypertension specifically of the big blood vessel that comes out of the heart and goes to the lungs — and they both needed it urgently.
At the time, the medication cost $10,000 for a month’s supply, despite the fact that it was long off-patent [and] was a generic product at that point. They were meant to apply to a patient assistance program set up as a nonprofit by the manufacturer who made the product, got caught in the red tape and both of them tragically died [on] the same weekend.
I had been angry about these topics for some time and you think that’d be enough to set me off. But what really became the straw that broke the camel’s back was Martin Shkreli.
In 2015, he was a social media villain-of-the-day type [of] guy. He was a hedge fund manager who took over a pharmaceutical company and increased the price of a drug called Daraprim — generic Pyrimethamine, primarily used by indigent patients or immunocompromised — by over 10,000%, hundreds of dollars a tablet.
I got very mad and some of my friends, who are also doctors, [also] did. We decided very naively, “Let’s set up a nonprofit pharmaceutical company that will make drugs [and] sell them at cost.” While working as a doctor, [I] went out for the better part of three or four years trying to raise funding for the nonprofit and did not succeed. Failed spectacularly — raised $0 beyond what I put in myself.
Eventually, [I] got talked into converting it to a for-profit public benefit corporation — but with a registered public mission with the state. [I] eventually sent Mark Cuban a cold email. I sent it on a whim and surprise, surprise! He reads all his emails. And the rest, as they say, is history.
Stephanie, The Patient Story: What’s really fascinating is Martin Shkreli became the symbol but what a lot of people didn’t realize was that he wasn’t the exception and he became the villain. There were so many other things happening.
Alex, Cost Plus Drugs: [He]seems to have a histrionic personality [and] likes attention. He’s really quite a small fish in a big pond of people who are much worse actors than he was. He took much of the blame because he seemed to enjoy it. But he was not the biggest actor in this space by far.
The path is incredibly complicated. It’s very convoluted and that’s by design.
Alex Oshmyansky
The path from pharma to pharmacy
Stephanie, The Patient Story: Which I think would surprise, still to this day, so many people. This is where there’s a lot of misunderstanding. I didn’t learn about the term PBM (pharmacy benefit manager) until fairly recently. There is this path that goes from the pharmaceutical companies — with the research and development of these drugs — to the pharmacies where you and I go to pick up the drugs and the prescriptions. Could you summarize what happens? What is in this path here?
Alex, Cost Plus Drugs: The path is incredibly complicated. It’s very convoluted and that’s by design. There’s a layer of financial engineering that takes place between you and actually purchasing the product.
Pharmacy benefit managers are firms [that] are outsourced to by insurance companies to decide which products are covered by insurance. They manage all the payments. Back in the 1980s, before computers were as widespread, they were initially there to literally process payments. They would get paid to do the paperwork when a prescription insurance claim was submitted.
What they (pharmacy benefit managers) realized was… the best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.
Alex Oshmyansky
What they realized over time was, since we’re paying for the drugs anyway, we can collectively bargain for the drugs. They turned into negotiators for drug prices. There’s a big to-do recently about Medicare negotiating for drug prices, which is a great thing, but we technically already have professional negotiators doing it. Those are the pharmacy benefit managers.
Eventually, what they realized was, The way we’re getting paid is we take a percentage of the savings. That’s how they structure their deals. The best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.
Imagine you wanted to buy a [car] but you hate negotiating at the car lot. It’s miserable. The guys are jerks. “Oh, I have to go to the back and talk to my manager.” Everybody hates that. Somebody comes up to you and [says], “Hey, I will do the negotiating for you and in exchange, I get 10% or 20%,” or whatever the amount of money they save you. You’re like, “You know what? That’s worth it to me. I hate negotiating.”
The negotiator comes back and says, “Hey, amazing news. I got you a great deal. I got you 90% off of your [car].” “Oh, my God, That’s amazing. How did you do that?” “I’m really, really good at negotiating.” Come to find out the sticker price on the [car] was $1,000,000 and you’re paying $100,000 for your [car] plus the fee from the negotiator, which is another $90,000, so you’re paying $200,000 all of a sudden for your [car]. That sounds like a crazy, over-the-top example, but it really happens.
That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer.
Alex Oshmyansky
The example drug that I use all the time — because it’s the most extreme edge case — is a product we offer called Imatinib, which is a chemotherapy product. It’s a tyrosine kinase inhibitor for chronic myelogenous leukemia and you need to be on it for many, many years. The list price, the so-called average wholesale price, is $10,000 for a month’s supply.
Now, if you get it through your insurance and you have a high deductible plan, it’ll be “adjudicated” at between $2,000 and $3,200 as the negotiated discount price plus the margin for the PBM. Meanwhile, if you get it from the Mark Cuban Cost Plus Drug Company, it’s $39 for a month’s supply. That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer. It’s the intermediaries and the pharmaceutical supply chain taking a percentage of the rebate. It’s just one of the many, many scams [that] has evolved over the past 30 years to take advantage of the sick and vulnerable and it’s absolutely morally repugnant.
Stephanie, The Patient Story: We know about pharma companies and the R&D that happens there. There’s a price set. Can you describe the path?
Alex, Cost Plus Drugs: Basically, the wholesalers do take a markup. On specific products, it can be a very, very high markup. Our initial product, Albendazole, an antiparasitic drug, is available from us for $30 for two pills and a complete course of treatment tends to be two pills. But, as far as we could tell, about $70 a pill from the pharmaceutical wholesalers if you purchase it directly from them.
There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles.
Alex Oshmyansky
There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles once you purchase from a wholesaler. That sounds like a lot and it is. It’s perhaps a bit too much but at least they serve a function. They send the products around the country.
The really egregious part of the payment processing comes from the pharmacy benefit managers who administer the payments to pharmacies on behalf of insurance companies. They also claw back payments from the pharmacy so the money goes both ways. They take money from the insurance companies, who in turn partially own them. They set up subsidiary companies called rebate aggregators in Switzerland that have more fees. There’s this spider web of interacting actors.
This is Adam Fein’s from Drug Channels. This is his famous slide, which is a simplified version of the way money flows in the pharmaceutical industry.
Stephanie, The Patient Story: This is simplified?
Alex, Cost Plus Drugs: Yeah, this is reductive. It’s an absolute mess, essentially.
The best way I can describe it is it’s basically a pile of spaghetti with lines going [in] every direction from all the various different actors — PSAOs (Pharmacy Services Administrative Organizations), GPOs (Group Purchasing Organizations), the insurance companies, the pharmacy benefit managers, patients — about the way money winds up flowing in the pharmaceutical industry.
The way I think about it is this is a feature, not a bug. When I was coming out of my PhD, I was recruited to be a quantitative analyst at a hedge fund. Back in 2007, I was interviewing for these jobs and they did technical interviews to see if you knew how to do [the] math. They showed me these incredibly complicated financial instruments — credit default swaps, collateralized debt obligations — and I remember saying out loud at one of the interviews, “Oh, so this is a scam.”
You start with bad debt. You add a layer of indecipherable, stochastic calculus on top of it and then magically, it’s good debt. No one can understand what’s happening so it lets you get away with the scam. Basically, the same thing is happening here. The system is so artificially complicated that it permits theft in the service of it.
Understanding drug pricing
Stephanie, The Patient Story: Okay, I know it’s very convoluted. Let’s just give an example for a $10 pill. Let’s say that’s what the pharmaceutical company has set the price on. Can you give an example of “roughly” what that could look like by the time it gets to us?
Alex, Cost Plus Drugs: On average, it’ll be about probably $20 from the wholesaler. Let’s say $10 just to keep the numbers round — it’s usually maybe $6 to $8. Let’s say at the pharmacy, it’s about $30. Then the price manipulation starts to happen and that’ll be the actual price at the end of the day.
There’ll be a number of artificial prices put on it depending on if it’s a brand name drug [or] a generic drug. Let’s say it’s a generic drug for the sake of argument. Generally, a generic drug is priced at a pharmacy benefit manager at about an 85% discount. They will say that the price of the drug is, in this case, $200 so that’ll be the price you see if you try to pay cash at a pharmacy without using a special program of some kind. It’ll be artificially inflated to $200 so they can negotiate it back down to $30 and then charge a little bit more for the service of negotiating.
Stephanie, The Patient Story: And there’s a rebate also involved?
Alex, Cost Plus Drugs: The manufacturer will have to pay a rebate to the PBM, who in turn takes a cut and forwards part of the rebate to the insurance company that’s paying the ultimate bill. But the insurance company had to pay the whole thing first. [Plus] the wholesaler, somewhere in the mix of all of this, holds the money for six months and makes money off of the interest. It’s a whole morass.
Finding the best price for your prescription
Stephanie, The Patient Story: The impact, of course, is not just these incredibly high, exorbitant costs to patients who, if they don’t have good insurance plans, are then left with the short end of the stick. They’re screwed over, honestly. Talking to Dr. Rajkumar, there’s all this confusion in terms of going to different pharmacies. Can you talk about that a little bit, too, and what Cost Plus Drugs is doing to try and help?
Alex, Cost Plus Drugs: As a general rule, the worst prices will be at your big national chain pharmacies. Usually, the best prices you get at retail tend to be from the supermarket chains because they’re hoping that the business actually drives traffic into the other parts of buying.
Obviously, I’m biased but generally, for most products, we tend to have the best price or at least close to it. We are a registered pharmaceutical wholesaler. We buy the products directly from the manufacturers at our flat 15% markup on top of it, a $3 dispense fee, and $5 shipping and handling at CostPlusDrugs.com. You can get any of about 1,000 generic products from our site as of today and we’ll be adding on brand-name products in the near future.
Always check with the manufacturer’s website. Discount card programs might be an opportunity.
Alex Oshmyansky
Stephanie, The Patient Story: What can people do? What about the people who don’t have their drugs covered yet by Cost Plus? I know you’re working on that. What can they do at home?
Alex, Cost Plus Drugs: There are a number of different resources. Always check with the manufacturer’s website. There may be a co-payment assistance card or other cash assistance program. They might not be the most convenient things in the world but, often, you can get the cash out of pocket. You have to pay down significantly that way.
Discount card programs, like GoodRx or SingleCare, might be an opportunity. They tend to be more generic-focused as opposed to brand-name products. I think those would be the two easiest things if you need a brand-name, on-patent medication.
Generally, the easiest way to know is if it has a really easy name to pronounce, it tends to be a brand-name medicine. Google the name of the medicine, check the manufacturer’s webpage, and see if there’s a program available to help you afford it.
If it’s a generic one, check CostPlusDrugs.com. But if we don’t have it, I would look for a discount card program; maybe there’s a discount available there. You can even ask your pharmacy, “Can I pay cash?” and see. Oftentimes, the discount cards are unnecessary and they’ll just sell you the drug cheaply.
The road ahead
Stephanie, The Patient Story: Thank you for the work that you’re doing. Obviously, people are seeing the benefits. How much work is there left to be done?
Alex, Cost Plus Drugs: Aside from the big three PBMs, there’s a host of small ones that are trying to do the right thing, be more transparent, [and] go back to the old model where they just take a small fee for doing the paperwork and electronic transmissions. And they see us as a real value add to differentiate themselves from the big PBMs who aren’t as open to working with us at this point.
The key is we work with them on our terms, which means no rebates [and] no spread pricing. The price you see on our webpage is the price everybody pays — [whether you’re] a single indigent patient on the street or [you have] a Blue Cross Blue Shield plan. Everybody pays the same amount.
Hoping long-term to change the status quo to something more sustainable… taking the pharmaceutical marketplace and making it like any other marketplace.
Alex Oshmyansky
Stephanie, The Patient Story: Between the brand name and the generic, has it been much harder with one than the other?
Alex, Cost Plus Drugs: The generic companies, it’s been easier to get ahold of those products just because there [are] more of them. There’s more competition and more people looking at ways to get their products across
The brand-name companies [are] not necessarily beholden to the PBMs but it’s a big risk to them to go outside of the PBM structure, which is not great. They’re not thrilled with it because, from their perspective, they do all the R&D, they take all the legal risks, [and] they take all the bad publicity from the public when people complain about high drug costs. And they’re like, Why are these companies getting a third of the revenue from our products? It’s insane.
At the same time, the status quo works for them. It’s a bit of a risk going with us. But I think in our conversations behind the scenes, they’re willing to take that risk at this point. They’re kind of sick of the status quo as well. We’ll be bringing them on in the near future.
Stephanie, The Patient Story: What is the next big vision of what this landscape will be like for people?
Alex, Cost Plus Drugs: Adding more and more products, brand-name products on a very tactical level. Beginning to work with insurance companies over the course of the next year — on our terms, of course.
Hoping long-term to change the status quo to something more sustainable based on taking the pharmaceutical marketplace and making it like any other marketplace — where you can see what the prices are and make rational, informed decisions as a patient and as a consumer based on real prices instead of make-believe numbers.
Manda’s Stage 2B Relapsed Hodgkin’s Lymphoma Story
Manda was diagnosed with stage 2B Hodgkin’s Lymphoma at 19, which relapsed after eight years.
She shares what it was like being a young adult with cancer and the importance of knowing your fertility preservation options, no matter your age.
Name: Manda M.
Diagnosis:
Hodgkin’s Lymphoma
Staging: 2B
Symptoms:
Loss of menstrual cycles
Iron deficiency
Itching
Night sweats
Tiredness
Night terrors
Trouble breathing
Difficulty concentrating
Enlarged lymph nodes
Treatment:
ABVD chemotherapy
Radiation
Relapse Symptoms:
Swelling
Night sweats
Night terrors
Trouble breathing
Bloating
Weight gain
Difficulty concentrating
Treatment:
ICE chemotherapy
Autologous bone marrow transplant
“I wish I would have asked about fertility, honestly… I could have frozen my eggs or I could have prepared for what’s next.”
Thank you to Seagen for its support of our patient story series! The Patient Story retains full editorial control of our content. The interview has been edited only for clarity.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Pre-diagnosis
Tell us about yourself
I am 39 years old. I currently work in strategy and business development. I have two children and a husband.
I grew up in western North Carolina. I stayed in North Carolina [and] live here still. As far as hobbies go, I like to be outdoors. I play with my kids and just generally like to hang out with my family.
My son, he’s six. He’s very empathetic. He understands emotions so he can tell when I’m not happy and he likes to give me a hug when he sees that.
My daughter, she’s just goofy. She does goofy things and she tries to make everybody laugh.
Both of my kids are very independent. They like to do things themselves and they get upset when they can’t do [them]. They’re just really good kids. I think they’re just exactly like they should be. When they get on my nerves, I’m like, You’re my miracle children. I remind myself, You willingly had these children.
“I knew something was wrong because I just didn’t feel quite right.”
Initial symptoms
It started back when I was ending high school and the summer after that. I was having a lot of interesting symptoms in terms of itching and my menstrual cycles. I told my mom and she started to look into different doctors that I could go see.
That progressed into a little bit more intense itching. Then I started to have trouble sleeping. I had already started college, into my sophomore year. That’s when the intense symptoms started to happen.
I went to the dermatologist first because it was itching and it seemed like a logical thing to do. Then I started to feel like, “Maybe I’m allergic to something,” and so my PCP sent me to an allergist. They tested me for a lot of things and decided that I was allergic to a couple of different things so [they] started giving me allergy shots. Then I just kept seeing individual specialists for individual things.
“My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.”
What was going through your head?
I knew something was wrong because I just didn’t feel quite right, but I had started college and so things had changed from a lifestyle perspective. Maybe I wasn’t eating as well, I wasn’t exercising as much, and maybe I was stressed out. I just thought, Maybe it’s just the new normal.
But then I would go to the doctor and just be like, “It’s still not fixed.” My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.
Finding swollen lymph nodes
I came home from school one break during my freshman year and my dad was like, “Why is your neck so big?”
I don’t think anybody thought lymph nodes because he was just like, “What are you doing?” I think you just think college. She must be getting into stuff she’s not supposed to be getting into and so that’s where it left off. I didn’t think of it then. It’s all hindsight.
Biopsy scheduled
I went to the ENT in Claremont, North Carolina, where I grew up and my parents specifically said, “Can we get a surgeon in Chapel Hill?” Because that’s where I was going to school. It took a little bit to make that all happen.
Did you think that cancer was a possibility?
No, that hadn’t even crossed my mind, actually. I thought maybe I just had mono or some infection that just had gone crazy.
Lymph node biopsy
I can’t remember exactly, but I know it was outpatient. It was just at the surgeon’s office. I didn’t go to the hospital or anything. I don’t think there was a complete incision. I think he just inserted something in there.
‘He’s in with a patient, but I can get ahold of them for you. You just stay on the line.’ That would have been a red flag because usually, they don’t drop everything.
Diagnosis
How did you learn that there was something serious going on?
A week had gone by and I haven’t heard from the doctor. My parents were constantly asking me. Finally, my dad was like, “We’re coming up and we’re going to figure out what the answer is.” They came up to Chapel Hill and called the surgeon’s office.
My dad was on the phone. My mom and I were sitting with him. The receptionist was like, “He’s in with a patient, but I can get ahold of them for you. You just stay on the line.” That would have been a red flag because usually, they don’t drop everything.
The surgeon came on the line and then my dad, I just saw his face drop, and that was when they were like, “Your daughter has Hodgkin’s lymphoma.” I looked at my dad and was like, “What’s happening?” He was like, “You have cancer.”
My dad, I just saw his face drop… I looked at my dad and I was like, ‘What’s happening?’ He was like, ‘You have cancer.’
What was it like hearing from your dad that you have cancer?
It was just weird because I didn’t actually get it from the surgeon. It was relayed from my dad, which, now that I think about it, probably was good because both my parents were there at the same time.
He’s stoic. It’s almost as if it was a relief because finally, I know what’s going on. But also scared, obviously, because I didn’t quite understand what it meant. A little uncertain and nervous about it.
Choosing where to go was pretty easy because I was on campus already at UNC and they have a UNC Cancer Hospital there. That process went pretty quickly. I got in to see them within a week or two.
At that point, it was just talking about what the next few months were going to entail. I decided to stay there because they’re on campus so I could walk to treatment. It made it easier because I had everything I needed to reduce my course load.
I had ABVD every other Friday. My parents would come up and I would meet them at my class. They would pick me up, take me to outpatient chemotherapy, and then take me home for the weekend.
Side effects from ABVD chemotherapy
My major [side effect] was nausea and vomiting. I would actually start vomiting before I even got treatment because I was just so nervous. I think they called it anticipatory nausea. I would sit in my biology class and start getting sick without any treatment.
I did have some hair loss. I got my hair cut really, really short so it looked like I just had a really short haircut. It was falling out. But, at any given point, I don’t think I went entirely bald. Ultimately, nausea, vomiting, and the general overall ickiness that I felt [were] my main [side effects].
I just had a really, really sore throat. I actually ended radiation about a week before the last day of classes. I thought it would be cool to take a shot of something to commemorate the end. That was the worst thing I could have ever done because it just burned my throat down.
I went to my radiation oncologist. “I am sorry. I can’t do that,” and he was just laughing. He was like, “I’ve seen it before. There [are] a lot of college students that have come through here who’ve had cancer and radiation. I understand. Here’s the stuff.” He gave me this liquid and then he was like, “Take it like a shot.” I was like, “Okay, fine, whatever. I deserve it. I’m never doing that again.”
A month later, I had no problems. I would say after that, my radiation oncologist was really adamant about testing me for hypothyroidism. He was constantly checking my thyroid. That ended up being a long-term side effect of the radiation treatment.
Getting diagnosed with hypothyroidism after radiation
It wasn’t too bad. It was just understanding that for the rest of my life, I have to be tested for this and make sure my blood work is okay. But other than that, it was just trying to find the right dosage and sticking with a plan [to] make sure that you’re getting the right dosage over time. They walked me through that and then my primary care physician was brought on board. He understood what was going on.
Now it’s just routine where every couple times a year, I go and make sure my thyroid levels are correct. Then they [adjust] the medication [as necessary] to keep it stable.
It helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.
Being a young adult with cancer
What was that like being 19 & having to reconfigure your college life to this?
Looking back, it was probably the best thing I could have done because it gave me normalcy. I think if I moved back home and just stopped everything, I would have been unhappy. Having my friends around and a normal college life was actually helpful. Now, my GPA probably wouldn’t say the same thing, but as a person, it helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.
I actually met someone who had Hodgkin’s, an undergrad who was in law school at the time. The doctors put me in contact with him. He was like, “It seems daunting, but I think with the reduced course, you might be okay,” because he had done the same thing.
I was able to take my course slowed down to less than half and still be considered a full-time student. I took his advice. He was really helpful during that whole time.
I don’t know if I took it in stride. I felt like I didn’t really have a choice so I had to do it. It was probably the best-case scenario for me that I was at a campus that had a really great cancer hospital. It almost felt like it fell into place a little bit so it helped drive my decision-making.
How did you cope with seeing your peers live normal lives?
I found my people. I had some really great friends who were willing to change their lifestyles for me. They knew that I couldn’t go out and have fun on most nights after treatments or when I got back.
My parents would drop me off after treatment. I would go home with them on Friday and then they would drop me back off Monday morning. Monday evening, my friends would come over with takeout and they would just watch a movie with me. It was just really having a support system that helped and allowing my friends to just be.
Sometimes they would come and sit with me during treatments. My parents were there but just knowing that they’re there was nice.
I found my people. I had some really great friends who were willing to change their lifestyles for me.
[Don’t] try to push people away. I felt like I can’t really make friends now because I’ve got all this stuff going on but [don’t] let your mind go there. Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.
It was cool because UNC is a really big sports school. But if [my] platelets were low or [my] white blood cells were low, I can’t go. They were like, “Let’s just do something else.” They were really good about including me in things that they knew that I could go to and I wasn’t going to get sick.
Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.
How did you open up about your diagnosis?
After the first diagnosis, I was pretty open to people about it because it was a huge part of me. I felt anybody that I was romantically involved with should know and just could tell if it was going to be a problem or not
A lot of my friends already knew because I was still talking with the same friends. The new friends that I had made maybe weren’t really privy to it, but I felt like they were really just supportive, good people so I didn’t worry too much.
I honestly don’t know how you would bring it up to people who don’t know. There’s a certain part of your life where you just think you’re never going to get it again so why bother telling people about it.
It’s just a select few where you’re like, Maybe this person should know. I just felt that way, at least with my boyfriend, because we had been dating for a long time and there was something there. I should probably make sure that he knew a lot about my health history.
Was there any talk of fertility preservation or family planning options?
No, not at that time. Doctors never really mentioned it and I never really said anything because I just wasn’t thinking about it. I wasn’t really prepared to ask questions.
Is there anything that you would have done differently?
I wish I would have asked about fertility, honestly. I had just read everything about Hodgkin’s lymphoma, how usually it’s cured, and you never really have to deal with it again.
There was a span of eight years between my first diagnosis and then it coming back. I could have done something. I could have frozen my eggs or I could have prepared for what’s next. Even if I wouldn’t have needed it, it would have been nice to have had that opportunity to know that there is a chance that this could happen.
It’s not really part of the treatment plan going forward and so I just never really thought about it. I wish I would have.
Now, when I talk to other 19, 20-year-olds that are going through this, I’m always like, “You think you don’t need it and you may never need it, but just be sure that you ask about infertility and if there [are] options for freezing your eggs.”
I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.
Importance of knowing your fertility preservation options
At that time, I feel like [the] doctors did what they were supposed to do. They cured my cancer, but they didn’t really tell me what’s life after that. What are the things you might have to deal with later? And it’s not just infertility.
I had hypothyroidism, which they told me a little bit about. But then you have the potential for heart problems, lung problems… There was a blood clot I had that ended up showing its head 20 years later, in terms of things that I had to go through during my pregnancies.
The cancer’s gone but then [there’s] all this other damage in the process that I wasn’t really privy to. You go through your health history and doctors are like, “Oh, okay. Well, that could be a problem,” then you have to deal with it over and over again.
I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.
I didn’t even bother going to my primary care physician. I just knew.
Relapse
What made you think something was wrong again?
I just didn’t feel right. I didn’t even bother going to my primary care physician. I just knew.
I tried to shove a lot of things into a couple of months that I know I really wanted to do. Then I was like, “Okay, now I’m ready to go tell somebody that this is back.” And that’s how that started in 2010.
‘I think I’m going to go to the doctor because I think something’s up.’
Why did you decide to do a last hurrah before seeing your doctor?
I met my boyfriend, who’s now my husband, back in 2006. I had given him an overview of what I had gone through in 2002 and 2003 so he understood what was going on because he knew that I was getting scans and stuff still for that.
Then in 2009, I started grad school. In the back of my head, thinking, I really want to get through grad school. I want to marry this guy and start my life. When 2010 rolled around and I started feeling a little off, I was like, Uh-oh. Maybe this isn’t the plan anymore.
I scheduled a vacation for the summer between my 2009-2010 grad school year. There were a couple of steakhouses I wanted to eat at because once you’re on chemo, you don’t like to eat so I went and ate at some of my favorite places.
Then finally, I was telling my parents and my boyfriend, “I think I’m going to go to the doctor because I think something’s up.” They knew that if I were saying something, I probably felt it.
I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.
Why did you decide to wait?
How much worse can it get in two months? I went a whole year without treating it last time so if I spend the next two months just trying to get things settled, then I felt like I could do it.
I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.
Was there a worry?
There was [a] worry I wouldn’t be able to enjoy, that my boyfriend would probably not want to stick around — which wasn’t the case, by the way, but it was in the back of my head. This is just going to wreck my life and so let’s just savor it for the last few months and then deal with it as it comes.
Official relapse diagnosis
I was like, “What stage is it?” They were like, “We don’t stage. We just say it’s recurrence.”
Treatment
ICE chemotherapy & autologous bone marrow transplant
They were pretty much adamant about [getting a bone marrow transplant] from the beginning. That was going to be the endgame
[With] ICE chemotherapy, I did a lot of my own research and I realized that it was pretty serious. They told me, “It’s intense. You would have to be in the hospital over three days in order to get the treatment.”
I don’t remember how many weeks I had in between, but it took a good chunk of that time to get healthy enough to even think about having the next one. There were a couple of times where we had to postpone, which didn’t happen with ABVD.
They had to postpone because my platelets had tanked or I [needed] blood transfusions and wasn’t healthy enough to get the next treatment. I had never had a blood transfusion before then. I can’t even keep track of how many blood transfusions I had over the span of those ICE treatments.
Then being really, really careful about not getting sick. During the pandemic, I was joking around with a friend, “This was my life in 2010 — always wearing a mask and never going anywhere,” because you just didn’t want to get sick. You wanted your next treatment because you didn’t want to postpone it again and again.
No evidence of disease
How is it thinking about that?
It seems like time has flown by. It doesn’t feel like it was 12 years ago because some things are still very vivid in my memory and other things are really fuzzy.
Thinking back on it, I’ve forgotten a lot of things as well. I don’t know if that was on purpose or my mind was just like, Maybe we should just shove this way far back because you don’t want to remember it.
Fertility preservation & family planning
What was the big difference between being diagnosed at 19 & again at 27?
At 19, it just wasn’t there at all. You spend a lot of your teenage years thinking, I can’t get pregnant. Don’t get pregnant. Then in [my] 20s, especially since I was in a committed relationship, I thought, Oh, I can see myself being a mom. It was pretty much at the forefront for me and the doctors as well.
The second time around, they actually mentioned about fertility and the impacts that my treatment would have on it. It went from being nothing to something that was talked about quite a bit when I was older.
Did you bring up fertility or did somebody else?
The doctors actually brought it up, but they brought it up in a really weird way. I couldn’t quite comprehend it at the time. I had to start treatment pretty quickly the second time around so there wasn’t really time to even think about freezing eggs or anything like that.
I was just laying in the hospital bed and a fertility specialist came in. I just received some of my ICE treatment and they were like, “Freezing your eggs is just not an option for you. This treatment, along with the bone marrow transplant, is underway and there’s just not going to be an option for you to have children.” It’s what I took from it. My mom, who was sitting there at the time, was just like, “Wait. She’s not really comprehending this,” because I was on medications.
They definitely had to explain it to me a couple of times. My BMT doctor also reiterated, “Let’s just get you better and we can talk about this later. But as of right now, there’s not going to be too many options for you.” I just took it as I guess I’m not going to have kids.
At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later.
How did you process the news?
It was just like mark this down. It’s another thing that’s just not happening. Okay, I guess grad school is on hold. Not happening. Maybe I’m not getting married. Why would this guy stay with me now that I can’t have kids? Let’s just keep marking things that aren’t going to happen.
At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later. You get a lot of bad news all at once and so it was a little bit disheartening. But the real thing that I really [wanted] was just to be done with the treatment. Let’s just get this over as fast as possible.
I talked to my parents quite a bit and my siblings. A couple of times, I called my dad crying, “All my hair’s falling out and all this is happening.” He would just be, “This is par for the course. Why are we crying about this?” And I was like, “Well, you know…” And he’s like, “You just have to keep pushing forward.”
I think it just all stemmed from because he had gone through a lot of stuff that I couldn’t even imagine. He was just like, “Sometimes, things just don’t go your way and you just have to go through it anyway. Just know that it can be better after it’s done. But it’s going to be worse before it gets better.”
There were just people like my dad who were like, “You can’t get down on yourself too much. Otherwise, you’re not going to get through this.” I think that was helpful to have that perspective of somebody who can just be like, “Pull up your big girl panties and just get it done.” That’s his mentality and that helped because otherwise, I would just sulk around and do nothing.
Feel bad for yourself, cry, and then get up and move on. Okay, fine. I’ll feel sorry for myself today and then I’ll move on. And so I tried. I tried waking up every day and like, “Okay, what’s the one good thing I’m going to do today that makes me feel good about myself?”
I went in for one of my scans, maybe my third-year scan. “Look. I got married and I’m thinking about having children and I just need to know my options. I don’t know what they are.” He’s like, “Oh, okay. Let me refer you to a fertility specialist that works with cancer patients.” I was like, “That would be wonderful.” Why do I have to ask for this?
He referred me to her and that got the ball rolling on understanding what my real options were. If I really wanted to have a kid, then let’s make this happen and this is how it’s going to happen.
It’s interesting because it’s still very much related to cancer. I wouldn’t be infertile if I hadn’t had cancer. It keeps coming up over and over again.
First, she wanted to see physically where I was from a fertility standpoint. She did ultrasounds, took bloodwork, and confirmed what we had suspected that physiologically, I was going to be able to have a child in the traditional way. She confirmed all of that.
Then she took me and my husband and [went] through the different possibilities. There was surrogacy, adoption, frozen embryos that can be donated, and IVF with an egg donor. She laid out all those things and was like, “I think you would be a perfect candidate for IVF with [an] egg donor.” Then we just talked through what that process would be and why she thought that that would be a good option for me.
I could carry a pregnancy and then my husband could actually be the father of the child. We could plan it so that we could use multiple embryos from the same donor and they would actually be full siblings to each other.
She said, “The good news is you have a cute uterus.” I was like, “Oh, okay. Good to know. I didn’t know they could be cute.” The silver lining is that [I] have things that are still functioning in [my] body so let’s go, let’s use them. I thought that was pretty, pretty nice.
The bad news is that I was fully in menopause. My ovaries were not working. She even showed me a picture. They’re supposed to look like chocolate chip cookies, I think, and mine didn’t.
She reiterated, “A lot more people have to use this route than we think,” and made it sound more like it’s a normal way of doing things. “It’s being done, people are using it, and it’s working so it’s going to work for you. We have a really high success rate with this.” She was just really confident and very hopeful that this was going to be the answer.
During the whole conversation with me and my husband, [there] was never a moment where she didn’t think there was an option. “We’re going to get you pregnant. You’re going to have a baby. This is the way to go.” She was just very confident.
The whole time, I was like, “Well, I don’t know if this is going to work or anything.” She was just like, “Yeah, it’s going to work. I know what I’m doing.” It was just refreshing to have someone who was just like, “This is done all the time and it’s going to happen for you, too.”
I also have a little bit of reservation. Will she be a little bit upset that I’m a cancer survivor and that maybe I shouldn’t be having kids? But none of that came up. “You’re fine. You’re five years out. Your doctor gave you the go-ahead. We’re doing this.”
Deciding to have children after cancer
Should I bring a child in this world that may have a mom that has cancer for [the] third time? A part of me was like, Maybe I shouldn’t have kids because I don’t want to put them through that process. But I thought, If I live that way, then I would never do anything.
I just thought through that a lot more because I wouldn’t want a child to have to see me suffer. But I quickly understood that I couldn’t live my life thinking that it would show up a third time.
It was just understanding that I got to point B in a really interesting way. And it was miraculous in some instances. When I think back about all that I went through and now that I look at my kids, I’m like, “They are truly unique and never would have existed had my story not existed.” When I think about that, it’s almost as if I would go back and do it all over again to get the same exact thing because it made it all worth it [in] the end.
It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?
Before we could do the IVF, we had to go through counseling because it’s very important that your children understand where they come from and they were giving us pointers about how you talk to them about it. I just always tell them, “You are incredibly special because you came around in unfavorable circumstances. A lot of things had to happen for you to get here in a weird kind of way and so that kind of makes you extra special.”
It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?
Process of choosing an egg donor
It was way easier than I ever thought it would be. They were really on top of it — the fertility doctor, all of her nurses. They walk you through the whole process and make it super easy.
They already had donors lined up that they thought met my expectations. I wanted someone who was Caucasian because I wanted them to look like me and my husband. I wanted someone who had a fairly good health history so they test them for a lot of different genetic diseases. As far as eye color [and] hair color, none of that really bothered me. I just wanted to make sure that they were healthy and kind of looked like me; that was my only thing. They were like, “Are you okay with having a first-time donor? We may not know if she’s going to be able to produce eggs or not.” I was like, “Yeah, that’s totally fine, too.”
I didn’t have too many requirements so they had quite a few donors that met the requirements and a little bit more. The donors can tell you about their ambition, their goals in life, what they do now, their personality, what they like to do, if they own pets, and the reason why they’re donating.
This particular donor said she was donating because she watched her aunt go through a lot of infertility issues. She felt because she was healthy and at an age that she could donate eggs that she wanted to do that in honor of seeing her family member go through this.
If this doctor is for real, this is happening… And it did. The first implantation worked.
Fertilization & preparing for embryo transfer
That process was lots of shots, lots of hormones, lots of things to make my body do things that I hadn’t done in years because I’ve gone through menopause at that point. That whole process was just injections and getting my uterus ready for implantation and then sustaining a baby after it was implanted.
There was a little bit of nervousness because if this doctor is for real, this is happening. At this point, I should probably start preparing to be a mom because this is going to happen.
And it did. The first implantation worked.
Financial impact of IVF
I know that they had financial help. You could pay over time or you could pay a set fee for three tries or something like that. I had opted out of the three-try one just because this is a lot of shots and I don’t know if I can do this for three rounds of IVF.
Because I had known that this was going to be the issue, we had prepared pretty well financially. When we met with the doctor, we knew it was either going to be adoption or something else. We knew that we would have to save up some money if we were going to do this and so we had been saving for quite some time.
The interesting thing is that [with] the first one, nothing was covered. It was a good sum of money.
Since then, I think some insurance companies do actually cover infertility because for my daughter, I was able to cover the implantation. Things have changed a little bit. I joke around with my kids that I need a return on investment because [they’re] expensive.
Importance of fertility preservation options
It’s just part of the cancer journey. It’s part of the treatment, really, and I don’t think people understand that. It just should be a part of how you treat it.
A lot of times, it ends after that last scan and you’re on your own. But it just really isn’t that way. There’s a ton of things that aren’t included in that treatment plan that should be. And I don’t really know how to fix it because I don’t know if that’s [an] oncologist issue. There’s just no guidance after or any help or understanding of what specialists [I] should have in place for the next 10 years in my life because I’ve gone to all kinds of specialists since then.
Just some understanding of what’s going to happen next and the things that you need to look out for because not every primary care physician is going to know what you need. You need to know yourself. It would be nice to have somebody guide you through how to advocate for yourself and where you need to go when you have these things happening to you.
I just tried to do a little bit every day. If I didn’t feel like doing any of it, I didn’t really get down on myself.
Words of advice
One of the things I really took to heart during that time… One of the PAs (physician assistant) who had had non-Hodgkin’s lymphoma and had worked with a lot of cancer patients came into my room. I was getting really down. He was like, “If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.” I was like, “It’s like prison here.” And he was like, “Yeah, like prison. Come in, do your time, but don’t lose hope.” And I was like, “Okay.”
I felt like I basically handed my body over and said, “I have no control over this thing anymore. You guys do your thing, get it better, and then hand it back to me when it’s done.” I just checked out mentally the whole time I was in my BMT. It was almost as if I was detached from what was going on because I had no control over it. It was just a really weird experience.
My advice would be that you just can’t lose hope and just do your time because there’s literally nothing else you can do. I think that was what he was getting across. Being here is all you can do right now. Just be here. That’s what I took to heart. Just sit here and do my time. There’s nothing else I can do.
I just tried to do a little bit every day. I didn’t try to make crazy goals for myself. I would say to myself, “Okay, you get up and you get a shower today and that’s a win.” And so I would just try to get up, shower, and then go back to my bed. But that was a win. I got up and showered. Just make small goals.
One day, I was like, “Okay, now you’re going to go for a walk around the neighborhood for five minutes and that’s it.” Tiny little steps day by day, trying to do something that maybe I didn’t do yesterday.
If I didn’t feel like doing any of it, I didn’t really get down on myself. I was just like, “Today’s not the day,” and tried to start over again the next day. Every day was like a new day, basically, where I had one small goal and that was it. I didn’t really get down on myself if I didn’t achieve that goal, but I tried really hard to see if I could.
‘If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.’
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
Cancer details: Diagnosed at age 25 1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Kris was diagnosed with stage 4 Diffuse Large B-Cell Lymphoma.
He shares what it was like finding out his cancer diagnosis on his own, having to retire earlier than planned and learning his twin brother was diagnosed with cancer, too. He also shares his experience going through treatment alone, due to COVID restrictions, and what it was like dealing with isolation.
Name: Kris W.
Diagnosis:
Diffuse Large B-Cell Lymphoma (DLBCL)
Staging: 4
Symptoms:
Pain in the side of the abdomen
Treatment:
R-CHOP chemotherapy
If you even have just this remote idea that there could be something amiss inside your body, get it checked out. There’s no reason not to.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
There was pain that would keep me awake. I could sleep most nights but this one particular night, I woke up at about 3 o’clock in the morning and it just wasn’t feeling right.
Pre-diagnosis
Share more about yourself
I was a senior developmental engineer in electronics for a total of about 40 years. Since the cancer diagnosis and the treatment, I’ve had to retire. But I really wish I hadn’t had to retire.
I have an identical twin brother and I have a sister that’s 10 years older. My brother really got me through the treatment and everything. He [drove] me to the hospital whenever I needed. I had a few infections and spent a lot of time in the hospital during the treatment. I just can’t thank him enough.
Initial symptoms
I noticed that [for] a few nights in a row, I had this pain in my abdomen and in my side. When I [lay] on that side, which I preferred to sleep on, there was pain that would keep me awake. I could sleep most nights but this one particular night, I woke up at about 3:00 in the morning and it just wasn’t feeling right.
There were some things that led up to this. Two months before, I had a blood clot in my leg and they told me, “You can’t take Ibuprofen anymore because of this blood clot. It’s going to make things much worse.”
What was going on in your head as they were performing all these tests?
When they did the CT scan, I thought, Well, that’s a little bit weird. I figured they should be able to see anything in the blood work that would have come up. But they went ahead and did as they saw fit.
We really didn’t come up with a lot other than there was a mass in there. [In] the first scan, the mass was about six centimeters in diameter or two and a half inches. They didn’t know what it was. They were thinking that they had done the surgery there, too, when I had the blood clot in my leg so it could just be a mass of blood… bleed out of the joint where they put the catheter in for my blood clot. They went ahead thinking that that’s what it was, that it was just some sort of a liquid mass and it was not pushing things around too much.
[They did additional blood work.] I think that’s where they started to think that the mass was more solid than just blood floating around.
The diagnosis was diffuse large B-cell lymphoma. That was a shock because I had heard of lymphoma before and it was never good. It was never in a good light.
Diagnosis
Finding out the results of the CT-guided biopsy
There was a listing of what the biopsy found — a bunch of numbers, CD 20s, and all kinds of different things. The diagnosis was diffuse large B-cell lymphoma. I looked at that, went back up to the top, and said, “Wait a minute. Is this my file? Did I accidentally get in somebody else’s file?” That was a shock because I had heard of lymphoma before and it was never good. It was never in a good light.
[The] first thing I did was call my brother and go, “Dude, what’s this lymphoma thing?” He says, “What?” I said, “Well, it looks like I have cancer.” And he says, “Oh, come on now.” And of course, I was interpreting the chart so he was like, “Well, who are you? You’re not a doctor, you know.” And I said, “But it says pretty clearly: lymphoma.”
I had a doctor’s appointment the next day with the oncologist. I, of course, had a little trouble sleeping that night, but I didn’t really get sad about it. I was thinking, They’ll just tell me that it was a mistake and I’ll carry on. When I went to the doctor, they said, “Oh, no, that wasn’t a mistake. And we really do want to start treating you pretty soon.”
I knew what my diagnosis was before they actually told me. I spent the rest of the day looking everything up online, but none of them made any sense to me.
They started to set up all of the appointments outpatient. It was going to be three to four weeks to start chemo and another five weeks to do the PET scan. I was going, “Oh, can’t they get me in any sooner? I mean, it seems like I need it.” Then they said, “No, you really do have this,” and I thought, “Okay, well, we’ll wait.” They were going to try and bump them up sooner and let me know. But at that point, they had already said, “You’re not working for a while.”
How did you feel when they said you’re not going to work for a while?
The feeling was, “When can I go back to work?” I had intended to work another 10 years if I could. At the company I retired from, I was going into 10 years total with them. I had worked with them in the early 2000s, then I left, and came back. I told them I was planning on working at least 10 years. I want to work for 20 years if I can. My brain will hold out. But obviously, that wasn’t going to be the case.
I knew what my diagnosis was before they actually told me. I told them, “Nice system you got where you find out just ad hoc online that you’ve got cancer,” but they talked their way around it pretty well. It doesn’t happen all the time, but they’re trying to figure out a way to make it different.
It was interesting. I spent the rest of the day looking everything up online, but none of them made any sense to me so I just carried on. “I’ll find out tomorrow what’s going on.”
There really wasn’t a lot of information that I got [on] the first visit. They handed me a folder that was probably about [an inch] thick and I didn’t read any of it. The last thing I wanted to do is dig into a bunch of medical jargon that I didn’t understand anyway.
I talked to friends that had been through similar things and that was a lot of help. My brother’s in-law’s family had just a bad few years with cancer.
I had intended to work another 10 years if I could. My brain will hold out. But obviously, that wasn’t going to be the case.
The importance of having someone with you during appointments
It was incredible. [My brother] was taking me to all my doctor’s appointments so he could be there as a witness. I’ve heard so many people on The Patient Story videos say [that] after they had said “cancer,” everything else was gone.
The doctors didn’t really go into much detail. They just said, “We’re going to do chemo and it’s going to be R-CHOP.” They told me what drugs they were and all that. They said that the first one that I get is going to be a weird one because they have to decide how long the treatment has to be.
The first chemo in the hospital was 16 hours. When they figured out how fast I could take that first drug, they cut it down to seven hours. All of my chemo treatments after that were seven hours.
There really wasn’t a lot of information that I got [on] the first visit. They handed me a folder that was probably about [an inch] thick and I didn’t read any of it.
Being admitted into the hospital for treatment
They called me and said, “We’re admitting you to the hospital. We have a room for you on the oncology worked in. We’re going to do all of the initial stuff inpatient — the first chemo and the PET scan and so on — because we can get you in much sooner.” They didn’t really say why they wanted to do it so much sooner. I just assumed it was some trick that the doctors could use to get me in there quicker. I appreciated it because it was much sooner than planned.
It came as a surprise, but I was ready for it. They told me that that was going to probably happen. My brother was able to hang out with me while all of that was going on. He took me to the hospital and we got all settled in the room. I was only there a few days, I think four or five days, and he was there every day to visit me all the way until March when they closed down visiting.
My brother really got me through the treatment and everything. I just can’t thank him enough.
Side effects from chemotherapy
They never really did define the infection that became septic. They were very concerned about that. I spent a few days in the hospital with each of those. It pushed out my chemo treatments by about the amount of time that I was in the hospital, usually about a week or a week and a half.
I was really looking to get those over with and see what happened because otherwise, I had no real side effects from the chemo. I was a little tired the day of the chemo and maybe a little bit the next day. But then I had a lot of fatigue from other things going on, too. All the drugs that I have to take and so on.
They gave me Neulasta. I had to go to the infusion center again and get shots for three days.
I’ve been shaving my head for so many years that I wouldn’t notice that. But I’ve always had a goatee or a full beard and it’s always been like Santa Claus in the natural sense, where the hair grows straight out and really thick. When I started growing my goatee back after the chemo was done, it was going sideways.
I heard that my dad, when he was going through chemo for his lung cancer many years ago, lost his hair. He had really white, perfectly straight hair. His hair grew back really curly. I thought, If I grew my hair out, it would probably be really curly because my hair was always really straight. Now it has this curl right down at the bottom and it all ends up over on the side. It’s not a big problem, but I just thought that was hilarious that it wouldn’t grow straight now.
I’ve never had heart issues, but I heard that it could have happened with the chemo, but I haven’t seen any of that come up.
How did you feel about losing your hair?
It didn’t bother me at all. I think I look funny without hair on my face, but everybody else said, “You look great!” I didn’t have eyebrows, eyelashes, or anything. The nice thing was I didn’t have to trim the hair sticking out of my ears or my nose. I didn’t have to shave and I thought that was really nice.
What was it like undergoing cancer treatment during the pandemic?
The hospital moved the infusion center to an easier place to get to so that most of us that were dealing with [infusions], which were mostly cancer patients, could just walk in a door and we’re in that area. That worked out really well but that was only one visit out of the six I had.
Then they moved it back to way down the hallway. It was strange because it seemed like there was doom at the end of this hallway. You couldn’t see all the way to the end. But when I got down to the [center], everybody was awesome to deal with. I used to show off my port and have the nurses all giggling.
My sons, I felt really, really bad for them. They were both in retail where they dealt with the public every day. Neither of them wanted to visit me because they just assumed that if they gave me COVID, I was going to die.
How was it like going through this experience alone due to COVID restrictions?
My brother found other ways to deal with it. When I wasn’t in the hospital, he would come meet me at my house and help me clean up. We’d have some takeout when they figured out how to do that with COVID. He probably took more time to come to my house to make me feel like there was somebody there.
I had a nurse that came to my house once a week to maintain the bandages and the surgical point for the nephrostomy tubes that I had to help with my kidney failure. I got to know her pretty well and she was a lot of fun.
My sons, I felt really, really bad for them. I knew they wanted to come and visit me but they were both in retail where they dealt with the public every day. There wasn’t any way they could [work from home] since they were dealing with the public every day. Neither of them wanted to visit me because they just assumed that if they gave me COVID, I was going to die. And they were probably right. I don’t know for sure.
There was always somebody that I could talk to though. There was no point where I was suicidal or anything like that. The doctors, at one point, were calling me every day.
How to deal with the feeling of isolation
I’ve always been a happy person, even though I was diagnosed in 2014 with ADHD. I guess I was just so used to being alone. It didn’t bother me. I didn’t let it bother me at all. I felt the same loneliness that I had before I had the disease.
Every once in a while, I’ll go out for drinks with my friends. I had both men and women that I could talk to about anything. I liked working so much [because] I was hanging out with 700 of my closest friends. I knew everybody in the plant. I may not have known their name, [but] I knew their face and what their family history was and everything. I could talk to anybody in that facility and feel better when I walked away.
We ran three shifts so there was always somebody in the plant to go talk to even if it was just about work. It was always good. I like being technical with people and teaching them things. So many of the people in that facility appreciated the fact that I would talk to them as somebody at their level or try to bring them up to my level of knowledge. They all appreciated that a lot.
I’d give anything to be there again, to be there right now.
I guess I was just so used to being alone. It didn’t bother me. I didn’t let it bother me at all.
The impact of having to retire early
I worked until January before my doctor finally said, “You’re done.” There were several things that led up to it. One of the drugs that I was on for ADHD kept me awake during meetings and also kept my brain working at a point where I could do my job as I felt that it needed to be done. Everybody said they didn’t notice that I was incapable of doing my job. I felt like I was incapable.
When my doctor asked me if I could do it without Adderall, I said, “No, I can’t. I’ve got to have the Adderall.” But I’ve been losing teeth from grinding my teeth so much and I felt stressed in my head even though there wasn’t anything to stress me out.
That drug was having a profound effect on my left kidney — that was the one that was struggling after cancer, even after the treatment. He said, “You’ve got to do something else.” I said, “We’ve tried everything else and nothing else worked like this.” He said, “Well, then you’re not working anymore.” “What?” He said, “Nope, we can’t do it. It’s going to completely destroy your kidney.” And I said, “Well, I got another one.” He said, “No, that’s not good enough. We don’t do that.”
I went out on medical again in January of ’21. By December of 2021, I finally decided I was going to retire.
It’s been a lot rougher because the medical leave, I knew that at the end of it, I was probably going back to work. And I was so excited to go back to work after the cancer treatment. My doctor said, “You really shouldn’t. You should just retire now.” But I don’t want to and we couldn’t come up with a really good reason to present to the Social Security Disability Board because my legs hurt and they’re weak. Why? We don’t know. And to this day, we still don’t know.
The thing that finally got me through all of it was chemo brain, which was really weird because I was an advanced-level engineer and I sat at a desk staring at a computer all day. I’d get up and walk around once in a while, but apparently, it was the best situation because I was approved for Social Security Disability two weeks after I applied. I’ve heard people that have gone for years trying to get disability insurance from Social Security with really obvious physical problems. I was really surprised by that.
I’d give anything to be [at work] again, to be there right now.
Twin brother gets diagnosed with bladder cancer
He got cancer right as I was coming out of it and that was disturbing.
We were sitting and talking in my house. I said I had so many issues with [my] kidney even after all the treatment [and] the UTIs. I had stents in the ureter for a little while [and a] nephrostomy bag and everything on me for over six months. With all of that, he told me that he was having trouble going to the bathroom and I said, “Get your butt into the doctor right now and don’t sidestep it. Tell them exactly what’s going on.”
He went to our doctor and did a urinalysis. They said, “Wait, there’s cancer cells in there,” and discovered he had bladder cancer but it was really early. He went through one round of chemo, but they put it right in his bladder. Then he did immunotherapy for, I think, eight visits or something. It was almost every three weeks, almost like my chemo. Then they set up a maintenance plan for him after they told him that he was cancer free. We were celebrating that one, too, but mildly celebrating because it was still COVID.
He came out of it really well. I am just so happy that happened because there were a couple of scares where they thought it might have gone into the muscle tissue and I’ve heard that that’s not a good sign.
Getting a second opinion post-treatment
The last time I’d seen the doctors at Beaumont, at the Rose Cancer Center, in one sentence they told me I was cured and in another sentence told me I was in remission so I didn’t know what to believe. This was partially the reason that I went to Karmanos.
They also told me that Karmanos would be the next step if the cancer did come back, that Beaumont could no longer perform the treatments. They couldn’t do the stem cell transplant or anything if the cancer came back.
I set [it] up with Karmanos on my own. She had seen all of my records from Beaumont. They had access to my online chart. When I went into her office, I said, “I don’t want to have baby powder thrown up in the air and everything else to make me so welcome here. I want to know what’s really going on.”
It was humorous, the story. She said, “There’s a 65% chance that your cancer is going to come back.” I said, “Really?” She said, “That means there’s [a] 45% chance that it won’t.” And I said, “Well, I’m not as smart as most doctors, I don’t think, but there would be 35% that it won’t.” And she said, “Oh, yeah. You are an engineer, aren’t you?” And I said, “Well, yeah, but that one’s easy enough.” But so far, I’m good.
The other thing was that at Beaumont, they said that I was stage 3 to 4 and that they don’t really stage these things because there’s no real help in the treatment. I thought that was a little bit weird.
Then Dr. Sano at Karmanos said, “No, you are not stage 3 to 4. You are late stage four.” I said, “Oh. Well, what does that mean?” She said, “You are probably within a month of dying.” And I said, “Oh, I never even thought about that.” She wasn’t brutal about it or anything. I was thinking it was a quota they had to keep. She said, “That’s sometimes a quota thing. I’m not going to admit that any kind of a medical institution would do that.”
She was treating me as somebody on the same level, I’d like to think. She realized that before I had chemo brain, I was pretty smart. Since then, they’ve been pretty good. I’m afraid to say that she has left the hospital at Karmanos so I [will have to] see a new doctor next time. And I’m not looking forward to that because she was so awesome. She was really young, too. She was under 30. It was just nice talking to somebody that could tell it straight. I don’t want to sugarcoat it and that seemed to be what Beaumont was really good at.
Why did you start watching The Patient Story videos?
I was looking for confirmation that I was going to make it through all this. I’m not the type of person to be scared of a lot of things and this one scared me a little bit. I’ve been riding a motorcycle for 50 years and this one scared me a lot more than getting out in traffic on a motorcycle.
The videos were quite helpful in how people managed it, especially the thought of it coming back. When I started watching The Patient Story videos, I had already been through my chemo and they told me that my cancer was gone. Of course, I was happy about that but they didn’t really tell me the rest of the story until I started seeing a different oncologist in a different cancer center. She was the one that told me, “You could be in deep trouble here, fella.” She was very nice about it. I’m not saying that she was brutal, but it was something I needed to hear because I had no idea what my chances were of making it through without cancer coming back.
[The] interviews, especially the young people, got me through a lot of the secondary side effects that I have from the chemo and just making sure that I’m not alone.
I was looking for confirmation that I was going to make it through all this. I’m not the type of person to be scared of a lot of things and this one scared me a little bit.
How important was it to bring those moments of lightness?
It was important to me. I like to see everybody smiling. I’m the type of person [who] when I walk down the hallway at work and pass somebody, I always smiled at them. That was different after COVID hit, of course, but I still tried it and nobody responded.
I’ve always been that way, even [when] traveling. I always smile at everybody and people seem to smile back, even if they look like they were in a bad mood to start with. I just enjoy that. That’s something that I feel I need to do. And it helps. It helps me if nothing else.
Why men typically hesitate to go to the doctor
My brother is one of those tough guys. He’s really good with his hands, which was apparent in his avocation when he could still work. He was in printing and machine repair. He was an awesome mechanic. He was that kind of guy, very tough, and he wouldn’t wouldn’t admit to anything.
He was just like my dad. My dad, when he found out he had lung cancer, it was way too late. They just said, “Well, how long do you want to live?” He took the chemo treatments and everything. He lived for 15 months.
With Kurt, he would wait until it was killing him. He’s had two heart attacks and both of them were like, “Why didn’t you come in when you actually had the heart attack?” “Well, I just thought I needed an antacid or something.”
Don’t let it slide. If you have a pain that doesn’t feel like normal pain, have them look.
How to convince someone to go see a doctor
It was easy after all that I had been through. At that time, he probably heard me whimpering in the bathroom when I had to go because it hurt so bad.
For me, it was — my back hurts, yes, but not in this spot. In this spot, I’ve never felt that pain before. Don’t push it aside, especially as you start to get older.
Getting those infections that led to the sepsis, when the actual sepsis set in and my brain wouldn’t work, I was stumbling around the house and my brother’s trying to keep me from falling. I’m doing these calculations in my head that make absolutely no sense. It was like I was at work, but I wasn’t where I work. I would have probably just said, “I’m just weird, you know?” And my brother said, “No, I think we’re going to the hospital now.” He loaded me in the car and we got there. The nurse did all my vitals. My blood pressure was really low and my heart rate was really high. That was in the throes of it.
Don’t let it slide. If you have a pain that doesn’t feel like normal pain — because I know every man has some pain that he doesn’t admit to or that’s been around for 20 years. “It’ll be okay.” It probably won’t be, but if another one comes up, have them look at that one. It’s simple. It’s half an hour at a doctor’s office and you’re done with it or even a couple of hours at an E.R., if you have one that’s not too busy.
Most of us have medical insurance now. And even those of us that don’t, if you do find out you have cancer, I’m sure with a lot of the lymphoma societies, there are ways to get financial help. I haven’t needed it, thankfully. Just get it done.
Make sure you get diagnosed. If you even have just this remote idea that there could be something amiss inside your body, get it checked out. There’s no reason not to.
