Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Paula initially experienced painful gas, irregular bowel movements, and eventually blood in her stool. She was often dismissed by doctors who attributed her symptoms to stomach flu, hemorrhoids, or irritable bowel syndrome. As her condition worsened, she became anemic and experienced severe pain, weight loss, and fainting spells.
After years of being misdiagnosed, Paula was finally diagnosed with colorectal cancer in 2014 after a series of urgent care visits and a failed colonoscopy. The tumor had been encapsulated in her colon and despite initial fears, it had not spread to other organs or lymph nodes.
Paula underwent emergency surgery to remove the tumor. Although doctors anticipated the need for chemotherapy or radiation, they were able to successfully remove the tumor and 34 lymph nodes. Paula’s cancer was found to be stage 3, but it had not spread to her lymph nodes.
Throughout her journey, Paula faced multiple challenges, including medical bias due to her race and sexual orientation. She experienced homophobia, racism, and misogyny, which contributed to delays in her diagnosis and treatment. Despite these challenges, she found strength in her community and in sharing her story.
Paula emphasizes the importance of early screening, particularly for those with a family history of colorectal cancer and for marginalized communities. She advocates for self-advocacy in healthcare, urging others to push for fair and humane treatment. Paula believes in the power of survival and thriving with cancer, encouraging others to know their family history, get screened, and not be afraid of a cancer diagnosis. She stresses the importance of treating everyone with dignity and respect in healthcare and encourages individuals to take control of their health.
Thank you to Johnson & Johnson for its support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I had all the signs and symptoms that they tell you to look out for when it comes to colorectal cancer, but at the time, I didn’t know what they were.
Introduction
I’m in love with my best friend and partner, Lara. We have been together for 38 years and married for 10 years. I’m a cat mom to a little cat named Trixie.
I enjoy dancing and singing. I’m a Duran Duran fan and that’s how I met my wife. For our 38th anniversary, we went to their 40-year celebration in Birmingham, England.
I’m also a great cook and I have a collection of amazing cookbooks. I’m trying to make my way to some of the best restaurants in the world.
Pre-diagnosis
Initial Symptoms
I had all the signs and symptoms that they tell you to look out for when it comes to colorectal cancer, but at the time, I didn’t know what they were.
In the early days, I always had painful gas and weird poop. When I experienced them, I would automatically blame what I ate and drank, so I would dismiss them a lot of times.
But then I started to have more painful symptoms, especially with the gas. I told my wife that I felt like I had gas going up and it was getting trapped. There were times when it hurt so bad that I wanted to scream.
I started seeing more blood. I went to see a doctor who said I probably had hemorrhoids.
PCP Appointment
I started going to the doctor by the end of 2012. I went to my primary care physician, but he didn’t think much of it at the time. When the pain was bad, I would get told that I probably had stomach flu.
Symptoms Worsen
I started to see signs of blood in late 2013. Sometimes I would be straining to poop. Other times, I would have diarrhea. I didn’t have my regular PCP at the time, so I would see whoever was available and they told me to change my diet. When I told one doctor that I saw some blood, he thought I might have stomach flu, so he gave me antibiotics.
By 2014, I started seeing more blood. I went to see a doctor who said I probably had hemorrhoids, so whenever I saw blood, I assumed it was that. I also started having bad pain and being anemic, but I didn’t know it then. I was cold all the time.
Being Dismissed
They said things that a lot of people under the age of 50 would be told because they were too young. “You probably have IBS.” “It’s probably hemorrhoids.” “You just have gas.” “I’m sure it’s nothing. You’re too young.” I heard a lot of that over the year.
By the time 2014 came around, I had been on antibiotics for nine months from different doctors I had seen since 2013.
There were times when the pain would be worse and I would have to go to urgent care. I went at least six times. The first few times, they would say I had gastritis or something stomach-related and send me home with antibiotics and painkillers. The last few times, I was bent over and freezing because I was anemic. I started to lose weight and ended up losing 45 lbs.
I have experienced a lot of bias and straight-up racism with medical care.
The doctor came into the room and before he even said his name or mine, he said, “I don’t give drugs in this room.” My wife took the doctor out and started yelling at him in the hallway while I sat there, thinking, Don’t yell. They will not help me if you yell.
I have experienced a lot of bias and straight-up racism with medical care. In 2014, I had doctors ask, “Did you tell me you were gay? Listen, it doesn’t matter what’s wrong with you because you’re going to hell.”
Losing Her Job
I got a job that year, but I was having such a hard time because I couldn’t keep up. Then I started to see my hands turn white and thought I was working too hard and planning for our wedding was too much. But the doctors kept telling me that I was okay.
I started getting depressed because I didn’t feel good. I felt that I wasn’t pulling my weight or helping my wife like I should. I was telling people I couldn’t do things, but the doctor said I was okay so it was starting to mess with my head. I didn’t want to tell people when it was bad, so I was hiding it, which made it worse.
I ended up losing my job because I kept calling in sick.
I was so sick and dizzy that I could barely see and stand up.
Diagnosis
Turning Point
The day after we got married, we went to a Broadway play, but while we were there, I felt terrible. My colon was becoming completely blocked and I was starting to have serious complications. By the time the play was over, I was so sick and dizzy that I could barely see and stand up. I was shaking, my body was red, and my skin was hot.
When we got back to my best friend’s house, I ran past the door and barely made it to the bathroom. I had the most humiliating accident. I was lying on his bathroom floor and knew that this was bad. I knew something was wrong.
Around January, I started to have fainting spells. I went to an urgent care on a Thursday and said, “Ma’am, I don’t care what you say. Nothing is coming out of me but blood. Nothing!” The person behind the counter got a nurse, who came out and said, “I’ve seen some of your records. Has anybody given you a FIT test?”
I didn’t know what a FIT test was. She was a bit worried. She said, “You probably ate something red, but I’m going to give you this test. Unfortunately, we don’t have a lab here, so I will not have the results until next week.”
I was in agony and stayed in bed all weekend. I was going back and forth to the bathroom and blacking out. I called my wife and we went back to the ER. This time, I must have looked bad enough because they kept me. I still had a 13-hour wait, but they said, “Get her a room. Get some scans. We’re going to do a colonoscopy.”
I don’t remember much after that. I was so sick that they started to medicate me and put me out. When I woke up the next morning, it was time for rounds and the doctors were going to come and talk to me. They did scans, blood work, EKGs, and all these tests, and they tried to do a colonoscopy.
They tried doing a colonoscopy, but they couldn’t get through.
Getting the Official Diagnosis
Around eight doctors came in. My heart started pounding. One doctor said they tried doing a colonoscopy, but they couldn’t get through. I didn’t know what to say after. It was a devastating way to find out I had colorectal cancer.
Reaction to the Diagnosis
What did that man say to me? What did those people tell me? Why did all those people ignore me? How long does this cancer take to grow? Black people have a higher risk of this? I was pissed and it was messing with me as much as the cancer was messing with me. I was mad and when I’m mad, I keep it in because I don’t want to hurt other people. Doubt, depression, and misery set in, and I needed to find a way to turn it around.
Treatment
Surgery to Remove the Tumor
They said, “We’re going to do emergency surgery. Based on what we see, it looks bad. We believe the tumor has broken outside of the colon wall. It might have some interference with your liverand other organs. We’re not sure what we’re going to find. We’re possibly going to do radiation and chemo because it looks massive. We might have to shrink it first or we might have to go in, do surgery, clean it up, and fix what we can. We need to decide. We’re going to keep you here because you are completely dehydrated.” I was skin and bones, and an absolute mess.
The tumor board said it looked bad, so we weren’t going to do chemotherapy or radiation, but we were going to do surgery. They brought me back to the hospital and prepped me for surgery. I was there for about four days prior and then a week and a half after.
The tumor was encapsulated in the colon and has not broken outside of the colon wall.
I went in early morning to prep and they told us that surgery would take 12 to 14 hours. They said, “We believe you are stage 3. When we go in, we might have to take out your uterus. We will take out whatever the tumor has affected. We will take out part or most of your colon. You will probably have a permanent ostomy. We may have to take out part of your liver. If it has gone deeper into the stomach, we will decide from there. We will do what we must do and that’s all we can tell you right now.”
When I woke up, the nurses came over and said, “Ms. Chambers, your doctor will explain everything.” He came in and said, “When we got in, it wasn’t what we thought.” Lara said the doctors came to her about four hours into surgery. They found that the tumor was encapsulated in the colon and has not broken outside of the colon wall. My body was completely swollen. I was blocked. They took out 34 lymph nodes. The whole surgery took 5 ½ hours. When they got the pathology back, there was no cancer in any of the lymph nodes.
Genetic Testing & Family History
Once my doctors knew that I had colorectal cancer, they did all the right things. They asked all the questions, especially my family history. They asked me repeatedly.
I decided to stay at the county hospital because they saved my life. I found my team, so I continued my care with the oncology and GI staff. In conjunction with UTHealth, they were able to offer genetic testing, which I qualified for and was able to do through my wife’s insurance. They suggested that because they think I have a genetic component. They tested me for Lynch, but it was negative.
That same year, my father-in-law and I did a DNA test and the results said I had another brother. A cousin contacted me and we talked about what was going on and I found out about David. He allowed me to share part of his story. He is an ostomate and was diagnosed with stage 3 colorectal cancer two years before me. He didn’t know about our family because he was adopted when he was a kid. We then found out that there’s a family history of not only colorectal cancer but GI cancers, and it runs deep in the family.
Look at your own biases. Think about when you are at the doctor yourself and how you would like to be treated. Keep it professional but bring in that real spirit of caring.
Experiencing Bias
I experienced homophobia, racial bias, bigotry, and a lot of misogyny, which I think went into some of my diagnoses. A couple of people told me I was hysterical and that it was in my head. It was so freeing to tell my story for the first time. It brought people into my life who had a similar story.
Meeting them and finding that community made me realize that it wasn’t just me and that I wasn’t too young. It wasn’t because I was Black. It wasn’t any one of these things. There’s a way that we look at cancer and at diagnosis, treatment, and preventative medicine that needs to be changed. I had whole conversations about this cancer that has stigmas around it that I did not even know I was supposed to be ashamed of.
I’m a nine-year survivor and in those nine years, I’ve seen things change. Things take time. It’s like pulling a bandage off a wound and having the wound heal. We have to treat it and give it light. We have to uncover some of the issues with which we are dealing. Because we all have our own biases, it’s important for anybody in the healthcare field, especially here in the United States, to look at things within us that we need to look at.
Innately, I think most people who go into healthcare do it because they want to. It’s their calling. It’s also their decision to be in healthcare, a space where they care for people who show up in their rawest moments. It’s important to have grace and a little bit of humility. If someone’s coming to you, they’re putting their trust in you.
Treat people with respect and dignity. Ask them, “Who are you? What happened to you? How did you get here? How can I help you? How did you get to me? Thank you for coming here.” Listen to them and meet people where they are.
The calling in healthcare is not for everyone. We still have laws, rules, and regulations, and we are to treat everyone with dignity and respect. Look at your own biases. Think about when you are at the doctor yourself and how you would like to be treated. Keep it professional but bring in that real spirit of caring.
I want people to not be afraid to go to the doctor. I don’t want what happened to me to happen to anybody.
People need to get screened, especially those in the Black and LGBTQIA+ community. You need to feel comfortable and know that there are more and more places with affirming care and who show it. They want you to know that you are welcome. Look for the rainbows.
Let us know that we are welcome. Ask me what my pronoun is. Is that my partner or my wife? Do not assume. Ask us what we need and be in partnership with us.
I want people to not be afraid to go to the doctor. I don’t want what happened to me to happen to anybody. Know your family history. A lot of gay kids are kicked out of the house when they are young, but a lot of them stay in touch with their family members.
Words of Advice
We need to get screened for colorectal cancer. The screening age now is 45, but if you have a family history of colorectal cancer like me, especially if you have beautiful melanated skin, you want to make sure that you’re talking to your doctors early.
Cancer affects the family and not just the individual. If there’s cancer in the family, it needs to be openly discussed. We need to be tested. We need to know our family history.
Nobody is going to care for you the way you do. Always put yourself first.
Cancer is a scary word, but it’s a word. People survive, thrive, and live with cancer. We’re called survivors from the day that we are diagnosed, so from that day, I had a choice. Am I going to live with this or am I going to let it take me? I needed to find a way to live with it and I did.
But I didn’t want to just live—I wanted to thrive. If cancer’s something that you’re afraid of and it’s the reason you’re not getting screened, you’re doing yourself a disservice.
Advocate for yourself. You have the right to advocate for fair treatment and humane treatment. Nobody is going to care for you the way you do. Always put yourself first. Put the mask on first and take care of yourself first. Nothing can be healthy and whole until you are healthy and whole. If you’re not comfortable, say so.
Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.
Gwendolyn Jackson initially experienced heavy menstrual cycles, back pain, and bloating, which her doctor suspected to be fibroids. Despite regular tests, including an HPV test and ultrasound, her symptoms persisted. Later, clear fluid leakage led to an ER visit where an MRI and biopsy confirmed cervical cancer.
She underwent a hysterectomy, followed by chemotherapy and radiation, but further tests revealed the cancer had spread, drastically changing her prognosis. Severe side effects from treatment, including weakness, nausea, multiple strokes, and heart attacks due to dehydration, required intensive therapy. Despite initial hesitation, she joined a clinical trial at MD Anderson, which has helped manage her condition more effectively than traditional chemotherapy.
Throughout her journey, Gwendolyn faced misconceptions about clinical trials and the stigma of cervical cancer within the African-American community. Financial challenges resulted in losing her job, insurance, and assets. She found crucial support through Cervivor, an online community for women with cervical cancer.
Gwendolyn’s experience highlights the importance of self-advocacy in healthcare, the life-saving potential of clinical trials, and the need for greater awareness and support for cancer patients.
Name: Gwendolyn J.
Diagnosis:
Cervical Cancer
Staging:
Stage 4
Initial Symptoms:
Heavy menstrual cycles
Severe back pain
Stomach bloating
Treatments:
Chemotherapy
Radiation
Tisotumab vedotin (innovaTV 301 clinical trial)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I started having heavy cycles, severe back pain, and bloating in the stomach.
I went to the doctor regularly. When I went for my well-woman exam, I told my doctor. He said, “I think you have fibroids. It’s very common in the African-American community.” That’s what it sounded like to me. “We’ll run some more tests.”
My symptoms persisted, so I went to my mother because I’m that girl who thinks mom can fix everything. I told her, “I’m having very heavy cycles. I don’t know what’s going on. The doctor said he was going to run some tests. They haven’t called me back yet.” She said, “You’re going through pre-menopause. I went through the same thing at the same age. It’s just pre-menopause.”
My cycle wasn’t getting any better. I finally went back to my doctor and he ran some tests. He did the HPV test and it came back negative. I was still having symptoms, so he said, “I’m going to do an ultrasound.” He did and said, “I see fibroids, so we might have to do a hysterectomy.”
In October 2020, while I was at work, I started leaking clear fluid from my vagina. I knew I wasn’t pregnant, but it felt like my water bag had burst. I said, “Okay, this is not good.”
When I saw cervical cancer written on that paper, I lost it. He wrote it down before they even found out I had it.
Going to the ER
I wish I could remember the name of the doctor who saved my life. I don’t know what would’ve happened if it wasn’t for him and that MRI.
When I went to the emergency room, a younger doctor who looked like he had just become a doctor said, “I want to run some more tests on you. I don’t feel comfortable with everything you told me. What can we lose? Let’s do an MRI.”
After the MRI, he came back and said, “I see fibroids, but I see something under the fibroid, so I’m going to send you to a gynecologist specialist, so they can run more tests because I’m not sure,” but he put “cervical cancer” on my paperwork.
I went home and did the worst thing I could do. I went online and searched “cervical cancer.” My father passed away from cancer, so when I saw cervical cancer written on that paper, I lost it. He wrote it down before they even found out I had it.
Diagnosis
Seeing a Specialist
I went to the specialist who said, “We have to run a biopsy. Calm down. Don’t worry. You’re pretty healthy. I see all the tests they’ve done. I don’t think you have cervical cancer. It might just be fibroids.”
Getting the Official Diagnosis
I was diagnosed during the COVID pandemic, so I had to go by myself. On the way, I talked to my mother and my sisters. Everybody said it was just fibroids. My sister said, “We have fibroids. We had to have a hysterectomy too.” They were reassuring me, so that’s what I thought.
I went in thinking I had fibroids and left finding out I had cancer. You will never forget the day. I was diagnosed on November 17, 2020.
I started treatment right after I recovered from the hysterectomy. I thought it was just a preventative measure to make sure I was okay.
Reaction to the Diagnosis
When you first hear, “You have cancer,” it doesn’t register. For some reason, I thought I was exempt because I was helping people with cancer. I started my nonprofit in memory of my father who died from lung cancer. I thought, I eat right. I run five miles every morning. I don’t smoke. I don’t drink. What did I miss?
Cervical cancer has this stigma that people who get it are either prostitutes, have a high sexual drive, or don’t go for their well-woman exam. That’s not me. On the way home, I thought it was something I did wrong.
I wanted to find out for sure first. The doctor put it on the chart and then gave me paperwork for the referral. I was left alone not knowing if this really was true. That two-week wait was difficult mentally.
Treatment
Hysterectomy
They said, “We’re going to go in and remove the whole tumor. After, you’ll do radiation and that’s it. Your life will be back to the way it was,” so that’s what I thought.
I had a full hysterectomy on December 17, 2020. The tumor was 9 centimeters. Before I went in, they were telling me, “You’ll be fine. After we remove the tumor, radiation will take care of everything else.”
After 6 to 8 weeks, I went for radiation. My doctor did some blood work and he was concerned with the results. He said, “The blood work didn’t change. Something isn’t right. I’m going to do an MRI and a PET scan. We have to see what’s going on.”
After I had the hysterectomy, they said, “We’re going to do radiation and you’ll take a chemo pill. That’s just protocol.” I started treatment right after I recovered from the hysterectomy. I thought it was just a preventative measure to make sure I was okay. They were thinking they got everything not knowing that it was spreading.
The chemo was so hard on me. Some days, you can’t get out of bed. Some days, you don’t have an appetite.
Cancer Spread
They found out that my cancer had spread to my hip bone, my legs, and my spine. Imagine going from everything is going to be okay to find out you have 16 months to live.
I said, “God, I don’t want to die. I just had grandchildren. I just turned 49. I haven’t hit 50 yet. I’ve been waiting to be 50 all my life. Please give me more time.”
When they realized it spread, my team had to come back together and treat me differently. They were going to try a bone marrow transplant, but they couldn’t do it because of how mine spread. My insurance would no longer approve it.
Knowing that was all they could do, I got scared. I have anxiety and depression, and I take medication for them now. I’ve never had depression before, but because of all of this, I take medication for it.
Chemotherapy & Radiation
I didn’t want a port. I asked, “Can we figure out something? Is there a way that I can take pills?” I took chemo pills and did radiation.
Side Effects of Chemotherapy & Radiation
The chemo was so hard on me. Some days, you can’t get out of bed. Some days, you don’t have an appetite. You don’t want to eat. You look at food and get nauseous. People don’t understand that. It’s not that we don’t want to. I’m trying. I’m showing up every day and doing the best I can. I used to tell my dad, “Come on, you can eat. Come on, you can get out of bed.” Now, I understand.
The radiation that targeted my cervical cancer was terrible. It burned the lining of my stomach and I kept getting infections.
I used to help my dad button and zip his clothes. I have the same issues now. I can’t button or zip. These are everyday things that we take for granted. I also felt numbness in my fingers and my feet.
I couldn’t keep anything in my stomach. I was vomiting and had diarrhea. They were giving me medication for everything, but nothing was working.
I feel so weak and cold all the time. I always have a heater with me, but I was so, so weak that I didn’t think I was going to make it. My daughter and the guy I was dating at the time were very helpful. They would bathe me and help me get up.
Because I lost so much weight and wasn’t strong, even my doctor was saying, “You’re getting weaker and weaker.” He kept prescribing me medication for nausea. They finally found a prescription that worked for me and that I love.
Radiation burned my face. It was burning and itching at the same time. My face swelled up and blistered. My doctor told me about a cream I could use, which cleared up my face.
The radiation that targeted my cervical cancer was terrible. It burned the lining of my stomach and I kept getting infections. I never want to do that again ever.
Strokes & Heart Attacks
When I went to the hospital, the ER doctor said, “She has high blood pressure.” I said, “No, I don’t have high blood pressure.” When he checked, my blood pressure was very low. When they ran tests, he said, “You’re having a stroke and a heart attack, and it’s because you are severely dehydrated. You need fluids in the body to make all the organs work.” I didn’t even know you could have a stroke or a heart attack from being severely dehydrated.
I had to stop treatment temporarily because I was in inpatient therapy for 14 days.
Recovering from the Strokes & Heart Attacks
I couldn’t walk, so I was in a wheelchair. I had to stop treatment temporarily because I was in inpatient therapy for 14 days and then I went to the Centre for Neuro Skills in Webster, Texas. I always speak so highly of them because they gave me my life back.
When I came in, I felt so helpless. I wouldn’t use the restroom, even though I was there from 9 to 2 o’clock. I didn’t want anyone to take me. I ended up getting a UTI and people there had to tell me, “We’re here to help. We want to make you better. You have to allow us to help you. You’re still the same person.”
I had three mild strokes. They didn’t understand the last one I had. They said, “Usually when you have a transient ischemic attack, you bounce right back.” I didn’t, so he said the last one wasn’t a TIA. It was a regular stroke because I had all the symptoms. I had to go from a wheelchair to a walker to a cane.
Because of the strokes, I can’t remember exactly what chemo I was on.
Joining a Clinical Trial
I met a doctor at one of Cervivor’s retreats. She was different if that makes sense. I knew that she cared about people. She said, “When you get back to Houston, let’s stay in touch,” because she worked at MD Anderson. I said, “My treatments are not at MD Anderson.” She said, “Let’s just stay in touch.”
My doctor never brought up clinical trials. I was doing some research. I kept hearing other patients talk about clinical trials when I went to the doctor. I decided I was going to ask my doctor, but I want to have information before I go in. I wanted to educate myself.
My doctor said, ‘This is great, but these clinical trials are at MD Anderson. If you can get in, go there. I’ll send your medical records over.’
I reached out to the doctor at MD Anderson and asked about clinical trials. She gave me all the information, told me which ones she recommended, and sent an email right away. It was after hours and she was volunteering her hours to help me. She’s still a big supporter of mine. She still checks on me and asks how I’m doing.
I took the information to my doctor and my doctor said, “This is great, but these clinical trials are at MD Anderson. If you can get in, go there. I’ll send your medical records over.”
My dad enrolled in clinical trials at the end and I said, “Y’all not helping him. This is not helping him.” My dad was such a great guy. He said, “This is how they’ll find out if it works for someone else. If it doesn’t work for me, they know it doesn’t work. If I can help someone, that’s what I want to do. I want to help someone.”
I didn’t understand at that time because I wasn’t a patient. But when you become a patient, you feel that way. If it doesn’t work for me, we know we have to try something else. If it works for me, that means this could be it. If I have to go through all of this to make sure it can save me and someone else, it’s so worth it.
When I went to MD Anderson, they had to do all the scans themselves. Their team comes in and speaks with you, and they have a team for everything. Even though I had cervical cancer, they also had a bone cancer specialist.
They redid all the tests I already had to make sure what they had in the file matched. Once they did everything over and made sure I was good to go, they started talking about treatment.
The clinical trial I’m on is called innovaTV 301. It’s a phase 3 study of tisotumab vedotin.
I like tisotumab vedotin better than traditional chemotherapy. It’s not so hard on my body.
Side Effects of Tisotumab Vedotin
They gave me medication for nausea and vitamin B12. So far, so good. The steroids are putting weight on me. I was a little nauseous at first, but the pill helped with that.
I lost my hair. I went bald when I first started and then it started growing back.
With bone cancer, being cold is a no-no for me. It’s very painful, so I wear a lot of warm-ups or layers to try and stay warm. Even in the summer, when I feel cold, I’ll be in warm-ups. I tell people all the time to be nice to people in warm-ups because you never know why they’re wearing them even when it’s warm out.
I noticed my appetite was not the same. I’ll crave something because of the steroids, but when I get it in front of me, I might take one or two bites and then I don’t want it anymore.
I like tisotumab vedotin better than traditional chemotherapy. It’s not so hard on my body. Do we know if it’s working? I don’t know if they think it’ll work. They’re buying me more time, so if that’s what it can do, I’m okay with that.
In the African-American community, clinical trials are frowned upon…In our mind, we still think we are being experimented on.
Misconceptions
In the African-American community, clinical trials are frowned upon. I think it goes back to when they were using African Americans for experiments and being the guinea pigs. In our mind, we still think we are being experimented on. If you tell anybody you’re doing clinical trials, they think you’re being a guinea pig.
I didn’t have the support. Everybody supports you when you’re going through chemo, but when it comes to clinical trials, they think you’re letting them experiment on you. They don’t care. I have to keep it to myself. I’ll tell people who are battling cancer that I’m in clinical trials, but other people, I don’t.
When it comes to the medical team, sometimes we feel like we’re not being heard. At first, I felt like my doctor wasn’t hearing me when I said it wasn’t fibroids and that something was going on, but they kept brushing me off.
I thought it was just Black women who go through that. Being in the teal and white community and the Cervivor community, I found out that it’s women as a whole. They are not listening to us.
Insurance Coverage
People think that if you want to be a patient at MD Anderson, you can just show up. It doesn’t work like that. When I first found out I had cancer, I wanted to go to MD Anderson because they’re number one. My insurance wasn’t in their network so they couldn’t take me.
While I was going through all of this, I still had insurance because I was still employed. They took excellent care of me during that time, but they could only take me so far. I was getting temporary disability, but my doctor put “permanently disabled” on my paperwork, so I had to resign from my job. They knew I wasn’t coming back, so they said, “You’re going to have to figure out your insurance yourself.”
Even with insurance, I was paying $2,000 to $3,000 for treatment. I lost everything. I lost my cars and my townhouse. The clinical trial was free for me, so that was good. They just had to make sure everything lined up.
I needed people who understood what I was going through, the stigma that comes with it, and that we have a voice. We didn’t do anything wrong.
Finding Support Online
I felt like nobody understood what I was feeling or going through. My mother kept saying, “It’s going to be okay,” but I told her, “What if it’s not? What if I die? What if this is my story?” But, of course, she didn’t want to hear that. “No, you’re going to be okay.”
My sisters were supportive, but nobody knew what I was going through. The only person that I felt I could talk to was deceased. My father would be the only one that would know what I was going through.
I went online and found Cervivor. I needed them more than they probably knew. I needed people who understood what I was going through, the stigma that comes with it, and that we have a voice. We didn’t do anything wrong.
I went to a retreat because I needed to be around these women. I needed them to love on me and I needed to love on them. They gave me hope. They said, “You can do this. You can fight this. Don’t give up. We support you.” They have a group chat where they talk about whatever they’re going through. If somebody doesn’t respond, they all get nervous.
Words of Advice
Cancer taught me to slow down because I was always on the go. I never slowed down to notice anything. Now I would stop and notice things. “Did you know mom has roses in front of her house?” And then I would stop and smell them.
Everything matters to me now because I don’t know how long I have. When I had my stroke, I couldn’t walk and we take that for granted. Even going to the restroom, I needed someone to help me and I appreciate that so much now.
Clinical trials can save us. I’m doing pretty well. It’s working for me. I’m still alive because of the clinical trial. My brother, who has cancer, is on a clinical trial and doing well too.
A doctor told me, “When you go into the doctor’s office, they are working for you. You are not working for them.” When you have that in mind as you’re going in, it’s different.
If you feel like something is not right, speak up. If there’s a treatment that you don’t want to do, say it. We get so nervous when we go in that we freeze up. Use your voice.
Cancer taught me to slow down because I was always on the go… Everything matters to me now.
In addition to Gwendolyn’s narrative, The Patient Story offers a diverse collection of cervical cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Tony’s Relapsed/Refractory Diffuse Large B-cell Lymphoma (DLBCL) Story
Tony was in peak physical condition, working out several times a day when he suddenly began to struggle with fatigue.
After undergoing scans and tests, he was diagnosed with diffuse large B-cell lymphoma (DLBCL), the most common adult form of non-Hodgkin’s lymphoma. He would later learn that his specific subtype is known as T-cell/histiocyte-rich large B-cell lymphoma (THRLBCL).
Before his diagnosis, Tony was an avid cyclist and fitness enthusiast. He noticed a decline in his physical performance despite his extensive training routine, as well as swelling in his leg. After consulting with his chiropractor and internal specialist, a CAT scan revealed that he had cancer.
Although his blood tests did not indicate lymphoma, the cancer had spread extensively throughout his body, leading his doctor to believe that he may have had it for years without knowing.
Tony made a conscious decision to keep a mindset of strength and perseverance that allowed him to face his diagnosis.
He voices how he processed his diagnosis, how he dealt with the side effects of R-CHOP chemotherapy and CAR T-cell therapy, and what he did to stay mentally and physically strong.
Thank you to Genmab & AbbVie for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Name: Tony W.
Diagnosis:
Relapsed T-cell/histiocyte-rich large B-cell lymphoma (THRBCL)
Initial Symptoms:
A lot of effort needed cycling; body wasn’t responding the same
I’m an igniter. I have started several businesses in my career.
I went to North Carolina State University and majored in civil engineering and pre-med. I wanted to be a doctor at some point.
I’m an avid cyclist. I love to work out.
I’m a go-getter. I can’t sit still. I like to initiate things and see things come to fruition.
I’ve always been that person that didn’t need someone else to motivate me. I’ve been highly self-motivated [throughout] my 51 years on this planet. I just love learning new things.
I play the organ, the bass guitar, [and] the saxophone. I love music. I sing [and] write music.
Anything that I put my mind to, I try to do the best that I can do.
My T-cell histiocyte-rich large B-cell lymphoma story
If you ask anyone who knows me, they would say, “No, not him. Can’t be Tony. No, you’re joking.” I lost a lot because COVID hit exactly at the same time. It was rampant when I got sick.
At the time, I had about 200 employees working for me. We lost a lot of contracts and things were just out of my hands. I couldn’t do anything about it because I had to focus 100% on my health.
Cancer doesn’t care [about] your economic background, what race you are. [or] your social status. When it comes for you, it will come for you no matter what you thought you had built up in life.
I thought I was leaving some legacy behind and it came for me. What am I going to do after it comes for me? I never asked myself why. I said, “Okay, why not?” And that was my approach. Why not?
I’m a guy that works hard, does a lot in the community, [and is] active in the church. There’s no discrimination. It can happen to anybody.
Pre-diagnosis
Initial symptoms
I’m an avid cyclist. We ride a lot of miles. At that point, I was doing about 350 miles a week. Being in an endurance sport, you learn [about] your body.
I have this reputation on the team of being pretty fast and pretty fit. I wasn’t giving the guys the business like I normally would be doing. It was just a lot of effort. Something wasn’t right.
They couldn’t really tell any difference because I just won’t stop. I give everything I have, but my body was not responding the same. If I wanted to go an extra five miles an hour, it was a struggle. Coming out the curb or the corner trying to chase somebody down was a struggle.
Then I started noticing that my leg was swelling. I lift weights a lot. I do spin class a lot. I said, “Maybe I hurt my back.” My chiropractor worked on it and she said, “This isn’t getting better. Your leg is swelling.” We thought it was sciatica nerve, but it wasn’t. She said, “Maybe you need to go see your internal specialist.”
I went to the internal specialist. We were thinking maybe I had kidney stones or something bacterial was causing me to experience this. When she checked me out, she said, “You look healthy. There’s nothing wrong. Your blood looks fine. But how about we just do a CAT scan?”
That’s when we had that “Oh my!” moment.
I was 49 going into 50 years old that year. I thought I was going to have this great 50th celebration. I was sitting in a chemo chair on my birthday.
When I first saw my oncologist, the first words that came out of his mouth [were], “If you were not as fit as you are, we would be having a different conversation.” All those miles, all that training, spin class, and gym work, whatever small percentage that was, gave me a jump start and it might have saved my life.
I’ve been an athlete all my life. You develop this push-through-no-matter-what mentality. We push past the threshold. That’s not a good thing all the time.
Think about professional athletes [and] collegiate athletes. Everybody pushes through but they pay for it [in] the end. That’s the mentality that you develop. No matter how you feel, you just push through.
“This hurts.” Push through. “I feel a sore here.” Push through. You develop that mentality that I’m going to beat whatever how I’m feeling and I’m going to still push through. That’s simply what I was doing.
Diagnosis
My blood wasn’t giving them anything. They would run my blood and it would come back good. No signs of lymphoma.
I look at it as if it was the perfect storm. If your body was going to operate in its most perfect form, my lymph nodes did exactly what they were supposed to do.
My cancer was so prevalent that my doctor thought I might have had it for years and didn’t even know it. It had completely taken over my stomach, my lung, everywhere.
I could see the fright in my doctor’s eyes when he saw [the scan], but he could see the tenacity in my eyes. When he told me what it was, [he went] over options.
I had to make a conscious decision. What are you going to do about it? There [wasn’t] any time for tears. I didn’t cry at all. I sat there and made a decision. I looked him in the face and said, “Okay, game on. Let’s go.”
I cried later but [at] that moment, I made a decision. I had to let the cancer in my body know: I’m not giving you victory in my mind this quickly.
I created this alternate reality. I created this warrior mentality. “You coming for me? I’m going to come for you.” No matter what my doctor said, I already told myself that [I’m] going to beat this. I’m going to do whatever I have to do to overcome this.
Breaking the news to family & friends
Initially, I didn’t let anyone know. I’m very methodical and I like to see things through before I bring attention to something. I want to have control of the situation. I wanted to know exactly what was happening because people are going to have a lot of questions.
Going through a chiropractor and my initial doctor locally and even once my oncologist told me, I still didn’t tell them about it. I waited.
I went for a walk. We have a pond in my neighborhood so I sat out there on the pond bench and that’s when I had my moment.
I called my mom. I’m the first child, the oldest grandchild. I remember telling my mom, “I don’t want to die.” She said, “What are you talking about?” I started crying and that’s when I told her.
My wife was there so she knew, but she was frightened. She didn’t know what to say or what to do. Then I told one of my best friends.
It hit me when I was talking to my mom. That’s the person that birthed me. It was devastating.
After that conversation, I zipped those tears up. I said, “It’s not a crying situation. It’s time to go. Time to go to work.”
Drawing boundaries
I said that I will not let family and friends imprint on me. We’re going through enough as is. We know our odds. We know the percentages. We know what we’re facing. Sometimes, [because of] their mere concern for you and all the emotions they bring to the situation, loved ones will compound your situation.
You have to put them at arm’s length. You can’t take on what they’re saying because sometimes, out of love, they will give you bad information or will remind you, “Only 1% of people live from this?” They don’t mean any harm but their words will hurt you.
This is what I did. Love your loved ones, but guard yourself. At the end of the day, it’s a one-on-one thing. You’re battling that cancer. You’re battling everything that comes with it. They’re not doing that with you. They will stand with you, but they’re not here. That’s where your battle is.
The crying was symbolic of accepting what was happening. It’s real. We can create all the alter egos we want, but accept that it’s real. The crying just released that in me.
I felt free. A freeness came over me. It was a calm and peace that came over me. I felt like it was necessary.
A lot of times, men are providers. We like to take care of things. We have our egos. We want to feel important. We validate ourselves by what we can do for you, what we can give you, or how we can protect you.
We’re not conditioned to be as emotional. Women are more emotional incubators and that’s a good thing because you need to have that balance. We need to have that also as men and sometimes we don’t. If you hold that in, [it’s] just adding more stress to your situation.
Crying and releasing helped me further along in my process versus me doing it at a time that wouldn’t be optimal. I was doing soul-searching, too. I thought, “Tony, you have done this. You came through this. You have broken through this ceiling. You have done all of these things. You can do that, too.” That’s how I approached it and it helped me.
Treatment
I had R-CHOP, which was pretty nasty.
I left my local doctor and went to [the] UNC hospital system. That’s where I met Dr. Boles, my oncologist. We talked about my treatment plan. He gave me all the options and encouraged me to get a second opinion.
But I already knew. When you know, you know.
When I look that man in the eyes, I see a caring, compassionate person [who’s] concerned for me. And that’s important because sometimes, a lot of us will get someone [who] doesn’t have [a] good bedside manner, just matter of fact, or [will] bring gloom to your situation and you already know it’s gloomy.
He talked to me almost like the big brother going to the little brother who’s a doctor. You’re putting your trust in the little brother now because he has [the] skill set you don’t have. That’s [the] kind of relationship he and I have. I was the big brother who was relying on him as my little brother to take care of me.
One thing he told me [was], “Tony, by nature, you’re not a selfish person. You employed people, started a cycling club, and you did all these things. You give a lot to people. But I need you to be selfish. This is the one time you will have to be the most selfish in your life.
“You have to block out all the background noise, all the chatter. Stay off of Google. Inundate yourself enough that you understand what’s going on with you, but don’t deep dive to the point that it causes hysteria.”
Keeping physically active during treatment
[During] certain rounds of my chemo, I was walking five miles a day every day and doing my spin trainer 30 minutes a day.
Finally, Dr. Boles said, “Tony, you got to pick one. You can’t keep doing both.” I already made a determination that I wasn’t going to let those chemicals run roughshod in my body and not do something about it.
I’m out there walking when I was feeling sick, made my other body systems kick in, and it made me feel better than just sitting there. Doing pushups gave me something to look forward to. It made me feel defiant. The more I became defiant, the more I start seeing victories.
Instead of losing weight, I was gaining weight. I was gaining muscle when I shouldn’t have been gaining muscle.
When I look sick, it affected everybody around me. They didn’t know how to handle me. They were very cautious because it was just so unnerving. Not only did I have cancer, which was evoking something in them, I now physically looked the part.
When I first got diagnosed, I got down to 167 pounds. I went to my doctor after chemo and one of my PAs said, “Tony, you’re losing too much weight.”
I basically starved cancer. I stopped eating bread [and] sugar. I only ate green greens like spinach and kale. I said, “I’m not giving you anything that you can live off of.” I was losing 6-7 pounds a week. She said, “You can’t do that. You’re losing way too much weight.”
The next time she saw me two weeks later, I was at 190 pounds. When she saw me the next week, I was at 205. I never stopped. I started doing pushups. I start physically challenging myself.
You don’t have to be that extreme, but I didn’t have anything else to do. I do believe that if you’re not physically fit or capable of that, do something. Don’t sit there. Show cancer that you will be defiant.
Dr. Boles told me, “Tony, one of my biggest challenges with my patients is me looking at them and saying, ‘Maybe just walk.’ But I’m looking at a person that never walked in their life so I have to be realistic and say if they weren’t walking before, it’s going to be hard for them to walk afterward. If everybody would just physically move their body, you’re going to move those processes along in your body.”
Chemo is designed to fight cancer, but it wreaks havoc on your organs. That’s a problem for a lot of people. I said to myself, “I need a healthy lung, I need a healthy spleen, I need a healthy heart,” and the only way I knew to keep those things active was to move. That’s what I chose to do.
I’m not trying to be anybody’s superhero. You have a baseline and then you have an extreme. All of us still want the same thing, to be cured and healed. I did, too. I chose the extreme. At the end of the day, we all want to get to the same place. Choose what motivates you to get to that place.
Side effects of R-CHOP chemotherapy
R-CHOP was funny. I’m just an enigma. Because I was doing those things, I’m just breaking all the rules.
I was going every 21 days. After my first R-CHOP session, Dr. Boles and the team would say “How are you feeling? You feel any chills?” No. “Sweats?” No. “Your hair? Well, obviously, your hair is not falling out.” Mm-mm. “You feel nauseous?” Nope.
I had no symptoms that first week. I really believe they didn’t believe me because he dragged me back in there right after the next R-CHOP session to test me. I didn’t feel anything. I was saying, “Oh, this is going to be easy.”
[The] second week, [I] got really sick. I was going into this pattern. [The] first week, I was good. [The] second week, didn’t feel so good. [The] third week, the light came on and I felt like I was back. That was my process all the way throughout like clockwork.
My body is responding pretty well. I had the Red Devil. I’m doing fine.
The right-hand side [of] my initial scan [was] what it looked like when I first walked into the door. A couple of weeks later, on the left side, was my scan after and that was a premature scan because he wanted to see what was going on. You could see how much of that cancer was eradicated just like that.
On my second round of R-CHOP, I see a bunch of needles. I said, “Whoa! Where are the bags?” They started giving me injections in the stomach.
Dr. Boles said, “You responded so well we’re going to go with some direct shots,” and they [were] putting half of my chemo directly in my stomach because I could handle it. That’s how strong my body was.
I have a port. I recommend getting a port because it saves your veins in the long run.
Hair loss from chemotherapy
Hair loss kicked in on my third session. I went to the bathroom, cut my hair, and it just start coming out in globs. It went just like that.
Your hair’s like your badge of honor. You take honor in that until you have that recessive gene and you lose it and can do nothing about it. But that hadn’t hit me so I still had mine.
You’re not going to get through this with no [side effects] at all and hair was one of them. To lose that, I felt like this is real. Cancer is still fighting. The chemo is doing what it’s supposed to do. It just was a reality check for me.
I would cover my head a lot. I didn’t like the bald look so I don’t have a lot of pictures from that. I don’t want to be reminded of that. I started wearing beanies and look more stylish, but there was no hair.
Savoring the small wins
When I started getting little stubble back, I felt good again. It’s funny how that works. You defeat it when you lose your hair, but when it starts growing back, you are so excited. Even if I didn’t have a lot of it, I was happy that it was coming back. It was like a victory.
It’s these small victories you have that you start thinking, I’m getting better. Cherish those moments because any moment that you can have and savor is a win for you.
Post-chemotherapy PET/CT scan
At the end of R-CHOP, Dr. Boles gave me a couple of months off. When I started feeling well, I jumped right back on the bike again. I was feeling good about myself. I thought, “Maybe we won.”
When I had that PET scan, he brought me back in and said, “Well…” I knew. He said, “We’ve got a couple of concerning areas.” I said, “Maybe they’re dead cells, just not giving up.” He said, “No, I don’t think so.”
At that point, I said, “Okay. I got to re-engage.” Dealing with cancer is a battle of engaging and re-engaging. For that brief month or two, I disengaged. But when he told me I had some trouble spots, I had to re-engage all over.
Relapse
Mentally, that was challenging. You have to have a counselor or someone to talk to. I started journaling and I would talk to myself a lot. I would talk to my body and my cells.
He said, “I’m going to send you to the big house, UNC Chapel Hill,” that’s where the teaching hospital is. “I’m going to send you to specialists there.”
He said, “I’ve taken you as far as I can take you, Tony.” [Do] you know how humbling that was to hear a man of his stature saying that? He’s pretty credible. He said, “I’ve got to send you somewhere else, someone that’s better than me.”
So impressed with UNC, so impressed with them. Again, he gave me options. I said, “You know what? The UNC family has been really good to me.”
When I met Dr. Grover, she was just like him. She was amazing. Later on, she said he told her, “When you meet Tony, he’s not going to look like you think he looks. He’s not going to respond like you think he’s going to respond. Just be ready because he’s going to be the opposite of anything that you’ve ever seen.”
CAR T-cell therapy
Early on, I had mentioned to Dr. Boles, “What about CAR T?” I had done a lot of research. He said, “That’s not available at the time,” cause it wasn’t available to my specific type so it wasn’t an option.
In December 2021, CAR T came online for my specific type. When I got to Dr. Grover, she said, “Tony, I have great news. You qualify for it,” so that’s what pushed us into CAR T.
I knew my body needs a break from chemo. That was not going to be an option.
I was very interested in CAR T from a scientific standpoint — taking your cells and modifying them to specifically attack cancer. That’s pretty ingenious.
Cancer is a very smart cell itself. It can change and evolve. Initially, your T cells will jump on it and eradicate it, but cancer will evolve and say, “We’re going to trick you. We’re going to change our makeup so you don’t recognize us,” so the T cells just come cruising right on by it and cancer can still proliferate. I thought it was interesting how they would reprogram ourselves to recognize the tip [of] the cancer.
I said, “This is if insurance would pay for it.” That’s the main thing. They said yes and that’s how we did CAR T. No other options. I wanted to do that one.
Doing research to help with treatment decisions
You have to do an honest assessment of how you’re feeling coming out of this. Chemo can be rough. If you feel like your body can’t handle that, seek second opinions. If your body’s telling you it can’t handle any more of this, it can’t. You may need a break if you can afford to have a break. But if there [are] other opportunities, make sure you understand what they are.
If you don’t feel right and you don’t feel good, you can’t continue down that path. You have to have time where your body can gather itself. That’s what I encourage more so than anything.
Understand your body and understand how much more of this you can take. Pay attention to what your levels are and how your organs are responding and that will tell you what your course of action should be. You have to make sure everything is at a place [where] it could handle another round or another series of chemo.
You have to ask yourself: how am I feeling physically? If your doctors say you’re at a point [where] we’re not as concerned with it spreading rapidly, pause a little bit just to get your mind and body back together so you can engage again. That’s what I would encourage, more so than what treatment you’re seeking.
Don’t be so quick to rush into one treatment, into the next, into the next because that degradation would take place in your body at some point.
Just the word practicing medicine is exactly what it is. It’s practice, unfortunately. They do the best they can through what they’re dealing with, their education, and what they’ve been exposed to, but it’s still practicing medicine.
Holistic care in conjunction with cancer treatment
I found a holistic doctor so I was doing holistic medicine in conjunction with chemo. I was researching holistic doctors in other countries that may not have the scientific approach as developed countries. Some of them rely on Mother Nature who provides us with everything that we need, too. I started looking at plants and herbs that can help me detox.
As quickly as you can detox chemo and chemicals out [of] your body, the more readily your body will be if you have to do it again. I was looking at different options to detox myself outside of traditional medicine.
You don’t want to just keep adding chemicals to your body. They give us chemo then they give us these other pills to help with this and that. But sometimes, Mother Nature gives you that and your body is readily absorbing that versus the tablet.
I would tell them what I’m taking because some of that may affect chemo. Chemo is strong and designed to do what it does. Sometimes you can alter how it works by taking some of these things.
Don’t be a renegade. Do these things in conjunction. Make sure you let them know what you’re taking and then they can tell you. Some things he would say, “I don’t recommend that,” then he will tell me why and it would make sense. Seek other opinions but also validate that versus what you’re already doing. You got to have that balance.
When I would throw all these things at him and he didn’t dismiss me, that’s when I knew he was the doctor for me. Your physician and your team matter. You have to feel good about them. If you don’t feel good about them, find someone that you do. They affect everything about your situation.
If you don’t feel loved or feel like they care, then with the treatment that they’re giving you, you’re not going to have confidence in that. Make sure you feel good about them.
Preparing for CAR T-cell therapy
CAR T was my most difficult time simply because I was just so uncertain. I was saying to myself, “Okay, I went through R-CHOP. What if CAR T doesn’t work? What’s better than that?” For a moment, my mind would go dancing.
The chemo depletion was very hard for me. They take you to the edge. I had three days worth of chemo depletion.
When you’re sitting there, you can be full of life and your eyes could be all bright and bubbly. But when that chemo starts coursing through your veins, it’s almost like a dimness comes over your body and you can feel an extraction of life just coming out of you. It’s like getting close to death.
Chemo depletion is exactly how it sounds. They depleted my body to the point that there was nothing [so] that it would accept those CAR T cells.
The first day hit me so hard. I went through six rounds of R-CHOP and I didn’t feel like that because they would always give me something to try to bring me back. They would give me the white blood cell shot and help me boost myself back. But this time, [there] was none of that. I could feel like my essence leaving me after that first day.
You had to be within 15 minutes of the hospital. I live an hour and something away so I had to move up there. I stayed in a SECU House, which is like a Ronald McDonald House for grown-ups.
They took me through the back entrances of the hospital to get to the CAR T center because you had to be away from people. You had no immune system at that point.
I always would pass the chapel going up. [On] the second day, I went in and broke down crying. I said, “Lord, I can’t do this.” It drained me so bad I felt like I couldn’t do anymore.
I sat in that chapel [for] about 5-10 minutes. Then I got up, dried my tears, sat in that chair, and had my second day. I did the same thing [on] the third day.
I stayed at the SECU House and started my rehab and recovery. The people there were great. They cook for you, you meet other cancer patients in [the] same situation, and you realize that there [are] a lot of people in worse situations than you.
Nurses call me Zeus at the hospital. At the SECU House, I saw people fighting for their life and I’m walking around like I’m going to a training camp somewhere.
Typically, you have to be there [for] 30 days depending on how you respond and you have to go to the hospital every day for labs. [In] my first seven days, I had no symptoms. I was feeling great.
I was sitting there talking to my CAR T cells and said, “You guys are my special forces.” Every night, every day, I would check in with them and say, “Hey, what [are] you guys doing?” They’ll say, “Executing. Executing, boss.”
I would talk to myself like that literally. I thought, “Execute. Go into the highway and the byways in my body and find cancer and kill it.” I was just talking to my body.
After the seventh day, my head nurse said, “You’re doing so well. We’re going to let you go home.” This was a Wednesday. That Friday, I got super sick, wound back [in] the hospital, and stayed for 10 days. My doctor was joking, she said, “You [were] my little superstar and you wound up back in here.”
I didn’t have any other side effects. I was lethargic for a while. The fever was the only thing that showed up. After they determined how to get that down and I actually broke it, they let me go back home and I’ve been home ever since.
Post-treatment scan
I finished the CAR T in December 2022 and had another PET scan [in] January 2023.
We found some cells, but I told Dr. Grover the same thing. I said, “Maybe they’re dead.” She was the same way, “I don’t think so.”
I was very discouraged because I put a lot of faith in the process. But all hope wasn’t lost because we were unsure.
The spot that I still had resonating was in the original area. It was very difficult to get to so she wanted to do a biopsy. They went through my hip to get to it. They took 16 to 18 samples and they were decent samples that we could tell what’s what.
Miracle moment
If you believe in miracles, I would say this is a miracle moment. When I met with Dr. Grover [about] the results, she said, “Tony, it looked like someone had pinched it.”
If you can imagine pinching your cell, smashing it, and just excreting everything in it, like you squeezing something really, really tight, that’s how that cell looked. She said, “The report said no lymphoma found.” I thought, “That’s a miracle, right? That’s a miracle.”
But doctors don’t deal in those terms so they’re not going to say certain things. They’re not going to give you certainty or anything because they don’t know. But we both were smiling. No lymphoma found. It was inconclusive.
I have another PET scan to prove whether or not those cells were active, dead, or whatever they were. We will know more.
I had another moment of victory. Typically, when they give you that report, it’s a whole page. When the radiologist gave the report, it was only five lines. That’s all he said. It looked like this and no lymphoma found so that was a win for me.
At that moment, I didn’t want to talk about the what-ifs because now, my faith is renewed again. I’m engaged.
I’m telling myself, “When we have this next PET scan, it’s going to reinforce what we already thought. Those cells are going to be dead.” That’s what I’m saying to myself.
Now, what if it’s still there, right? But it’s the same what-if that we had before. We never did targeted radiation, stem cell transplant is still on the table… A whole lot of stuff is on the table because of how my body responded. My organs are super healthy so they feel confident that I could withstand something if we had to.
I ask my body to respond every time I get knocked down. I think that’s just my faith. That’s the promise that I believe, that I hold on to.
A lot of times, it [doesn’t] have to make sense to a lot of people. It just has to make sense to you because that’s what’s keeping you going. If you’re putting your faith in that, that’s what’s keeping you going. I don’t care what nobody else thinks. Eliminate the background noise.
Words of advice
You have to cry. Go somewhere alone. I was alone, out in nature, crying, [and] talking to my mom. You can’t do that amongst other people. There are moments for that.
You need to have that alone time so you can get yourself prepared for what’s to come. It’s going to help you because it makes them stronger.
Listen to what your body is telling you
Get checked. Do your yearly checkups. Go beyond that. Get your blood analysis done. Take more control of your health.
Sometimes if you feel pain, it’s for a reason. Just go get checked out. I was one of those ones that, “I don’t need to go do that. I know what to do. I’m just going to put some ice on it. I’m going to get a massage. I’m going to do this.”
Go get checked because sometimes, there are things going on in your body that you can’t see that need to get checked. For all the athletes, for mom and dad sitting on the couch, your kids, get checked out and go a little further.
Sometimes the basic check is not enough. Add extra to that. Get your prostate checked if you’re a man. Get [a] mammogram if you’re a woman. Get the blood test done so you can see what’s going on in your body. Those things matter. I would definitely do that over because I didn’t do a great job of that at all.
Make the most of your hospital stay
I made a lot of friends in the hospital. Try to make the most out of it. The nurses and I would have fun. I used to tease them all the time.
You would think, I’m here for my care. They’re giving me chemo. They’re taking care of me. Then they ask you if you’re hungry and they give you some cookies. Like, “What? Cookies? Where [are] the oranges and apples?” They give you all this stuff that you shouldn’t be eating.
I had a good time. I bonded with my team doing R-CHOP. I am thankful for every nurse because they are doing God’s work. It goes unappreciated [and] devalued sometimes, but they work long hours and they legitimately care for you.
That is your frontline. You’re not going to see your oncologist in there with you. You’re going to see the nurse and you’re going to see them all the way through the end. Don’t be nasty and bad to your nurses. Love them. Encourage them.
I would do little things for them just to give them a ray of cheer because they’re taking care of me and they’re breathing life into my situation. They’re making sure I’m taken care of and I appreciate that. You got to appreciate that.
Cancer is bigger than you
This is bigger than you. Why are you in it? It’s not all about you. It’s bigger than us. When you help other people and pour into other people, it will come back to you. The more you give, the more you will receive.
You have to be selfish to protect yourself while you’re going through this, but you also have to accept that maybe [you] can help somebody. Maybe I can do something. Maybe I can [make] a difference in somebody else’s life while they’re going through this. Maybe I can volunteer at the cancer ward.
Keep yourself engaged not so much on your situation but think about someone who’s doing worse than you.
My biggest impact was when I stayed at the SECU House and I saw so many people that were worse than me; that encouraged me. People that could barely move were cooking breakfast for us, making lunch and dinner for us. They were giving back. In spite of their situation and no matter how they felt, they were willing to give back.
I said, “My life will not be the same. I’m going to give back. I can’t wait till I get some clearance runway.” We’re at the hospital a lot dealing with this. I can’t wait till my doctor says, “You don’t have to come as often. We’ll do it every quarter.” That gives me more time to get activated and start doing stuff because people need that.
Have faith
Sometimes, you just take [the] faith that you have. Faith is something that you really can’t see, so you’ve got to put it in something. Either you’re going to believe in a doctor or you’re going to rely on your faith in God. I chose to rely on that and held on to that
As a result, every time I get low [and] feel like I can’t make it, I just recall that. I’m hoping and believing in the outcome that I want to see happen.
I encourage everybody [to] grab faith and believe because that’s where the battle starts. It starts right [in the mind]. Physically, you can do all you can, but if you lose the battle [in the mind from] the very beginning, you’re fighting an uphill battle. Now you’re battling your belief that you can even be healed from this or that you can be cured from this.
When you can look beyond your situation and into somebody else’s life and try to help them, it will help your situation. It’s that faith — believing in something strong enough that you know the outcome of this end will be for you.
My wing is being fixed so I can fix somebody else’s wing and say, “You know what? At one point in time, I had a broken wing, too.”
We have our tribe. When we move and make an assault on this, together is so much better than going lone wolf. You got an army behind you so it’s not over.
Stay steadfast, everybody. It may seem difficult. It may seem bleak at times, but stay steadfast. Don’t let outside sources influence you. Stay steadfast even in your darkest moments.
Listen to The Patient Story. That’s what I did. One of my favorite stories was Nina. Those are the things that get you by.
We all have our faith, but sometimes you got to put your hands on something. You have to put your eyes on something so guard what you see [and] protect what you hear.
Special thanks again to Genmab & AbbVie for their support of our independent patient education content. The Patient Story retains full editorial control.
Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
The Latest in Breast Cancer with Dr. Lola Fayanju at San Antonio Breast Cancer Symposium (SABCS) 2022
Interviewed by:
Stephanie Chuang
The San Antonio Breast Cancer Symposium (SABCS) provides the latest information in research, prevention, diagnosis, and treatment of breast cancer.
Dr. Oluwadamilola “Lola” Fayanju is the Helen O. Dickens Presidential Associate Professor in the Perelman School of Medicine at the University of Pennsylvania, the Chief of Breast Surgery for the University of Pennsylvania Health System, the Surgical Director of the Rena Rowan Breast Center in the Abramson Cancer Center, and an innovation faculty member at the Penn Center for Cancer Care Innovation (PC3I).
Dr. Fayanju’s focus as an academic breast surgical oncologist is on health disparities, patient-reported outcomes (PROs), and aggressive breast cancer variants.
Dr. Fayanju sat down with The Patient Story to discuss some of the latest news coming out of SABCS 2022.
discusses breast cancer, PROs, the language used around racial health disparities, and the importance of conferences like SABCS.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Introduction to Dr. Fayanju
Dr. Fayanju: I’ve always been interested in women’s health. [I was] one of those kids who always wanted to be a doctor and actually was really leaning towards OB-GYN. [I] was always interested in women’s reproductive rights.
Then when you go to medical school, you find out which parts of the body kind of attract you more. I have to admit, I was actually really attracted to surgical disease, found myself really gravitating towards surgical disease, and really got interested in general surgery.
As often happens, you are drawn into things because of the patients who move you and the mentors who inspire you. I was really moved by a patient who was a lot like me when I was a third-year medical student. She was about my age. She was actually also Nigerian.
She was presenting with a large triple-negative breast cancer, and she was alone. She had no family in the United States. I actually remember her starting to cry as I was examining her. I was seeing her in a safety net clinic. That is a clinic that was staffed primarily by trainees overseen by altruistic attendings at my medical school, who then connected those patients to tertiary care.
[I had] a wonderful couple of mentors, including Julie Margenthaler, who is the Chief of Breast Surgery at Washington University, and Ira Kodner, who was a colorectal surgeon but became very famous in the world of medical ethics, as well as care for the underserved.
Working with them, [I came] to realize that patients who presented through the safety net clinics were more likely to present with delayed care and more likely to present with a more advanced stage. That really launched, I would say, my career as a health services researcher and as someone interested in care that really reflected disparities in our society and our ability to provide equitable care.
I became interested in surgery because of the disease, I became interested in breast cancer because of the patients, [and] I also became inspired by having great mentors.
It all seems very linear, finding myself here now as a breast surgeon, but it was actually multifactorial and looks more clean and neat than it felt in the moment. But here I am today with the privilege of being a breast surgeon.
How did you feel meeting that patient who had delayed care?
I felt anger. I felt frustration. I felt the beginnings of despair, but then held myself back, thinking, “How could I make a difference?” Her experience and my experience working with the safety net clinic there actually led to a research project.
What was exciting about that [research project] is that it actually led to a change in the way that care was provided in St. Louis. It used to be the case that patients who were seen in one of the clinics that were treating patients who had no healthcare or who are underinsured — those patients often had to go back to their primary care providers to get referred to the tertiary clinic to get cancer care.
In fact, through research that we conducted, we were able to demonstrate that this led to delays because of having to redo imaging [and] because of missed appointments. It led to a change through the St. Louis Health Commission in the way that care is provided for these patients.
For me, it was a way to show that research didn’t have to be something that was localized to the ivory tower. It could actually be impactful. It could actually translate into policy and into real-world effectiveness. That was really exciting for me.
The importance of SABCS and other conferences
The importance of conferences like San Antonio, ASCO, ACR, or Society of Surgical Oncology is that we who are engaged in the scientific process take what we learn and implement it in our everyday care.
The tragedy of it is that often it takes too long. We know that the average amount of time it takes for our innovation to be implemented in routine clinical care is about 9 years.
One of the things that are really exciting [is] the field of implementation science, which at my institution, Penn Medicine’s Abramson Cancer Center, we actually have a funded implementation science center, which I’m a part [of].
That works to bridge the disconnect between discovery and delivery to ensure that what is found, what is discovered, and what is innovated by scientists actually makes it to patients.
What I would say is important about San Antonio is one, announcing new medications, devices, or approaches to care that will make a difference in the lives of patients with breast cancer. Two, updates on trials that were announced in the past that we now know more about. Then, three, ways in which we can take knowledge that has been kind of assumed to be standard and how we can actually apply that and update that in regular practice.
[Here are] examples of each of those 3 things. One, we are increasingly weighing the results of trials that will tell us how best to manage HER2-low disease. That is patients who have some HER2 expression, but where they don’t rise [to] the level of expression that we used to think was needed to benefit from targeted therapy.
An example of the middle one is the reporting of our understanding of Oncotype DX as both a prognostic and predictive tool for helping us better treat patients with estrogen-receptor-positive disease.
Then a third example is a talk that I’m giving today as part of a panel on patient-reported outcomes. [PROs] are opportunities for patients to describe how they’re feeling, what symptoms they’re experiencing, [and] what psychosocial challenges they might have that might prevent them from optimizing their breast cancer journey.
Those are 3 ways in which conferences like this allow us to communicate new findings, update knowledge we already have, and translate information and approaches we have into the clinical realm for the benefit of patients. Those are some examples of why San Antonio is important.
HER2-low breast cancer
The way to think about it is we’re looking for more opportunities for treatments. I think of HER2 targeted therapy as really an ideal within oncology because it really has changed our ability to achieve pathologic complete response — that is, eradication of tumor prior to surgery just through the use of systemic therapy.
It really has represented a gold standard that we’re trying to achieve for other types of molecular subtypes. Really, [what] we’re trying to figure out more and more is which types of HER2-low can be treated with systemic therapy. In whom can we deescalate other types of treatment? We know that some of the targeted therapy is very hard on the body, and so that’s something that we’re hoping to learn more about.
What are the new emerging treatments for breast cancer?
One of the big trials that came out several years ago was TAILORx, which allowed us to understand how well Oncotype DX, which is a genomic test that allows us to understand whether or not women with estrogen-receptor-positive breast cancer would benefit from chemotherapy in addition to endocrine therapy in the adjuvant — that is, post-operative setting.
Yesterday, an update on that was provided. It was very important in that it showed that women who had low or intermediate-risk Oncotype scores did not benefit substantially from additional chemotherapy beyond just getting endocrine therapy, except for women who were 50 years or younger. If they had an intermediate risk score, those individuals had some potential benefit from getting chemotherapy.
Worse outcomes reported for people of color
What was an unfortunate finding within the study was that Black women had worse outcomes even when you controlled for other factors. The way that was communicated was, I think, in a way that unfortunately is often communicated when trials are described.
Black race was communicated as an adverse factor, which is really not the way in which we want to describe these types of outcomes in minoritized groups. We know that race is a social construct.
As Dr. Lori Peirce, a very prominent radiation oncologist at the University of Michigan and former president of ASCO, described immediately before that presentation, race is a social construct that nonetheless has power and it is notable that in African Americans for many years, there was the one-drop rule in effect.
It was used to justify the enslavement of children of miscegenation in order to keep those children enslaved. It is also used to withhold rights from people of Native American ancestry by having it be that you have to have a certain minimal amount in order to claim Native American ancestry and take advantage of certain rights that are ascribed to them through the U.S. government.
Again, the use of ancestry is often political; it is not biological. When we ascribe risk or we describe disparities that are observed in certain groups, we need to really tease apart when we’re talking about genetic ancestry and when we’re talking about the systemic racism, bias, and the structures that contribute to seeing untoward outcomes in those groups. That, unfortunately, was not really described in the relaying of those results.
Language around racial disparities in healthcare
\We should never use language that Black race is an adverse factor or Hispanic ethnicity is an adverse factor. People’s identity is not an adverse factor, even if we find disparate results in that group.
The way I would describe those results is to say that, unfortunately, we continue to find worse outcomes amongst Black women. This is an important subject of future inquiry that hopefully will be better understood if we deliberately target Black women for enrollment in these trials, as they continue to be under-included and underrepresented in clinical trials.
Why is there a lack of diversity in clinical trials?
Many of the women who choose not to participate in clinical trials, who are African American, it’s not because they can’t afford to do so. It’s that they have a justified mistrust in the system, a system that has not earned the trustworthiness of people of color.
I think that descriptions of trial results matter. Words matter. As clinical trialists [and] as scientists, we need to think about how the words we put out there will influence [the] future behavior of the people we’re trying to attract to science.
Patient-reported outcomes
Dr. Fayanju: Patient-reported outcomes allow patients to communicate their feelings, sensations, [and] experience without the filter of the physician’s perspective. We know through some landmark work that it may actually improve survival, being able to communicate those experiences directly to their clinicians in a timely fashion.
We also know it is associated with improved shared decision-making, and improved quality of life. In vulnerable populations, it may even allow us to anticipate potential delays in receipt of care and receipt of treatment.
The difficulty is that there’s already a lot of pressure on the patient encounter with regard to what patients are trying to communicate and what doctors are trying to achieve. It’s not that doctors or clinicians as a whole aren’t trying to hear what their patients are trying to say. It’s often you have 15 to 30 minutes to accomplish all of those things.
What I’m hoping to communicate is how best to do that. What are some strategies for collecting that data prior to the patient encounter, during the patient encounter, and potentially afterward? Does it have to be limited to the cancer setting? Are there ways in which we can potentially engage primary care?
Additionally, what are the modalities in which we need to engage patients? How can we it feel less like work? One of the things that we need to think about is how to engage behavioral economics to make it feel easy, both for clinicians and patients. We need to make this not feel like homework, both for patients and for providers.
How can the patient-doctor experience be improved?
We need to be multifaceted. We need to recognize that our patients don’t all engage with patient portals. Many of them have smartphones, but levels of comfort vary. We also don’t want to exacerbate existing disparities by giving some patients a lot of opportunity to communicate with us and other patients the minimal opportunity to communicate with us.
Being able to use both smartphones and simple phones, being able to take advantage of opportunities to communicate in the waiting room, being able to sometimes rely on paper and pencil, and also making sure that we have culturally humble as well as linguistically diverse opportunities for collecting that data are really important.
Looking forward to future research on breast cancer
I’m really excited about the idea [of] precision oncology, which right now focuses on the kind of molecular milieu.
I think it also needs to think about the social milieu of the patients. How can precision oncology take into account the specifics of a patient’s social context and tailor their care to their lives, not just the cells in their body and the DNA of their tumor?
With the increased attention, the social determinants of health that COVID-19 really caused all of us to really focus on, I hope that there’s more research. I hope it’s sustained interest in making all of us believe that data that’s important to collect, act upon, and incorporate into our sense of what health should look like and how we can promote cures by incorporating the whole human into our care of the patient.
When Marsha Calloway-Campbell learned her husband was diagnosed with multiple myeloma, it turned her world upside down. But since his diagnosis, she’s rarely left his side, which at times takes a toll on her health. A myeloma caregiver, she’s learned how to find community support and advocate for her husband.
As the Program Director of HealthTree’s African American Multiple Myeloma initiative, Marsha has a passion for empowering others. She works to address the many obstacles African Americans face in myeloma diagnosis and treatment.
She voices how she took on the role of caregiver by taking on many burdens, how she made sure her husband was getting the best care and treatment, and how she got through the heavy emotions weighing on her.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m a mother of three daughters and a grandmother of a grandson.
Professional, career-oriented, type A overachiever, a Christian, a believer, [and] a family woman.
Pre-diagnosis
[Our] household was crazy busy. [Out of the] three daughters, one dances competitively. We drove all over the US with her. Six years later, her sister came and 20 months later, another sister came.
The two younger ones were athletes. They played basketball, soccer, volleyball… We let them try everything. Then we got into travel ball. There were times that he would put one in the car to go to Atlanta. I would put another in the car to drive to Chicago.
We were gym rats. He was an athlete. I played ball in high school. It continued even into college for the two younger ones. They were student-athletes. That’s the synopsis of us before. Let’s call it 2016. And that’s when he started not to feel well and things started changing.
Initial myeloma symptoms
Armaray is a Black man. I say that because many Black men don’t go to the doctor, but he did. He got yearly physicals.
In 2016, he had gotten a physical, probably July-ish. August [and] September came. He started not to feel well. He started seeing other doctors. He was 57 at the time. They said he had a slightly enlarged prostate. They said, “Go to a urologist.”
Nothing was making him feel better. We get to Thanksgiving. He stayed in bed the whole weekend. We just knew something was going on. We went to his general doctor.
Right around Christmas is when I started getting real concern and pushing his primary care. He told me, and I remember it like it was yesterday, “It looks like Armaray has some compression fractions in his spine.” We’re like, “Why? Where is that coming from?” He had been an athlete and had had some surgery in 2015, but for an L4 and L5. Everything was fine.
He started wondering, Is it related to that? Still, no one knew. They said, “Okay, let’s get scans. Let’s do physical therapy.” Put him in physical therapy. “Let’s get that TENS unit for the pain.” We did all of that. Armaray trying to stretch his back out, thinking that will help.
New Year came and [on] January 12th, he almost collapsed as we were about to go to physical therapy. Instead of driving him to physical therapy, I drove him to the ER. Pulled up at the door, went in, and said, “I need a wheelchair,” and that was that’s the beginning of that story.
Within an hour and a half or so, I heard that ER doctor say, “Put him in room 10.” I go up and say, “Oh, good. You’re admitting him.” He just looked at me [and] said, “Oh, yeah.” I saw the concerned look. He said to me, “How long has he had kidney disease?” I said, “He doesn’t.” And he said, “Well, he does. His kidneys aren’t working.”
Armaray, even at 57, was still the athlete. He worked out four, five, or six times a week. [At] 6’2” and 195 pounds, [he] ate better than anybody in the household. He took care of himself, was not on any kind of medication, no blood pressure medication, nothing.
The nephrologist was called in and they ended up saying to me, “His creatinine is 14.” That didn’t mean anything to me. But she looked at me and said, “It should be under 1. I don’t know how he’s standing.” That’s when the ER doctor looked at me and said, “It might be multiple myeloma.”
I was like, “Okay, but what is that?” I remember saying inquisitively, “Is that cancer?” And he said, “Yeah, I’m not sure yet.” Then he tried to walk it back a little bit, but the nephrologist was standing there and she said to me, “One of my nurses has it.” She needed to let me know that it was not necessarily a death sentence.
She said, “We’ll figure all this out later. I have to get him into dialysis.” They worked their magic. They got that catheter put in and he was [put] in dialysis that night. We stayed in that hospital for one solid month because things were happening fast.
I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.
Realizing he had to be admitted to the hospital
[With] all of those things they were doing, I knew I had to call people. At that time, the oldest daughter was a senior in college, living in the city. The two were in school, one was a senior [and] one was a sophomore in the middle of basketball season.
I knew I had to tell my mom, who was in her 80s at the time. Keep in mind, she’s known him since he was 17. He’s like a son.
He was admitted bright and early the next morning. Here comes the nephrologist and her nurse practitioner. He looks even better from just that one dialysis session. Every single morning that we were in that hospital, the two of them showed up to say, “Here’s what’s going on.”
Imagine being in the hospital [for] a month. There were many doctors [and] many specialists. They would come in and give me, “Okay, he’s probably going to have a blank test today,” or “This is probably what’s going to happen.” It kept me [in the know].
My sorority sister gave me a binder that first week. She said, “Listen, it’s going to be a journey. Take this binder. Write everything down. When doctors come in, write down their names and who they are.” I did exactly what she told me. But things started to happen.
They would talk to me. “He needs this surgery.” His lesions were up and down his spine. He needed to have what’s called a kyphoplasty to shore up the spine to make it more stable. He was too sick to give consent so, of course, I had to do that.
We had the pulmonary doctor looking at him. We had a cardiologist looking at him. They finally confirmed the diagnosis and they started to treat him.
We thought he was getting better. [Then] his lungs started to bleed. It was a reaction to the treatment. Now I have pulmonary, cardiology, and hematology kind of pointing the finger at each other like, “What’s going on?” The hematologist was like, “It wasn’t what I did.” It was just all of that.
I sat in that hospital and with all of that going on, I could not leave. I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.
We knew nothing about multiple myeloma. It still didn’t make sense to me. All I knew was he was not getting better. Things are happening. I need somebody to please, please figure this out.
‘If it is that, here’s the deal. It is incurable, but it is treatable.’ I remember those words distinctly.
Diagnosis
Taking on the myeloma caregiver role
In the beginning, things were happening so fast that I couldn’t fall apart. I had to get the information. I didn’t cry when the doctor would tell me whatever. My crying took place at night when I’m on that couch in the hospital room [where] they made my bed.
He’s sleeping. I’m crying and praying. Prayer got me through. I would leave his room sometimes and sit out in the lobby area. I would call close friends. I have some close friends that are like sisters to me.
I called my own doctor, who’s a very close friend of mine. Doctors just tell you matter-of-factly and that’s how she did it. She was like, “Look, if it is that, here’s the deal. It is incurable, but it is treatable. It’s going to be rough in the beginning.” I remember those words distinctly.
I was having those kinds of conversations with my mom, with my sorority sisters, a friend from church, and my pastor was also dropping in. He would show up at the hospital [late] at night because he could always get in.
I was running on adrenaline. I was in survival mode and all I knew is what I had to do.
Getting help
My pastor was saying to me, “Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?”
I was exhausted by then. I had dropped 27 pounds or so in 4-5 weeks because I was running on adrenaline. I was in survival mode and all I knew is what I had to do. But it wasn’t good for me. That was how things were.
I knew that I needed to talk to somebody. I’m sitting in this hospital room. He can’t communicate with me. The kids weren’t in a position. I knew I had to reach out to my closest circle.
My village is amazing. What I got from them was talking. I would advise [you]: talk to somebody. Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust. That’s how I got through it.
I started to make notes to myself about the business [and] things that needed to be taken care of. That’s when the shift happened. Crying, sitting in that hospital, we had no idea how long we would be there. I knew that I had to take care of some things.
I’m a lawyer. I have been for 37 years. I also have a market research consulting business. I used to work at Procter & Gamble when I was in law school. Meanwhile, I’m sitting in a hospital room, thinking I have a mortgage to pay.
Financially, I had to make sure we were good. But I also knew that there were things like disability. At some point, the diagnosis came so I’m like, “I should probably check about disability.”
I had a fight with an insurance company that I won’t name because they started sending me letters saying you took him to this hospital and it is out of network. I’m like, “You must be kidding me. I don’t know if he’s going to walk out of here and you’re talking about out of network?” I won that fight because I took him to [the] ER and when you go to an ER, who cares about [the] network?
The doctors were cheering me on. I started establishing relationships with all of them. “Marsha, what’s going on today?” They were asking me about the business of it all. “Did you beat the insurance company yet?” “What about Medicare? What about Medicaid? What about disability?” That was the relationship and that was the environment in that room.
If I leave the hospital to come home to shower, to lay down for a minute, a nurse would have my phone number and would promise to call me if anything went down in that hospital room.
My pastor was saying to me, ‘Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?’
Reaction to the diagnosis as a myeloma care partner
I decided that I have to be part of this medical team.
As lesions were up and down his spine, it affected his entire body. He couldn’t even move his arms. He couldn’t lift them. [On] the hospital bed, he was more comfortable with pillows under each of his elbows. But I had to do the lifting. At times, the nurses wanted to, but they were not gentle enough for me so I did that.
That’s when advocacy started for me. When the doctors would come in, I would connect the dots for them because [there were] so many of them.
Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust.
Treatment
The doctors said to me, “We want to start treatment,” which they did, and that was the treatment he was allergic to. It was two shots that I remember that nurse coming in one shot one week, came back, and gave a shot the next week. Then his lungs started bleeding. They figured out that’s what it was.
I have to say that those two shots knocked much of those bad cells out tremendously. There’s always a good and a bad. I’m thankful because it knocked the M protein way down, but they had to stop it.
He had to stop all treatment for some months until his lungs got clear and they figured it out. But the doctor said, “Here’s what can happen. We need to treat him. It could be we’ll never give him that again, but it could be pills.” My big question was always: is it chemotherapy?
They were throwing around the word “immunotherapy” and they had to explain that to me. When they started treatment again, they did start him on a regimen of some of the therapies, the pills.
I had to be very careful with those. Those things were scary. When I came home, they were like, “Don’t touch them, and don’t let anybody who might be pregnant or would get pregnant in the future touch them.”
Pretty early, they started talking to us about a stem cell transplant. He was diagnosed [on] January 17. By March 18, he had a stem cell transplant.
Making medical decisions
The decision was pretty much mine. I share it with him as much as I could, but I didn’t want to burden him with anything. I needed him to concentrate on getting well.
I said, “Listen. He’s not going to worry about anything. He’s not going to worry about finances. He’s not going to worry about this treatment. I’ll tell him what he needs to know.”
Role as care partner post-transplant
Love the team that we worked with. We met a lot beforehand.
He stayed in a wheelchair for a while. He had to learn to walk all over again. But by the time [of] his transplant, he was walking again.
I would take him to the doctor and they explained exactly what was going to happen. “We have to collect those cells. We have to go in the hospital then we’re going to give him this heavy dose of chemo and all of his numbers are going to bottom out.”
That transplant was tough, but he did it. God brought him through that. It was hard. It happened exactly like they told us.
I will say I thank God for that transplant. Put him in complete response. There’s no spike detection, no protein detection. He gets a check every month.
Just a multitude of emotions. It’s a journey. It’s up and down. We’re hopeful.
That transplant was tough, but he did it. God brought him through that. It was hard.
Advocacy
What was the shift for you?
My husband started getting better. That was when it switched in my mind. You can be an advocate for other people because home is taken care of to a degree. Things have settled down. You need to give back.
The advocacy that I do now is the “give back” part. I never want anyone to be caught off guard [by] multiple myeloma. I know there are a lot of other things out there to be caught off guard about, but for me, it’s multiple myeloma.
If you know what it is, know enough to ask your doctor what it is, that is what I’m trying to do. I share with people what it’s about.
Once you are taking care of someone with myeloma, be their advocate because it’s a journey. It can be challenging at times so they need somebody.
We are often diagnosed with low risk. However, we’re dying more.
Learning more about multiple myeloma
In the beginning, I didn’t want to know the details about the disease, let alone how it affects anybody. I just did not. At some point, I decided [I] need to know.
I happened across HealthTree and other organizations that had information about myeloma. What I learned was that Blacks are predisposed to the diagnosis two to three times more likely than Caucasians to be diagnosed with multiple myeloma.
Honestly, my reaction was, “Of course, we are, like other stuff, like everything else.” That was a turning point for me.
The other thing I learned was more men than women are usually diagnosed. I learned that African Americans are, on average, four to five years younger being diagnosed.
The thing that really got me was that African Americans quite often have lower-risk genetic myeloma. There are lots of kinds — low risk, high risk. We are often diagnosed with low risk. However, we’re dying more.
The doctors are saying you’re diagnosed with low risk, more likely, if — and that is the operative word, if — you can receive equitable treatment — the treatment that’s best for you, just like Caucasians would receive the treatment that’s best for them — your outcomes could be better.
Then we’re into the whole health equity, disparities, and inequities space. When I look for people to collaborate with, I’m looking for people in those spaces because those organizations and those people get it. If we could just get equitable treatment, we could have better outcomes.
Now I want to be clear. I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.
It goes back to awareness. We don’t know there’s such a thing so that’s where it starts.
I’m doing a campaign now. “Doctor, could this be multiple myeloma?” If I could teach everybody [that] if you’re not figuring out what the diagnosis is, you don’t know what’s wrong, [and] you have these symptoms, to say to your doc, “Doctor, could it be multiple myeloma?” Because then the testing could start.
The first thing is we just don’t know about it so we’re not aware of it. We’re not educated about it. But then even when you think about diagnosis, there [are] still these disparities.
Before a diagnosis, there are disparities because we’re not always taken seriously when we present our symptoms to a hospital, to a doctor, or to a nurse. Our complaints about what’s going on are sometimes minimized. We’re not heard. Testing is not being done proactively to figure out. That’s even before diagnosis.
Then after diagnosis, we have all these social determinants of health that are still there. We might live in an area where social socioeconomics [is] low. We might not live in an area where an academic cancer institution is. We may not have transportation to get to these academic centers. We may not know. We don’t get that influx of information. It can be all kinds of things.
Then when you talk about clinical trials for African Americans, I might not be in a financial situation [where] I can take off X number of weeks to travel to wherever to be in this trial. We might not have as simple as Internet in [our] homes.
Those are the things that I’ve learned. Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.
I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.
Importance of testing
It’s huge. Those are difficult medical things. Some stuff still just kind of goes over my head and I’m just like, “Oh, I can’t even understand that.” But what I do know is: ask. Know enough. For instance, know the common signs and symptoms.
You get your blood work done. It could be high calcium, there could be renal dysfunction so your kidney numbers might not be right, you might be anemic, and you could have bone pain. Those are the big ones. The acronym for that is C.R.A.B.
Know enough about that that if you’re going through something, you ask your doctor. “Doctor, could it be multiple myeloma? Can you test me for it?” You don’t even have to know what the tests are.
Here’s one thing that happens in our community. Everybody Black is told that we’re anemic. At some point, all five of us in our house have been told that we’re anemic. And I heard one of the Black myeloma specialists say, “We’re not anemic just because we’re Black. We’re not anemic because we have this melanin in our skin.”
Push back on your doctor because it could be something very simple — you need to take iron pills — or it could be something very serious — like myeloma.
That’s what I say to people. You don’t have to be a doctor. You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.
I always say to people who are then diagnosed: have somebody go to appointments with you or somebody to be there for you [to] take notes because you can’t get everything. I automatically take notes because that’s what I do, but not everybody does that. You can even take notes on your phone. There has to be a level of self-advocacy in this space that will serve you well.
Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.
Distrust of the medical system
There’s distrust for good reasons. When I think about my grandparents, that generation was like, “Absolutely not. You will not use me as a guinea pig.” Those were the words because there were situations where Blacks were not done right. We lost lives and it was just a terrible situation.
Those events are in history. We know what they are. It wasn’t even done in a manner that tried to make Blacks feel like we were trying to do the right thing. It just was not right.
Then when I look at my mom’s generation, she still has a lot of distrust. “I’m not sure what these doctors are doing.” You look at my generation, it’s carried down. It’s even carried down when I look at my kids.
Now, I think it’s getting better as we go down the chain. But it’s still very real.
You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.
Importance of having family conversations
[In] the Black community, we don’t always openly share. It’s not because we don’t want to help our families. I’m thinking about my generation. We were taught that what goes on in our household stays in this household. You will not go out of this household talking about what goes on.
When my husband got sick, my first go-to was we will not play this out [on] social media. Even my generation, that’s what I think about. That can be a concern in the Black community because we absolutely need to share, especially with our immediate families.
I just say to families: share as much as you’re comfortable with. Send this brochure out to your circle. It’s about myeloma. Just share that. You don’t have to share anything about [yourself], personally, but share the information.
Words of advice
This is the work that just brings me joy. I’ve never shared information with people. They thanked me and hugged me.
When I think about [my] career, I’ve talked to a lot of people. I run my businesses. I would have to share about my business. “Come to me. As a lawyer, I can do this for you. I can do that for you.”
Although I was helping people, it pales in comparison to [saying] to someone, “Have you ever heard of multiple myeloma?” “No. What is it?” And I tell them and they’re like, “Ooh. Is there a test? Can I get screened? What do I need to know about it?” That brings me joy that I feel like I’m impacting lives one at a time.
As I look at other people who are doing the same thing and other organizations who are doing the same thing, I’m like, “Yeah, this is the important work.”
I have to thank my family and my close circle. Especially, my family, I can’t do what I do without them. I’m still working my job. My consulting and practice are there for me when I need them. My close circle, that village, is always there.
Barbara Kivowitz, Caregiver Expert & Author
“A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
Multiple Myeloma: How Your Race and Age Can Affect Diagnoses and Treatment
Valarie Traynham
Multiple myeloma is the most common blood cancer among Black patients in the U.S., but many of those patients have an entirely different experience.
Studies show that Black patients respond better to newer treatments but are still twice as likely to die from the disease.
Patient advocate Valarie Traynham speaks with Shakira Grant, MBBS, of the UNC Medical Center. They discuss the barriers many Black patients face, how it impacts their care, and what can be done to help improve their outcomes.
Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
Valarie Traynham
Introduction
Valarie Traynham: I was diagnosed with multiple myeloma in 2015. Being a patient advocate, I want to be able to guide others through the process. When I was diagnosed, I did not have someone to go to and I think that’s very important. Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
I’m just so excited at the work that Dr. Grant is doing because it’s much needed. It’s an area that needs focus and she’s doing a wonderful job [of] getting that focus out there.
She focuses on a population of patients in the myeloma world that oftentimes [is] overlooked. It’s very important for that population of patients to be looked at and cared for and really understand what they are going through.
Dr. Grant is from the University of North Carolina and she focuses on geriatric multiple myeloma, health, and research.
Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for Black older adults with multiple myeloma.
Dr. Shakira Grant
Dr. Shakira Grant: I’m primarily here to talk a little bit about our research and how this fits into sharing stories of patients and caregivers, which our team is really passionate about.
What really drew me to this type of work was this love for trying to bridge this gap in terms of the disparities that we see existing within not only outcomes but also survival for Black and white patients with multiple myeloma.
Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for older Black adults with multiple myeloma. It’s really important for us as a research team to address some of these healthcare access barriers, which largely drive the disparate outcomes that we see in multiple myeloma.
We presented two studies. For the first one, we wanted to understand what barriers patients and their caregivers encounter when trying to seek care for multiple myeloma.
The top takeaway from that study is that many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms. Often, patients reported being dismissed by their doctors and being chalked up to just getting older and then repeating labs again in three months.
From this particular study, while we identified other barriers, including financial barriers, we do recognize that there is a need to focus on how we make the diagnosis, ensuring that patients are getting the diagnosis on time, which would allow them to enter into a care pathway where they can begin their treatment and minimize any chances that they will have any poor or adverse effects from multiple myeloma.
In terms of the other study, we wanted to look at factors that influence the participation in clinical trials for Black patients in particular. We did this by looking at the perspectives of patients with multiple myeloma as well as their hematologists.
One of our main takeaways from this is that the patient and their relationship with their doctor is really critical when trying to decide if a patient is going to be offered the opportunity to participate in a trial. Based on these findings, we do recognize that there is a need for more targeted interventions that address several steps in terms of communication between patients and their doctors to ensure that we have the best chances of offering clinical trials to a diverse patient population.
Many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms.
Dr. Grant
How do we get more diversity in clinical trials?
Valarie: I heard a lot about clinical trials. How can we get more minorities involved? What is that like for the older population that you see in the clinic?
Dr. Grant: Overall, when we think about increasing representation in clinical trials, we are coming up against two compounding factors. One is the older adult and then it’s the older adult who also identifies as having Black race.
For me, in clinical practice, one of the things that we try to do is to not only look at [the] patient’s chronologic age, but we also look at the functional age of patients. How well are they able to do their activity and to get around day to day? I believe that [is] probably better to assess eligibility for these particular patients for clinical trials in terms of Black representation or increasing representation of minoritized populations.
It is important for us to realize that myeloma does tend to affect an older adult population. We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together. Our efforts to increase representation should be geared towards the older adult population, as well as thinking about the racial, ethnic, and minoritized populations.
We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together.
Dr. Grant
How would you advise older multiple myeloma patients to stay positive?
Valarie: For a newly diagnosed older patient, how would you advise them? [There’s] so much going on. They’re getting the diagnosis. They’re trying to make it to the clinic. How would you advise them to stay positive and look for the good in the situation that they’re facing?
Dr. Grant: The thing that is really important that I’ve seen come out not only [from] our research but in my own clinical practice is the need to have a social support system. In our study, we looked at informal caregivers who were oftentimes spouses and, in some cases, adult children.
I really do think that having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you with the amount of information that you’re getting, scheduling, [and monitoring] any potential treatment-related side effects.
I think [it’s] really important for patients to also seek knowledge about multiple myeloma from credible resources. Read as much as possible what you can about this disease, about things that you can expect, and then come to your provider’s visit prepared with those questions ready.
Having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you.
Dr. Grant
Ask [about] things like clinical trial participation, if your doctor hasn’t mentioned it. It’s really important for patients to take that first bold step and say, “I’ve read about clinical trials. Do you think this could be a potential option for me?”
This really moves into this idea that we want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Valarie: I’m so glad you said that because that is one thing that I always try to tell newly diagnosed patients as a patient advocate. Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
We want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Dr. Grant
How do you build medical trust in Black communities?
Valarie: We know that trust in the African-American community is a big deal and that’s what we are focusing [on], too: raise trust and build trust in the community. As a physician, what are some of the things that patients are mainly dealing with?
I was listening to something and they talked about words matter — how you talk to patients, understanding patients, words that you use, words that the patient uses, and understanding and gathering information. Tell me [about] your thoughts on that.
Dr. Grant: What we’ve seen in our studies time and time again is that there is this legacy of medical mistrust that has been brought on by past research events where Black patients were intentionally harmed by the research enterprise and so it takes quite a while to be able to reverse those effects.
Things that we’ve learned from talking to patients [and] caregivers that can help close that trust gap is really working on our communication style as physicians, making sure that we’re using empathic communication, [and] letting our patients see that beyond the doctor title, we also are real people with real lives and lived experiences.
Don’t be afraid to pull back that curtain sometimes and let patients see that that relationship between patients and providers really helps to build up trust.
Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
Valarie
I think of a particular quote from one of our studies where a patient said that it’s all about [the] relationship and if we need to build trust, we really need to be focused on the relationship. That particular participant went on to say that really they believe that the physicians could benefit from relationship-building training.
That really stuck with me because I recognized that trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
When it comes time to think about the research, there are different strategies that our team [uses] to really help foster trust and to help engage Black participants in our study. Some of those strategies have been described in the literature, but really it’s about having a team that is representative of the population that we’re trying to engage and helping them realize the value of this research and why we need to do this, especially for the Black community.
Trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
Dr. Grant
We need to recognize that access to healthcare is dependent on several steps. This includes the patient’s ability to perceive their need for healthcare. Then they need to be able to seek out those services, reach the services, pay for the services, and engage with their healthcare provider.
I would encourage patients: if you are experiencing symptoms you’re concerned about and you’re seeing your provider and you don’t think your provider is necessarily answering or addressing those questions, don’t be afraid to talk to somebody else. Talk to another provider and do some additional research and see if there is potentially another option for you to have your symptoms examined.
They have to think about [the] costs of medications but also when they’re coming to the cancer center, the cost of parking, the cost of gas… all these things are really additive for patients, especially when they’re on a fixed income. This idea about having to pay twice was centered around the need to pay for all of these other healthcare services while also attending to the high cost associated with paying for parking at the health center.
In terms of other economic impacts, things like parking, don’t be afraid to tell your provider, “This is challenging for me to pay for parking,” or, “I’m having challenges just paying for my medications.” Because honestly, sometimes the visit time is so short that we don’t always have the time to ask if you are having financial concerns. We don’t want that. These financial challenges are a limitation to you getting your care on time.
Don’t be afraid to talk to your providers if you have concerns. Make those concerns known… If you’re having financial challenges, continue to share those concerns and ask about available resources.
Dr. Grant
Barriers patients face that prevent their care
Valarie: How often do you have patients that [face financial limitations?]
Dr. Grant: We actually see this, in my practice especially, quite often. It’s not uncommon at all for patients to be concerned about the cost of parking. Patients would express concerns about their ability to pay for parking. Sometimes it’s a bit of a challenge knowing what to do in those scenarios.
There are some efforts now at our cancer center to try to provide more accessible parking in terms of financial costs and reducing the cost of that, but it’s not always widely available to patients.
Don’t be afraid to talk to your providers if you have concerns. Make those concerns known. That goes from even when you’re first presenting, before you’re diagnosed and you’re concerned about it, keep sharing those concerns with your provider.
If you’re having financial challenges, continue to share those concerns and ask about available resources. There are more resources out there than sometimes patients may actually think or may actually have knowledge about.
Conclusion
Valarie: Thank you for joining us today and going over all of this. It’s so important what you do in the field of myeloma.
What we’re dealing with is meaningful. It’s life-impacting so it’s very important that you understand if you’re not being treated right or you feel that something is not right, say something because it’s not okay.
You have the right as a patient to have something done about that. You are in control of your health. Don’t settle. Without you, it would just be a missing piece.
Dr. Grant: Thank you for having me.
If you’re not being treated right or you feel that something is not right, say something because it’s not okay. You have the right as a patient to have something done about that. You are in control of your health. Don’t settle.
Valarie
Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.
Dr. Samuel Washington is a urologist oncologist and assistant professor in-residence at the University of California, San Francisco. Dr. Washington’s research focuses on healthcare disparities.
In this conversation, he discusses how he became a doctor, the racial disparities in bladder cancer treatment and how to address those gaps.
Goldberg-Benioff Endowed Professorship in Cancer Biology, USCF
Education:
2007, UC Davis Bachelor of Science in Genetics, Minor in Latin
2012, UCSF Medical School
2018, UCSF Department of Urology, Residency
2019, UCSF Master’s Degree in Clinical Research
2020, UCSF Department of Urology, Urologic Oncology Fellowship
I commonly say no one’s intentionally contributing to disparities, but also very few of us are actively monitoring our own outcomes. We often see differences and attribute those entirely to the patient, [but] there could be things in our clinic or our clinical environment that we could impact.
I was introduced to medicine when I was 7 years old, so I was one of those lucky ones that got early exposure. As a child, it was just the fascination of what people are doing. It hit all of the bases in terms of being a way to help people, but also a way to engage in an academic sense in something that was quite interesting.
You’ll see a lot of us, particularly those in academics, there is an intellectual component to what we do that drives our research. The research drives the questions, and how to improve patient care feeds into the research in and of itself. It becomes this kind of self-fulfilling, self-enriching cycle.
How were you introduced to medicine?
I grew up in Houston and a town outside of Houston called Sugar Land, Texas.
No one in my immediate family was in medicine, but my mother had a friend who was a cardiothoracic surgeon. She was always trying to get us exposed early to different professions, and thankfully she was in a job that allowed us to do that.
Once my family heard that, they kind of fostered that throughout. It became really trying to find ways to volunteer or get more exposure throughout my entire career up through college to understand what medicine looked like.
Underrepresentation in the number of Black physicians
I think even throughout medical school, we’re always told that Black patients are at greater risk of X, Y, or Z. It was just a way things were explained. We were supposed to memorize that these medicines work better in Black patients. Black patients were at greater risk of X, Y, and Z, and that’s just the way it is.
I think when you start to question that and understand the why, rather than just being presented with observations, it becomes a little bit more interesting. You see where the large gaps are. Then for me personally, we talk about Black men being at increased risk of prostate cancer, for example.
I’ve yet to see anything that could tell me what my personal risk is, myself being a Black man, a physician [with] higher education, formal education. The fact that we don’t have that, but we continue to talk about disparities just tells me there’s a lot we don’t know. Not much has been done to really flesh that out, generally speaking, within the field of urology. There’s a lot of area of improvement there that needs to be addressed.
Muscle-invasive bladder cancer
Disparities in the bladder cancer population
Overall, in general, we think of bladder cancer as either being muscle invasive, so growing into the muscle wall of the bladder — as I call the bladder kind of a balloon made out of muscle — versus non-muscle invasive, where it’s just on the surface or lining the inside of the bladder itself.
Our treatments are different, depending on which group you’re in. We know that for patients for whom the bladder cancer has grown into the muscle, across the board, people are not getting what our guidelines say they should be getting. Depending on the cohort you’re thinking about, half of people will get some guideline-concordant treatment.
There’s a question of guidelines being appropriate versus equitable, but we know that based on where you live, how far you are from a facility that treats bladder cancer routinely, [and] who you are are all things that can impact the quality of care and the type of care that you get. I think those are the key things that we see in bladder cancer that we hope to look at with some of our research.
What does “who you are” mean in this context?
It can mean a lot of things. A lot of the research that I’ve looked at is around race as a social construct, so not just biology and seeing that there’s a biological difference between these peoples and that that is the cause of the differences and outcomes that we’re seeing.
[We’re looking at] how society is framing these people, Black versus White, insured versus not, educated versus not. All these different identities impact one another to lead to these outcomes that we’re seeing that are differences between groups.
How many bladder cancer patients have muscle-invasive cancer?
When we look at the overall cohort, I would say, depending on what you’re looking at, 25%, around there, 20%.
More aggressive treatment and worse prognosis for muscle-invasive cancer
If we are talking about bladder cancer that’s grown into the muscle, that’s muscle invasive, the gold standard for the last 20, 30 years has been removal of the bladder and rerouting the urine through one of many different ways.
What has been increasing in interest recently is trimodal therapy, which means using 3 different methods to preserve the bladder but still treat that aggressive bladder cancer. We know the type of treatment you get [and] how long it takes for you to get that treatment are all factors that impact your survival after diagnosis.
Recommended guidelines for muscle-invasive bladder cancer
I’d say broadly for muscle-invasive disease, our two options currently would either be radical cystectomy, which means surgery to remove the prostate and bladder and reroute the urine, versus trimodal therapy. It’s a combination of radiation, chemotherapy, and scraping out any residual cancer there may be to treat the cancer but leave the bladder in place.
As part of that workup and evaluation, you should be getting scans to understand if all the cancer is just in the bladder or if it is moved outside the bladder. As part of that, you should be talking with a medical oncologist to understand if you can get chemotherapy beforehand or after to help treat the cancer in any small cells that may be in the bladder or outside. If those things aren’t happening, if you’re not getting guideline-concordant care, then we know we’re chipping away at your survival risk over time.
What other treatment could they be getting, and how does that affect the outcome?
What that means is if patients aren’t getting treatment within 90 days of their diagnosis, if they’re not getting guideline-concordant care, they’re getting care that may not cure or control the cancer. Functionally, what that means is they’re going to be at higher risk of the cancer spreading [and] higher risk of eventual mortality or death caused by the bladder cancer, which is what we want to avoid.
Gaps and disparities in treatment
What are the current gaps in guideline-based treatment?
Guidelines in general are a set of recommendations by our overarching governing body telling us, based on the most updated literature in research and the consensus statement of experts, what this patient should have based on the type of cancer or disease that they have.
Those are what our guidelines are. It’s taking the mystery out of medicine, but it’s really kind of an algorithm. We find where these people fit in terms of the cancer staging and characteristics. Then we look at the guidelines, and they tell us what should offer the best outcomes for them.
Major governing bodies
There are a few — there’s our National American Urological Association, there’s the NCCN (National Comprehensive Cancer Network) — that are overarching organizations that accrue recommendations from experts in the literature to give evidence-based recommendations of what we should do.
Frequency of updates
Almost every year or every few years, particularly if there’s a new clinical trial or a new change that really changes the way that we practice in terms of a new study or a new drug.
Results of studies on treatment impact by race
From a study that we did using National Cancer registry data, we saw that when you start looking at not only disease characteristics but other non-clinical factors — so patients’ education, their insurance, so on and so forth — we saw that Black patients had 20 to 25% decreased odds or likelihood of getting guideline-concordant care compared to white counterparts with the same disease treated in the same location.
You start to see differences like that across different groups. The issue is that it’s not uniform, so each group has a different relationship or association that we’re seeing there, and we don’t have a clear understanding of why that is.
What’s causing these differences in outcomes?
It’s a good question. Thankfully, there are large studies happening now focused on patient-reported outcomes, so what’s going on from the patient perspective. I would say what’s not happening now is what’s happening at the physician or the facility level.
We have cancer registry data that is collected, organized, and reviewed by different research groups, but it doesn’t really tell us in a way that gives us feedback how our practice is performing. It doesn’t tell us, are there disparities at our practice? That requires a large infrastructure of a practice or an institution to be able to do that, and that’s not present everywhere yet.
What could be causing different treatment for White and Black patients with the same diagnosis?
Thankfully, over the last few years, we started to address structural issues related to differences in care, structural racism, [and] institutional barriers to care for some people. We’ve seen this come into play even with telehealth. Functionally, patients need to have a smartphone or a laptop in order to participate in telehealth. If you don’t have those, [if] you don’t have access to broadband, or reliable Internet, you can’t have the same outcomes. We’re not measuring any of this stuff.
We also have to take a look at the providers themselves. I commonly say no one’s intentionally contributing to disparities, but also very few of us are actively monitoring our own outcomes. We often see differences and attribute those entirely to the patient, [but] there could be things in our clinic or our clinical environment that we could impact:
The educational materials that we use and the required health literacy level for that.
How we provide access to care for different patients.
Are there things that could help patients in terms of transportation, social work, and so on and so forth?
Those things are not commonly measured at the same level that we monitor cancer diagnoses.
What cultural nuances affect the difference in treatment?
I think part of it is an understandable, and I would argue justified, mistrust in the healthcare system, given the history that we’ve had in the approach that medicine has used to justify some societal pressures and patterns.
I think what it comes down to often for patients that see me is for them, there is a shared life experience that we have that provides more comfort. That doesn’t mean that other practitioners that don’t look like them will not offer good care, but it does potentially provide a level of comfort that is not something that they’ve encountered before.
Instances of that that we’ve seen would even be prostate cancer screening, for example, in barbershops or in churches, bringing information to the patients, rather than us in our sterile clinical environment telling patients what they should have.
It does impact patients’ perception of care. We’ve seen how it impacts patients’ reluctance with new medications [and] adherence to different protocols. It does have an impact. It’s just that we haven’t measured it all that well thus far.
Advice for patients
What are some tips for patients?
I would say, generally speaking, if you see blood in your urine at any point, I would ask that that be worked up. That could be either just repeating a test, but oftentimes if you’re seeing blood in your urine, you need to see a urologist.
That’s kind of right up front in terms of not missing a timely diagnosis evaluation of potential cancer. If you have cancer that’s invading into the muscle, it’s worth asking, “Can I speak to someone that treats this routinely?” Because all urologists do not treat everything routinely.
I think that it becomes an issue when you see someone who does bladder cancer management as their primary focus versus someone who treats 1 or 2 bladder cancer patients a year. Both are trying to help you, but the comfort [and] the level of expertise in the nuanced information may be different between those 2 providers.
What should patients do if they feel something isn’t fine when their doctor says it is?
I think it’s worth asking, “Why is it fine? What would make it not fine?” I just have to remind people that everyone’s doing this already. I commonly get questions about negative tests [and] about positive tests. People are asking for more information. They’re looking for more information.
I think when people are worried about upsetting their doctor or getting the doctor mad for asking too many questions, that’s not really a thing. That’s already happening. I feel like people don’t understand that it’s happening all around us all the time in general anyway. It’s much more common than people would guess.
How to advocate for yourself with your doctor
I’d say the key things that I try to tell everyone are you need to feel comfortable with what’s happening. If you’re not feeling comfortable with the provider or the information, you need to feel comfortable.
If that means asking more questions of that provider, if it means finding other ways to get more information like the Bladder Cancer Advocacy Network, if it means going through support groups or peer groups for others who’ve been down that road. Getting more information is key so you feel comfortable.
Sometimes that’s a second opinion. Sometimes that’s just, “Hey, can I ask this doctor a few questions in an informal setting?” At the end of the day, you have to feel comfortable, so whatever it takes for that, because people are already doing it.
Other factors that can affect diagnosis and treatment
Generational differences in comfort level at the doctor
Depending on the generation, people’s background, [and] their comfort with health literature and all of the jargon we use, there’s different levels of how comfortable people will feel asking questions of the provider or asking for a second opinion in general. But that’s always an option. It’s covered by most insurances, and there are ways to ask questions in a manner that will not alienate your provider if that’s a concern.
It may take longer for older women, particularly women of color, to be diagnosed
I’d say women who are found to have repeated tests of blood in the urine or they see blood in the urine, sometimes these can be attributed to recurrent urinary tract infections. Whether or not there’s a positive urine culture [or] urine test showing bacteria, they will be routinely treated with antibiotics.
But what is missing is the workup to make sure that it’s not a cancer that’s hiding there and causing the bleeding. That can lead to delays as people get treated with antibiotics, and you don’t see any change in the symptoms. It’s because we’re not treating it correctly.
Particularly in those settings, particularly in women who are past menopause, postmenopausal bleeding is most certainly a concern to make sure we don’t miss a cancer diagnosis or something else that may be going on.
Psychological barrier of seeing blood in your urine
I would say I would feel incredibly worried if I saw blood in my urine. It takes a little bit of time and a little bit of effort to get past that and understand that is not something that’s normal.
I always tell people I would rather you ask the question, get it evaluated, and catch something early or it be nothing than the other way around, delay things, and miss a timely diagnosis.
If nothing’s changing, that’s a huge red flag that it’s not being addressed properly
I tell everyone that we are just humans who practice medicine. We are not infallible. We don’t know everything. It goes against the idea of a physician knowing everything. There’s a lot we don’t know.
I think at the end of the day, you need to make sure you know if there’s cancer or if there’s something else there. Understanding that a workup needs to be done and if you’re trying things and there’s no change, it’s time to reevaluate things.
Addressing these issues
What can we do to comprehensively address the inequity?
I think there are a few different facets to this. What is done currently, I would say, in some of the patients that I even see, when they are not getting satisfactory answers from their provider, they reach out to friends, or they ask, “Hey, can I see your doctor? Hey, do you know a doctor? Can I talk with that person?”
That happens to me. It happens [to] my colleagues all the time. That’s a way to get more information. I think what needs to be happening kind of at a systems level is checks. We need to monitor these things. What is happening with patients? Are we seeing differences in outcomes in our own practice?
I think intuitively all providers will say, “No, there’s not,” but we know that that’s not true. It’s not intentional, but no one’s looking. I think that when it comes to advocacy groups, advocating to be part of these research projects [and] focusing on projects that are relevant and pertinent to the patient, rather than just the investigator or the clinician, is important.
I think when it comes on a regulatory standpoint, it’s very tough to pull that nuance into regulations without cherry-picking happening, so people kind of selecting or ignoring specific patients to buffer or pad their outcomes. There are a few different ways for us to improve it at different levels. At the end of the day, I think this is a multi-level issue that’s not just the patients. It’s not just providers, not just system.
Representation in clinical trials
There’s a whole different discussion of how clinical trials don’t reflect the population. How can we take information from a clinical trial and apply it to a population that wasn’t included in the study?
I would argue my goal would be to find patients and treat them so patients don’t need a clinical trial. Their disease hasn’t progressed to the point where they need that. That’s a goal that I have and others have, but it’s a little bit different than the recent push to include representation in drug clinical trials, for example.
Have you had Black patients thankful to have a doctor who looks like them?
I get it not infrequently that a Black patient will just say that they’re happy to see me or someone that looks like me. It just reminds me that of the urologic workforce, it’s less than 3% of us, for all of urology, that are African-American [or] Black. [It’s] a much smaller percentage when you start to chip away and look at different subspecialties.
Again, it’s a level of comfort and shared lived experience that some patients have. Multiple patients or just advocates come up to me and just say they’re glad that there’s someone that looks like them. They’ve never met a Black urologist or a Black urologic oncologist, and I think that matters.
It may not be important for everyone, but I think for some patients, it is a game changer in their comfort with the care that they’re getting. It has absolutely nothing to do with the quality of the care I’m actually providing.
What can treatment providers do to make their patients more comfortable when they don’t have shared lived experiences?
I think embracing shared decision-making in general. It’s become part of our guidelines. Everyone says it should happen. Understanding patients’ level of comfort with our jargon, understanding if patients have questions, asking them what other questions they have, [and] making sure that they truly understand what’s going on are little things that we can do.
When you start to see patients who are lost to follow-up or missing appointments, simply asking them, “Is there something that can be helped? Or what barriers are you dealing with?”
[These] are questions that are not part of our questionnaires. They are not part of our clinical algorithm, but they’re very impactful for the care for the patient. I think asking those questions, which only takes another minute or two, can be hugely impactful.
Upcoming research on bladder cancer
I’d say that there’s a lot of ongoing research. I would tell patients who are interested in more information about bladder cancer, the treatments, support groups, and ongoing research, there are many outlets out there.
Bladder Cancer Advocacy Network is one that is focused entirely on this. Also, just asking your provider, “Are there resources here that I can look at? Are there clinical trials or support groups or information?” [That’s] another thing that I would like to get across.
Role: Center Director Urologic Oncology Focus: Urological oncology, including kidney, prostate, bladder cancers Provider: Cleveland Clinic
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Dr. Babis Andreadis of UCSF shares his approach with patients, the importance of patient self-advocacy, whether to ask for a second opinion, and more on shared treatment decision-making...
Oncologist: Specializing in breast cancer | HER2, Estrogen+, Triple Negative, Lumpectomy vs. Mastectomy Experience: 30+ years Institution: Stanford Medical
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Role: Radiation oncologist Focus: Specializing in radiation therapy treatment for all cancers | Brachytherapy, External Beam Radiation Treatment, IMRT Provider: Salinas Valley Memorial Health
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Ebony’s Stage N2 Muscle-Invasive Bladder Cancer Story
Ebony was only 45 years old when she was diagnosed with stage N2 bladder cancer. Having lost her own father at a young age, she had to process the fear of not being there for her 3 sons.
She then underwent MVAC chemotherapy and an 8-hour surgery to remove her bladder. As part of this surgery, part of Ebony’s small intestines were used to create a neobladder.
Ebony shares her cancer journey, including taking control of her hair loss, the experience of African Americans in the medical system, the importance of self-advocacy and support, and using her story to be a light for others.
Name: Ebony G.
1st Symptoms:
Microscopic amount of blood in urine
Increased to visible amount of blood
Pain when urinating
Weight gain in midsection
Diagnosis (DX): Urothelial muscle-invasive bladder cancer
Staging: N2
This means the cancer has spread to 2 or more lymph nodes in the region
Tests for (DX):
CT scans
Checking IUD for issues
Cystoscopy
Biopsy
Treatment:
MVAC chemotherapy
Methotrexate, vinblastine sulfate, doxorubicin hydrochloride (Adriamycin), and cisplatin
This interview has been edited for clarity. This is not medical advice. Consult with your healthcare provider for treatment decisions.
Introduction and First Symptoms
Tell us about yourself
Hi, my name is Ebony, and I was 45 when I was diagnosed with bladder cancer.
I am married. I have 3 sons. I am an engineer by day. I just want to live my best life like everyone else. Those are the biggest things. I really want to live my best life and help others do the same.
What were your first symptoms?
My initial symptom was after a visit with my annual gynecologist, and they noticed that there was blood in my urine [at] a microscopic level. I couldn’t even see it, but a microscopic level of blood in my urine. They referred me to a urologist to try to look into what was going on. [It] kind of freaked me out.
That’s how it started over 2 years ago, pre-COVID actually. I proceeded with the urologist. They couldn’t find anything. I had different scans [and] different scopes that were performed and initially couldn’t find anything.
He said, “We’ll just keep you on a schedule. You’ll just keep coming every 6 months, and we’ll check on you.” I didn’t have any other red flags. Generally very healthy. [I] never went to the doctor except for my physicals. [I was] not on any other medication, [and I had] no high blood pressure, cholesterol, diabetes, no other health issues. [I] was pretty active.
The doctor was kind of like, “We’re not seeing any smoking gun, so we’ll just keep watching you.” That’s how it started. [I] didn’t have any pain [and] no other symptoms.
Looking for potential causes
We looked at several things. We initially thought it was a UTI, so I was prescribed an antibiotic and then thought, “Okay, we’re good to go.” It kept going, so then the next thing was, “Okay, let’s check your IUD. Go back to your gynecologist, check the placement of your ID, [and] make sure that that’s in place.”
[I] did that. [The] gynecologist was like, “Yep, it’s good. No problems.” Then they thought we have to confirm what the source of the blood was. Is it just menopausal stuff going on? What’s going on?
I’ve read and studied that most women are misdiagnosed because I guess our bodies are a little complicated. People go grasp for the initial things that may be probable, but all of those things were batting zero.
He referred me to a kidney doctor to look at the functions of my kidneys, and all was well. I went back to the urologist, and they were like, “Well, we’ll just keep an eye on you.” That eye on me was a check every 6 months.
What scope did they perform?
I can’t remember the technical term right now, but it was a scope where they basically filled my bladder with liquid and checked. It kind of would magnify if there was anything going on in my bladder.
There wasn’t anything to be found. Generally, it made me feel like I needed to urinate. [It] wasn’t the most comfortable feeling. That was one of the initial scopes, and then also a CT.
How were you feeling through this process?
I wanted to trust my doctors to believe that they would know what was wrong. When the doctor was telling me, “Well, we don’t know,” I was like, “Okay, if you don’t know, yeah, I’m a bit concerned.”
He even told me at one point, “There are some people that over time, as they get older, their bodies function differently, and maybe that’s just you. I was like, “No bueno. No, I’ve never had this as a problem.”
I remember telling my husband, “I feel like the woman with the issue of blood, like biblically. It just won’t stop. I don’t understand.” At that point, a year passes, and now I can actually see the blood when I went to the bathroom.
Now it’s more prevalent, and my doctor is still saying, “Maybe this is just what your body’s going to do.” I was like, “This can’t be likely. This can’t make sense.”
I even started gaining weight, particularly in my midsection. I remember thinking I never gain weight in my midsection. With each of my boys, I gained 60 pounds when I was pregnant. But every time, I always gained weight in my hips and thighs.
For me to gain it in my tummy area, I was like, “This doesn’t seem right.” But even the nurse at the practice was like, “You’re in your upper-40s, mid-40s. Maybe that’s just what’s happening. You’re just gaining weight in a different way. I was like, “Yeah, no.”
I was very concerned because they couldn’t figure out what was going on after a year and a half. It got to the point where I was like, “If they don’t find something this time —” fast-forward, that was September 2021, ” — I’m going to someone else.” I also at that point had had the IUD removed. [I was] just trying to remove every possible potential cause, and we still couldn’t find anything.
Can you list those emotions you were feeling during this?
Confusion. Despair at some points because I just really didn’t know. I was wondering if there was some underlying something. I was Googling things [and] trying to figure [it] out. [I was] just kind of confused and lost as to how the professionals don’t know.
Honestly, I had never heard of bladder cancer. It never occurred to me as something to delve more into. To be honest, I don’t ever recall my urologist saying, “If you see this additional sign, then maybe we should dig more, or let me know.” I was very concerned and stressed about what this could be.
Finally Getting Diagnosed
How did you finally get a diagnosis?
The other thing was I’m not sick typically, and I remember actually coming down with COVID [in] August of 2021. Everybody was catching COVID, but still, I was like, “I’m never sick, and now all of a sudden, here we are.”
Then I actually started feeling pain when I urinated. I was supposed to go to the urologist [for] my normal 6-month check that August. Due to him being on vacation, we rescheduled the appointment. When we rescheduled the appointment, then I ended up with COVID, and so that appointment was pushed off to October.
I went in again, and he said, “You know what? We’ll go ahead and do another CT. Then we’ll see from there.” We did another CT in October. Then he called me in his office, and he’s like, “Something’s abnormal here. We’re going to need to have a surgical procedure because I see something.”
He also did that scope, the same scope that he did that year prior. In that scope, he saw something, which freaked me out. Then he’s like, “I actually need to see you in surgery in the next 2 weeks.”
I was like, “What? 2 weeks? Surgery?” My last surgery was, at that point, probably 12 [or] 13 years ago when I’d had my last C-section.
We had the abnormal CT, the extra scope that was abnormal, and then the surgical procedure to biopsy this growth that he saw to see more of what was going on.
Processing the possibility of cancer
That was in person. For that appointment to talk about doing the surgery (prior to the biopsy), I was by myself.He did [describe it as a growth or tumor], and I instantly thought cancer.
I was like a ball of tears, and the nurse that was with me said, “You’re going to be okay.” She was extremely comforting. This was a different nurse. She’s like, “I’ve been through this before. You’re going to be just fine.”
But at that moment, I remember thinking, “I’m going to die. What is this? How did we catapult from, ‘Not only it doesn’t seem like much, [but] this is probably what you’re going to always just deal with, because this is just the way your body is functioning,’ to, ‘We need you to have surgery in 2 weeks and dig further to understand what’s going on.’”
It was pretty traumatic by myself in the office, but the nurse tried to reassure me and tell me, “You’re going to be okay.”
What was the value of having someone trying to comfort you?
Honestly, I didn’t believe her, but it was a bit comforting to know that someone had been through something similar. I didn’t have my wits about me to ask more detail of exactly what she meant that she’d been through it, and I haven’t seen her since.
After that few weeks, the urologist ended up referring me to a surgical urologist, one of the top urologists in the area, to proceed with my treatment. While it was a bit comforting, I was still like, “Yeah, I don’t know that you can relate to what I’m going through. I don’t even know how you know what I’m going through. Did you really have this procedure?”
Did you feel a shift when you found out it could be cancer?
There were 2 shifts. That was one shift because I remember thinking, “I’ve trusted you for a year and a half to try to find something, and what was it about everything that has gone on in the past year and a half where you didn’t find anything?”
Of course, we trust doctors [and] trust that people are going to do things in our best interest. But I began to wonder what other signs were there that maybe you overlooked. I honestly was a bit angry because I thought, “I’ve been coming to you for a year and a half, and you haven’t seen anything. Now, all of a sudden, I need to be in surgery in 2 weeks.”
That was one shift, and then the second shift was when he told me specifically after the surgery that the growth was confirmed to be cancerous and that he wanted to refer me to someone else that could better help me.
Undergoing a biopsy on the growth
November 11th last year (2021) was when I had the surgery. I was extremely scared because even with my 3 C-sections, I was very alert in what was going on. At this point, I’m like, “Oh, you’re going to take me under?”
I’m just a bit paranoid about, like, am I going to come out okay? Then the fact that you have had a challenging time diagnosing me, and now you’re about to take me under to try to figure out what this is. I was Googling left and right [and] Googling the report to try to figure out, “What does this mean?”
That was on November 11th. Then we had plans for Thanksgiving to go visit family. I remember thinking, “You should be able to tell me what the results are almost instantly, even if it’s a week.”
But it was November 29th, 2021, before I found out that it was cancerous. The crazy thing was, in the meantime, I got this random text from another hospital not even in the state that was something about checking into the cancer center.
[It] freaked me out because at this point, it was in between me having the surgery and getting the results. I remember texting my husband, “Oh my God, does this mean I have cancer?”
But it was a total random text from a hospital not even in the state that we live in. He was like, “Ebony, don’t worry about it. That’s just a random text. It’s nothing.” But I was like, “This is way coincidental.”
Waiting for the biopsy results
It was like 6 in the evening when I received the text. I couldn’t call the doctor’s office because it was after doctor’s hours, so after the working hours. I remember calling the doctor’s office the next day, saying, “Hey, I got this random text. Does this mean that this tumor was deemed to be cancerous?”
The receptionist was like, “Oh, no, no, no, that’s not even affiliated with our practice.” But I was like, “Of all the times to get this random text… Is this the Lord preparing me for what’s about to come?” I’m thinking all the worst.
Nevertheless, we went to visit family for Thanksgiving, but the entire time, in the back of my mind I was like, “Am I going to get this result? When am I going to get the result? And is the result going to be one of my biggest fears?”
Fast-forward to November 29th. They called me in to come get the results. I remember thinking, “Okay, the fact that they’ve called me in can’t be good.” My husband went with me for that appointment, and that’s when I first saw the verbiage on the report to say that I had a high-grade urothelial, muscular-invasive bladder cancer.
I was like, “What? What does this mean? What stage? What?” I remember that was the second shift, where I was just devastated. I don’t know that I’ve ever cried like that after getting those results.
They diagnosed me with stage 2 urothelial muscular-invasive bladder cancer. I want to say it was staged N2 because a couple of my lymph nodes were impacted.
Next Steps After Diagnosis
Processing the full diagnosis
I remember my eyes just welling up. I couldn’t even read what was on the paper just because I was so emotional from what the diagnosis was. He was optimistic and trying to be encouraging in that visit.
I just remember thinking, “What if I hadn’t come back? I’m listening to you all, and you’re saying, ‘Oh, well, it should be fine. Your body’s just maybe designed to work this way.’ What if I hadn’t come back? What if I didn’t prioritize this visit based off of some of the other verbiage that y’all were sharing with me, yet me telling you something doesn’t seem right? What if I hadn’t come back? Now you’re telling me that I’ve got this aggressive tumor growing in my body, and now you’re telling me you’re going to refer me to someone else because it’s a little more complicated than what you thought. Really?”
Losing a parent at a young age
Imagine this. I’m a 45-year-old woman, married with 3 kids. Our sons at the time were 20, 13, and 14. When I was a senior in high school, my father passed.
When I heard the diagnosis, I instantly thought, ‘Here we go. I’m not going to be around for my children.’
It was a pretty quick sickness. I remember thinking, “He’s going to recover just fine.” But I didn’t know the seriousness of what was going on. I was devastated when he died my senior year in high school. There’s always been a part of me that has wondered, “What if that happens to me? What if my boys are left without me?”
I’ve gone through pretty much my whole adult life missing that presence. He wasn’t able to meet my husband. He wasn’t able to meet the boys. He wasn’t able to offer insight on different things. I wasn’t able to ask him questions like, “Daddy, what do you think about this? What do you think about that?” Just input that I would have loved to have received.
Worrying about leaving your kids behind
I’ve always wondered and prayed that that would not be my outcome. When I heard the diagnosis, I instantly thought, “Here we go. I’m not going to be around for my children. What are the things that I’ll be able to do so they’ll remember me, they’ll know me, [and] they’ll know my feelings for them? What can I quickly try to do where they will have fond memories of me?”
They’re still very young, and honestly, there are a lot of memories that I don’t have of my dad because I was young. My instant thought was, “Oh, my God.” I honestly was a bit angry with God.
I’ve had to do a lot of personal work to get beyond missing that presence of my dad and wanting him to be proud and wanting to accomplish certain things. That’s been a lot for me. To think that they would potentially be catapulted into this same space was extremely devastating and challenging for me.
I just remember my instant thought was, “How much time do I have? How much time do I have?” I didn’t know anyone with bladder cancer. I’m a bit of a fluke. The doctors would say, “You’re a unicorn. You’re checking all the boxes, [by] trying to live a healthy lifestyle. Yet here we are. You’ve never smoked. You’re not an older white male, yet here we are.”
It was extremely devastating for me because I remember thinking that my children are going to grow up without their mom. That was a space that I’ve always not wanted to be in because I hated having to experience it myself.
Telling your children about the diagnosis
I’m trying to think how we even came to how we were going to share, because I didn’t want them to worry. We decided not to share much. Initially, we weren’t going to share really much at all because my first appointment with the other urologist, it sounded like, “You’ll still keep your hair. Your hair may thin a little.”
I was planning to continue to work. I was really trying to kind of maintain that normalcy. Fast-forward [to] when we met with the hematologist. He was like, “Oh, no, boo-boo, you’re gonna lose all your hair,” which was extremely devastating. “You’re going to have chemotherapy or infusions every other week. After the second infusion, it’ll be extremely challenging for you.”
Hearing all those things made me say, “Okay, we probably need to share something.” My husband honestly did all the talking when we shared. I’m extremely emotional, and I’m a big crybaby. He was the one that shared. We didn’t discuss details of staging. We weren’t intending to, but the oldest one, who was 20, was instantly like, “Okay, what stage is it?”
We just talked as a family. This is the deal. This is what’s going on, but we will get through this. Like I said, he did all the talking because I would have been a blubbering mess. He did all the talking, and I honestly think that was the best part of it, that he was the one that kind of put a positive spin on it all for them.
How did your urologist describe the results to you?
It was a very short appointment. I remember him asking me if I had any questions, but I was like, “Yeah, I got all the questions, but I don’t know what questions to ask.” I don’t know if he was just struck by the amount of emotion that I was expressing.
It was just more of a, “I’m going to connect you to someone else that is going to help you better than I can.” I remember thinking, “Well, dang.” I was just so overwhelmed. I didn’t know what questions to ask. I had a ton of questions, but I really didn’t even know.
Of course, some of the main questions were, “How serious is this?” There was not any discussion at that time of treatment. No discussion about any of that. I didn’t really get into all of that discussion until I met with my other urologist.
Receiving treatment at Duke Raleigh Hospital
All of my treatments after that point were primarily through Duke Hospital in Raleigh, North Carolina. Honestly, that was probably one of the best decisions for me. It’s great because the treatment was relatively close to us, so we didn’t have to travel far.
After that diagnosis, there was a slew of appointments. I can’t even tell you how many appointments. Every day, it felt like I was at another appointment, and it was a whirlwind of appointments.
That surprised me because I had to go to different doctors for them to check my heart, to check my liver, to check all these different organs. The hematologist knew what my body was about to have to undergo. They were trying to make sure that my organs were going to be able to withstand all of these really harsh treatments that I was about to start taking.
Most of my treatments were at Duke Raleigh. The hematologist and urologist worked hand in hand to enlighten us on what was about to happen.
Ebony with part of her team at Duke Raleigh.
Receiving a binder of information to prepare you
My first appointment with the urologist was accompanied with this huge binder, this 3-inch binder of tons of information, including a section on hospice care.
All of it was about the medications that I was going to have to take, the potential types of urinary diversion, you name it. That binder was the gospel for me for the next several months. [It was] a little daunting to get that binder. Then there was another little pamphlet that had pictures of people, I guess, that had bladder cancer.
I remember thinking on the cover of that little pamphlet, “None of the people that have been diagnosed with this look like me.” There may have been one woman on the picture, but she wasn’t African American. Everyone on that pamphlet looked older and not like me, but I was like, “Okay, here we go.”
Was the pamphlet comforting, or what did you feel looking at it?
I looked at the different types of urinary diversions when I opened it, and I remember thinking, “Wait a minute.” I was actually kind of vain at the time. I was like, “Wait a minute. What is this? Does this mean I’m going to be left with a bag outside of my body? Does this mean I’m going to lose my hair?”
I was physically trying to think through what the impact was going to be. I remember talking to the urologist initially, and he said, “This is the new and improved one.” I remember him saying, “Your hair will likely thin,” and so I remember thinking, “Okay, I can manage that because I had a ton of hair.”
I was okay. Then right after his appointment, I had the appointment with the hematologist [the] same day. The hematologist was like, “You’re going to lose all of your hair.”
I just was devastated at the thought of, ‘How am I going to manage not having hair?’
I went from, “Okay, I think I can manage this,” to, “Like all of it, all of it?” He’s like, “Yeah, no, without a doubt, you’re going to lose all of your hair.” Again, I [was] just devastated, bawling in the doctor’s office. [I] can’t even read the material that they’re handing to me.
We didn’t tell the boys at that point. It wasn’t until for sure we knew I’m going to be physically impacted. I’m not going to be able to hide it per se. That’s when we decided to share with them.
Hair Loss
The importance of hair as a Black woman
As a black woman, actually it takes a long time for our hair to get to the lengths that we enjoy. My crown, as I call it. There’s a lot of pride and joy in my hair. Actually, for about 7 or 8 years, I had decided to become natural, so not having any chemical products in my hair, not having any relaxers to relax my curl pattern.
I had really worked hard to grow those chemicals out of my hair. [I would] keep cutting the hair and just growing out for it to be at its natural state. To get to this point, where it’s 8 years in the game of being what we call ourselves naturalistas, to find out now it’s all going to come out. Like, what?
Then I’m thinking to myself, “Is it going to grow back?” You hear stories, and you see people where it does grow back. I was like, “What does that mean for me? Is it really going to grow back?”
I just was devastated at the thought of, “How am I going to manage not having hair?” That was honestly the tip of all of the side effects that were going to come from it, but the initial thought was no hair. I’ve worked really hard to become a naturalista and take pride in this crown that I wear, and here we are.
It was incredibly devastating.
Can you describe the impacts with lack of control with identity?
I was really disappointed when I found out. I have a bit of a social media presence, too. I like to be out there and sharing with people how they can live as their best selves, how to motivate people, [and how to] encourage people.
I’m like, “Now everybody’s going to know. It’s not going to be my own personal battle, because I refuse to let this stop me from still being an encouraging force to people in my circle.”
I remember thinking, “Lord, I don’t know why you’ve given me this, but I’m going to choose to believe that it’s because you trust that I can still be a light despite whatever is going on.”
I refused. I’m not going to allow this to minimize my presence on social media. I’m not going to allow this to minimize the peace that I bring in my home. I’m not going to allow this to be that.
I remember talking to one of my sorority sisters, and she’s a breast cancer survivor. She suggested to me, “Ebony, I just challenge you, maybe you want to go ahead and cut it, because at least that part you have control over.”
I never had my hair in a short style, and I was like, “You know what? I think I will.” My first chemo infusion was December 22nd, and my birthday’s January 10th. My second infusion was going to be January 5th. I remember the hematologist saying, “After your second infusion is when your hair will likely come out.”
I remember thinking, “I’m going to be optimistic. It’s not going to happen for me in my second infusion.” I can’t remember the actual date, but between December 22nd and January 5th, I was like, “I’m getting my hair cut.”
I remember texting a close friend who owns a salon and was like, “Hey, I need you to cut my hair.” She was like, “What? You sure?” At the time, I didn’t tell her what was going on. When I actually made it for the appointment, I let her know, and she was like, “Oh my God, are you sure? We don’t have to cut it. We can just wait and see. Maybe it’ll just thin.”
I was like, “No, I’m ready to cut it.” It was a very short style. That was one of the best feelings that I had. I remember thinking that I was going to be emotional during the cut, but I wasn’t, because I remember thinking, “I’m going to enjoy this, because based on what the doctor is saying, I’m not going to be able to enjoy it for long.”
I remember getting it cut and coming home that night, and my husband started crying because he was like, “You’re really having to do this. Here we go. But we’ve got this. We’ve got this. We’re going to conquer the day.”
That was something he constantly said to me: “Conquer the day.” I’m a creature of habit. I will look far in the future and think, “Oh, but what if, what if, what if?” He said, “Uh-uh, conquer the day. Stay like a hitch. We’re going to stay right here, between right here and here. We’re just going to conquer the day.”
Getting my hair cut was huge for me in controlling the process. I want to say for my birthday, I still had some hair. I used to wear a scarf around my head just to kind of protect my boys from seeing. Literally every day, I would wake up, [and] there would be hair on the scarf [and] hair on the pillow. It got to the point where I was like, “I’ll just shave it.” Because, again, that was me exercising my control in this situation.
Your husband shaved your head
Yeah, he did. Honestly, that was the best. I remember him thinking, “We can take you somewhere else and get a cut.” I was like, “No.” I thought I was going to be emotional, honestly, in that phase. But I wasn’t. It was honestly freeing because I didn’t have to worry.
Ebony decided to shave her head.
It was coming out in handfuls. It also was denaturing my curl pattern, so my hair was sticking up on the side of my head. It was just not the most attractive. When he agreed to shave it, it was liberating because I knew, at least now, I’m not going to have to deal with seeing it come out. Seeing it come out was the worst part.
Once it was all shaved, I still wore a scarf around my head initially. Then we had a meeting downstairs at the kitchen table. My husband told the boys, “I just wanted to let you know we shaved your mom’s head and wanted to share with you what it looks like.”
We showed the boys. I took the scarf off, and I wondered “What are they going to think?” My oldest son was like, “Wakanda forever,” which was the best feeling, because I was like, “You know what? Yes. Wakanda forever.”
What did that moment mean to you?
I totally was thinking, “I’ve lost something. I’ve lost a lot, and my boys are going to look at me like I look abnormal.” But when my oldest was like, “Wakanda forever,” I honestly remember thinking [about] the movie. It took me back to the movie and how the women whose heads were shaved look like queens. [They] looked like royalty.
There was nothing that I saw in them that was a loss. He probably doesn’t realize it, but when he said that to me, it equated to me like, “Honey, there is nothing here that is a loss. You are still a queen regardless.” Like I said, he probably doesn’t realize it, but for me, that was reassurance that that’s what he saw.
Treatment and Recovery
What was your chemo regimen?
I would go every 2 weeks, every Wednesday, and I had 4 different drugs. The acronym was MVAC, and it was 4 different drugs. I would go in for my blood work at like 8 in the morning, and then they would administer the chemo.
None of it was administered at the same time. There was a series. I can’t remember the order specifically, but there were some drugs that were administered. One of them people affectionately call it the “Red Devil,” and I was like, “Nah, that’s the blood of Jesus.” Anyway, I would try to be very optimistic when I went in there.
When I would see the nurses, they were all suited up with things to protect them from the same chemo, the meds that they’re giving me. I’m like, “This isn’t a good sign.” They would start administering the chemo, [along] with some of the meds.
There were 2 meds that were known to cause neuropathy, and so we would ice my hands and feet while the med was being administered, which was a bit challenging as well because it’s cold. I would sit with my hands in ice and my feet in ice for as long as I could bear it, then take it out for a few minutes, and then submerge everything again for as long as I could while those meds were being administered.
Generally, I would hope for a window seat because I was always surprised at how many people were undergoing care in the infusion center. All of it was in the same place, all still in Duke Raleigh. I would go upstairs to get my blood work [and] go upstairs to get a checkup.
They would tell me about how my blood work was looking, and then I would go back downstairs for the infusions. I would pretty much be there all day until like 3 or 4 in the afternoon. Some gracious souls would bring us food.
One of my close friends set up a meal train for us. People had signed up, and they knew every Wednesday she’s going to have her infusions. People would bring food for dinner on Wednesday nights. That was every other Wednesday for 6 infusions.
It ended up being 12 weeks. From the beginning of December — so through Christmas, my anniversary, my birthday, Valentine’s, all these big markers for me, I was having to go through all of these treatments — until the beginning of March.
How did your doctor describe the treatment regimen to you?
The urologist talked mostly about what the entire treatment would look like. The urologist talked beginning to end. The hematologist specifically talked about my chemo. I knew that there would be some type of surgery at the end of all this.
Actually, what they told me was, “You’ll probably do 2 to 4 infusions.” On the day of my second infusion, my chemo doctor was like, “You’re doing really well with this. We’ll actually go ahead and continue, and you’ll have 6 infusions.”
I came in thinking, “I’m halfway. I’m going to get through today. That’s going to be halfway.” Then he was like, “No, boo-boo, we’re going to sign you up for 4 more.” That was another emotional day because I remember thinking, “Wait a minute. You’re telling me I’m doing well?”
He was like, “Well, yeah, that means your body is tolerating this. We are intending to zap this cancer as much as possible before you have surgery.” Again, that was devastating because I was just like, “I thought we were doing good. We’re close to the finish.”
What the urologist explained to me was that once I was done with my infusion, then we would have to have a surgical procedure. That surgical procedure would absolutely mean the removal of my bladder because of the type of cancer that I had.
Once it was very clear that the tumor had gotten to the muscle wall of my bladder, the bladder has to come out. There’s potential spread to other organs. We were very concerned about that. I had to do additional scans to see how far potentially it spread.
Those additional scans confirmed that it only spread to lymph nodes in the immediate area. At that time, the urologist thought we may actually have to proceed with a hysterectomy in addition to bladder removal, in addition to whatever urinary diversion they would have to do.
I remember thinking, “Can’t we get a bladder? Like, can I get something donated from somebody? Surely, I don’t have to lose [it].” It seems pretty extreme.
I remember another breast cancer survivor telling me, “Ebony, at least it’s not breast cancer.” I remember thinking, “Girlfriend, no shade on whatever else you went through, but I’m about to lose a bladder. I’m about to potentially have to wear a bag outside of my body.” We don’t even know yet what the outcome is going to be, and I can make a choice.
The other concern I had with my doctor [was], “Wait a minute, how many women have you done the surgery on? I know you typically do this on older white men, but how many have you done [like] this? I need to see statistics.” The engineer was coming out in me at that point, and I was very concerned because I was reading, Googling.
I asked the doctor, “Is there a support group that I can connect with?” The nurse said, “There is, but honestly, Ebony, the people that are going to be in that support group that’s through this medical center are likely not going to look like you. You’re not going to be able to relate to [them].”
I was like, “Another day, another devastating assessment.” But then my husband was like, “Chase on the case.” I never even thought about this because I was so emotionally triggered. He looked on social media and found a group for me of women with bladder cancer, which was huge.
While there are no doctors or medical professionals in there, it was just comforting to me to know there are other women out there. It was a very small group, but there were other women out there. I can go look at their posts [and] see what treatment they chose.
There were 3 different types, 3 different potential urinary diversion surgeries that I could have. [I was] just trying to figure out what their quality of life was after their surgery. That was a little bit more about what he shared and how we connected the dots on what I wanted to do.
Importance of hearing from people you can relate to
The doctor can say all day, “You’re going to lose your hair, but it’s going to grow back. Your nails are going to turn black, but they’re going to grow back.”
It’s so incredibly helpful to know that there is someone else, a woman like you who’s probably married, who has kids, [and] who’s concerned about the effects of chemotherapy on her reproductive organs.
I wanted to see if people were able to return to their previous level of quality of life. You have a doctor saying, “You’re going to be fine.” Hearing someone else say, “Look at me. Yes, I’m fine. Yes, I can still run. Yes, I can still go to the swimming pool.” That was extremely comforting.
What were your options for removing your bladder?
There were a few options, actually. As far as what science dictates, there are 3 different options. My surgeon made it very clear that he did 2, that there were 2 options.
I could have the bag outside of the body. There’s a more technical term for it, but I can’t remember. In my brain, I was like, “Okay, that’s the option. Bag outside of my body that I would need to empty.”
Then there was an Indiana pouch, which my doctor didn’t do, and then there was the neobladder, which is what I decided to go with. The key thing that he let me know was even if I decided on the neobladder, in the surgery, they would have to determine if my body was the best candidate to undergo specifically the neobladder diversion.
I’m skipping way ahead, but even literally right before the surgery, like a day [or] 2 days before the surgery, I was marked for the procedure that would make me have to wear a bag outside of my body. I had a physical marking on my belly because they actually wanted to see how I sit, like the folds of my tummy, in the case that my intestines weren’t deemed viable.
The neobladder consists of taking a portion of your intestines, your small intestines, and creating a new bladder. If they determined in the middle of surgery that that small portion of my intestines was not viable to be used as a bladder, then that meant that they would have to punt and go back to the bag-outside-of-the-body option.
I would not know until I woke up from surgery what I ended up with. My prayer was neobladder. That was ultimately what I decided to go with, but he also made it very, very clear that the neobladder surgery is incredibly invasive and much more involved and a longer recovery time.
I was like, “Yeah, no, that’s what I want. We’re going to figure this out.” After researching and seeing the image, he also made it very clear that a lot of people, like from surveys, 50-50 will say that their quality of life is back to where it was before the surgery.
Ebony on the day of the surgery.
It’s pretty much split down the board. Some people love the neobladder. Some people love the other diversion (ostomy). I decided to go the neobladder route. That’s an 8-hour surgery because they have to do 3 different things: remove your bladder, take some of your intestines, create a new bladder, and then reconnect everything.
How long was the surgery?
It was 8 hours. It may have been a little bit longer for me. My husband told me recently, that apparently when they do the surgery — I didn’t remember this data point — you’re inverted.
My surgery was a robotic procedure. There are 5 incisions on my belly now to do all of that, and it blows my mind sometimes. I’m like, “That’s all? For all that you just did in my body, 5 small incisions?”
They inverted me, apparently, during the surgery. When I came out of the surgery, I was incredibly swollen. It kind of really concerned my husband. They were like, “That’s normal. She’s just been inverted. Yada, yada, yada.” The surgery itself was between 8 and 9 hours.
Recovering from the surgery
In all the materials [and] that huge binder, it talked about so many things. It talked about the meds that I was taking. I’ll definitely talk about the continence piece, but I was taking so many meds and steroids to circumvent the side effects of the chemo. That was just one thing already.
There were other sections in the binder to talk about what could happen after the surgery. One of those things was you could be hypercontinent [and] lose all ability to control how you use the bathroom. Those were the fears that I had.
Then also [it covered] how it could impact your sexual relationships, your sexual relationship with your spouse. I just remember thinking, “Okay, look, this is a whole lot more than what I initially bargained for.”
I would find myself stressing for what the outcome would be. That’s when my husband would come back and say, “Right here. We’re going to conquer the day. We’re just going to conquer the day.”
I was extremely concerned about [if] I [was] going to have to wear products to manage through the day. I work in a manufacturing facility. I was wondering how my clothes are going to fit. Am I going to have to have additional things to use the bathroom? Am I going to have to change what I wear? I usually would wear fitted things, and so now am I going to have to have this bag that’s going to dictate [that]? Am I still going to be what I thought was attractive? You name it. I thought all those thoughts.
Recovery in terms of sexual health
Some of my biggest fears started with the chemo because I also started experiencing hot flashes. There were instructions as far as after you have chemotherapy to not engage in sexual relationship because of the chemo and potentially endangering your spouse or whatever.
I remember thinking, “As a woman, am I going to be able to help you meet your needs? Are you going to be disappointed still being married to me? Because now this ‘for better or worse’ is looking a whole lot worse than when we started 16 years ago.”
He reassures me even now, “Bae, the same guy that helped you through this cancer is going to be with us as we work through getting you back to where you feel comfortable with different things.” He doesn’t pressure me. It’s just more of a, “I’m patient. I’m here.” That’s been extremely comforting as I try to figure out how to get my body to work.
How long has it been since the surgery?
The surgery was March 30th. I was in the hospital until April 27th. I came home for 4 days and then was back in the hospital with sepsis for another week and a half. That was extremely challenging.
I knew the doctor said the recovery period would be difficult. Even still, when I came home, I still had bags hanging from my kidneys because we were trying to figure out my kidney. My right kidney decided, “I don’t know if I want to work right.” That was a bit challenging.
I had a nephrostomy tube and an external bag that I would wear to help drain urine out of my right kidney. That was all the way until June 19th. I wasn’t feeling very attractive. [I] wasn’t feeling like my best person. That [was] on top of a lot of bone pain from the chemotherapy.
My husband tried his best. He was home with me the entire time. He took leave from his job. Literally from December until June, we didn’t go back. Both of us went back to work the week of Independence Day. He was with me the entire time.
It was funny because when we went back to work, our sons were like, “Wait, you’re going back to work?” It was incredibly comforting to me to be able to be home when they came home from school. Even though I wasn’t feeling up to cooking, [it was comforting] for us to still eat dinners as family when I felt able to do so. It’s been a lot.
My husband kept encouraging me to try to stay active as much as possible. That activity sometimes was just walking. Literally, when I came home from the hospital, it was walking for 10 minutes, walking around the house with the physical therapist, just to halfway get my mobility back after atrophy from being in the hospital for so long and having issues with my heart also while I was in the hospital.
He’s been extremely patient from a standpoint of, “I’m just here with you to figure it all out.” That’s been incredibly reassuring.
Finding Support and Advice
Importance of finding other patients who you have more in common with
Looking in that social media group, [I was] trying to just scroll and see who I can relate to. Even still, as I was scrolling, while there were women in the group, because it’s a group for women with bladder cancer, there weren’t any African American women. I hadn’t found one until on the day of my first chemotherapy infusion.
I have some sorority sisters that actually went and found the representative colors for bladder cancer. I didn’t even know there was a ribbon for bladder cancer. I knew about the pink ribbon for breast cancer. I didn’t even think that there are ribbons for different cancers.
They had Googled, I guess, on the side and found out what the colors were: blue, gold, and a royal purple. They knew that I was going in for my first infusion. In our separate chat on the day of my infusion, they start posting pictures. They all have on some version of blue, gold, and purple.
I’m like, “I don’t understand,” because our college colors are blue and gold. I was like, “I’m not getting it. I don’t understand.” It wasn’t until someone said, “We’ve got on our colors for you, Ebony,” and then they sent the ribbon.
I was like, “Oh my gosh.” I was so flattered, and I was just sharing with them, “Hey, y’all, this is my first infusion day, if y’all can be in prayer.” Not only were they in prayer; they all decided to be on a united front and share that with me.
I collected all of their pictures, put them in a collage, and shared it in this social media group with the women to say, “I’m just so grateful for my sorority sisters, who are standing in agreement with me today.”
There’s a hand gesture that we use, too, to indicate our sorority. From that picture LaSonya found, [it[ turns out LaSonya is part of the same sorority. [She] was like, “OMG, hi, sorority sister. We’re here together.”
That was so encouraging because I was looking for someone that looked like me. I’d scoured Instagram, trying to find different hashtags, [but I] hadn’t found anything or anyone that looked like me that was fighting and winning at bladder cancer. To find her was huge for me, because it’s like, “Yes, we can absolutely identify on even more levels.”
What does having LaSonya mean in your life?
It’s so hard. Number one, nobody wants to get diagnosed. No one wants to hear the dreaded C, right? Of course, not to downplay breast cancer. You see a lot of stories. I’ve unfortunately had a lot of friends that have been diagnosed with breast cancer.
Because more friends have been diagnosed with breast cancer, you instantly have someone that you can think of that you can say, “Hey, here’s my friend such-and-such. If you have any questions or any parts you want to relate to, she’s here. You can connect with her.”
With bladder cancer, I couldn’t find one soul that I could say, “Hey, what are you doing? How are you feeling about losing your hair? Are you going to wear a wig?” Just all that. Honestly, it wasn’t like there were that many different questions that I would ask her.
It just was an instant, “You know everything that I’m feeling. You can relate specifically to the loss of hair. You can relate specifically to darkening complexions.” [The chemotherapy] also made certain parts of my skin darker
“You can relate specifically to all those things. You’re taking likely the same medications that I’m taking.” She was actually like a month ahead of me in her journey, so I was watching her as she was going through her journey and how optimistic she still was. I was like, “Okay, you can do this, Ebony. You can do this.” That was huge for me.
Becoming a light for others
I want people to know you’re not the only one. I have fought through this. Unfortunately, there are going to be people out there — I mean, I had people coming up to me and telling me, “Some of the side effects of chemotherapy are your food is going to taste like metals. You’re not going to want to do yada, yada, yada.”
Then I said, “How do you know this?” “My husband died from it.” Thanks, I don’t want to hear those stories. I want to be the evidence, the example. I try to tell people, “I do consider myself a miracle, and if you’re ever looking for the evidence to help encourage you, let me be your evidence. Your current-day 2022 evidence that you can fight this and win.”
Knowledge and advice from other women
One of the doctors in the practice, I remember reaching out to her and saying, “Wait a minute. He’s done this surgery on men. Am I going to be good?” She’s like, “Oh, absolutely.” She actually ended up giving me another name of another doctor within Duke that I could also reach out to.
I did not end up reaching out to the other doctor because the practice really comforted me. This practice, honestly, has spoiled me. I don’t even know if I want to go back to a regular doctor because they seem to be so genuinely concerned about my welfare [and] genuinely wanting to help me.
One of the things that comes with when you have the neobladder is self-catheterization. Everyone’s outcome may be different. Some people may only have to catheterize at night. Some people may have to self-catheterize during the day.
I remember not even knowing that my urine came out of a different hole. I didn’t know. Having the nurse share with me, “I will help you find your urethra. You can try it at first. Here’s the DVD. You can look this up.”
I remember propping, being in the bathroom for the first time and having the laptop with the DVD loaded, trying to get a mirror, trying to get this catheter, and trying to figure out where to stick it. I felt like I’d struck gold when I finally was able to empty my bladder with this catheter.
It was helpful because she talked with me. I said, “Are there any things that I can do prior to surgery to help in this recovery?” She talked about strengthening my pelvic floor by doing the Kegel exercises. I hadn’t heard anything about Kegel exercises since I was pregnant like 13 years ago. I was like, “Okay, that I can do.”
Then she talked to me about finding my urethra prior to the surgery, because likely after the surgery, I would be in pain, which was another great piece. I kept putting it off. I literally found my urethra maybe 2 days before surgery. I was like, “Okay, you’re a grown woman. You’ve done things. You’ve birthed 3 children. You should be able to do this.” I had to psych myself up [and] have the pep talk.
It was very helpful to have women in the practice that could help me work through that. I said that I was marked for the urostomy bag. We even talked about different types of panties or undergarments, bathing suits, just different things that would make me feel comfortable with my quality of life if that was the route that we ended up with.
You don’t know, again, until you wake up out of surgery. [It was great] having those women present to help me find my urethra [and] to help me work through those emotions of what happens if I do have to have a hysterectomy, which I didn’t. What happens if? All the ifs. That was extremely helpful.
Advice for dealing with a neobladder
Know that you don’t have to do everything. As women, we’re used to doing everything. Let your body heal. Don’t be in a hurry to do all the things. Make sure that you stay active, even on days that you don’t want to.
Have an accountability partner that will help you stay active. Even if it’s walking 10 minutes a day, and then, in the following week, you’re walking 12 minutes and 15 minutes. Having someone meet you to say, “Okay, girlfriend, let’s go walk.” That activity was huge for me, even if nothing more than just getting out.
I had a playlist that was also encouraging to me. On those days that were rough for me, I would put that playlist on, and that would typically help me feel better. Those were some of the main things.
From a vain sense, because I keep talking about vanity, I had several loose dresses for me because I had that extra bag. I remember one of the first things when I went home from the hospital was, because I wasn’t expecting to have this extra bag, but I just wanted to go to Target. I remember not having clothes. Some of my dresses were shorter prior to, and so I needed a midi length that was loose.
I remember going to Walmart and just having dresses to wear where I still felt pretty. I also had comfortable shoes as well. My husband [and I] ordered some extra sneakers because despite all of the extra things to try to prevent neuropathy, I still have neuropathy in my feet.
Initially, I just needed comfortable sneakers to be able to get around. Not going overboard and buying a ton of stuff, but having a couple of things where you still feel cute. It’s funny because after you have a baby, they tell you you’re not going to lose all the weight immediately, and they tell you to have comfy clothing.
That, for me, was extremely helpful, and having those couple dresses to be able to [go] if I just wanted to ride to Walmart, because that’s literally what we were doing half the time.
Then when I built up the stamina to walk a little more, literally, we would walk to Target of all places, and then just walk through the aisles with the buggy to help stabilize me. My youngest son was like, “Why Target?” I was like, “Everybody loves Target.”
You got your popcorn. You got your Starbucks. You got just a normalcy. I wouldn’t even buy anything most days. Just walking around, feeling somewhat normal, was helpful for me.
Transitioning to the neobladder
There are tons of concerns because you could potentially have a UTI. I guess we’re highly susceptible to UTIs. I had issues with my kidneys. There were a lot of complications with that, but the biggest thing as far as recovery was training my neobladder.
Now you’ve got this neobladder. It can only hold so much, and so you have to train it. There was a schedule that was also in that binder that was shared with me on how to empty [it]. I would have to empty my bladder on a certain cadence.
I remember the first time I tried to do it, it took me a minute to kind of get the sensation down to understand how I actually empty it. It’s hard to describe, but I remember thinking, “Okay, Kegel exercise. Kegel, okay.”
It was the relaxation. Doing the exercise itself and relaxing the muscle is what helped me. That’s how I would use the bathroom. Anyway, there was a schedule for that. Every 2 or 3 hours, I would initially be trying to empty my bladder.
Then that period of time extended overnight. I would try to always catheter before I went to bed. I would also wear a pad when I went to sleep because I was nervous about wetting the bed. I don’t have to do that now. I do wake up in the middle of the night still to empty my bladder. Sometimes that includes a catheter at night just because it takes me time to empty the bladder.
Even now, sometimes, I’m a bit paranoid if I go to a public restroom, even at work. This is something I’m still working through. When I go to the bathroom at work, I have so many meetings that are back to back.
I can go in a stall, and another woman can come in the stall. She can empty her bladder and be done. Literally, I’m in there trying to do exercises to empty my bladder. I always wonder, “Is the person next to me thinking, ‘What’s going on over there?'” I’m still working through that, but I’m comforted in knowing that I’m alive. I need not worry about what someone else is thinking is going on in my stall.
I’m grappling with, “Do I want to tell my manager?” Sometimes I may be late for a meeting because I’m emptying my bladder. I haven’t had that conversation because I’m trying to work through that.
Sometimes, because there are meetings after meetings after meetings, I don’t have [time]. I have to literally make the time to go empty my bladder. That’s a bit of a challenge for me because if it gets too full, there’s potential for infection and all the things. I’m still working through that.
When I’m home, it’s easy. I can just go to the bathroom [and] not worry about how long I’m in there emptying my bladder. I still, straight up, have a hard time finding my urethra without a mirror. The nurse reassured me eventually it’ll be like a tampon. It’ll be where you can find it without even looking.
I’m looking forward to that day, because honestly, it is a challenge. It’s things that you don’t think about. When I travel and I’m in the hotel room — this may be TMI. I don’t know. When I’m in the bathroom at home, I have a self-standing mirror that will help me find what I need to find so that I can fully empty my bladder.
When you travel, you don’t typically have a self-standing mirror, so you’re either trying to prop your leg up or trying to find your phone, but you don’t have that many hands. You literally need a third hand to use the catheter, have something to locate the catheter, and then aim. It’s a challenge, but I’m working through that, and I am just conquering the day.
Reflections
How important is self-advocacy?
At the end of the day, no one knows your body like you do. In hindsight, I wish I’d possibly gone somewhere else sooner. I just challenge everyone out there. At the end of the day, doctors are doctors, but they are practicing medicine. They’re practicing, so they will not know everything. You know your body more than anyone else.
All I can challenge anyone out there that’s debating or [wondering], “Is there something wrong? Should I do more?” Yes, you absolutely should. Don’t debate. Don’t delay. Don’t let months go by before you inquire or search more.
Again, always remember that you know your body more than anyone else. Don’t be fearful of what the outcome can be, because the sooner you find whatever is going on, the sooner you can start treatment, the sooner you can do the life-saving work so that you can be around for those that love you.
Healthcare system and the experiences of African Americans
It’s unfortunate that this is the case. I know for African Americans, we don’t see a lot of ourselves in a positive light. We don’t see us conquering things on a basis. What we do see is negative outcomes.
We see a lot of loss or, “It’s just the way it is. This is just the way it’s going to be [and] the way it’s always been. No one’s going to help you. No one really cares about you. You can be lost, and people would care less.” If you can’t afford something, you’re doomed to whatever you can piece together.
When you’ve seen that for generations — sometimes, [for] people who are not African American, it’s hard to relate. But when all you see is something negative, when all you see is, “This is the outcome. This is just the way it’s supposed to be,” it is extremely hard.
Again, I know it may not make sense. It’s extremely hard, though, for you to envision that someone does care. It’s extremely hard for you to envision that you can win. You can beat this. You can succeed. This is in every area.
I think what the medical industry can do is to put more faces in the forefront of people who are doing well, who are receiving the treatment, who have found their way, [and] who are winners.
Put people out there not only from people who have won the fight, but put people out there who are open and willing to help people win the fight. We need to see that the system cares about us. We need to see that, because for decades, we’ve seen so many systems that don’t.
Do you still question why this happened to you?
No. It’s crazy because it’s just been a year. It honestly hasn’t even been a year since the diagnosis. I keep like looking at my watch like, “Okay, no, it hasn’t even been a year. What a year it’s been.”
Maybe it’s Pollyanna-ish, but my belief is that God trusted me to go through this and be positive regardless. To go through this and show people how to overcome in the face of death. To go through this and show people that I did and they can, too.
There are times when I’m like, “I don’t like certain things.” I don’t like the whole catheter thing. I don’t like the aches in my body. But again, I remind myself, “Grace, girl. It’s not even been a year.”
I’ve had so many people message me since I shared on social media last December. They’ve either shared that they’ve received a diagnosis, not necessarily bladder cancer, but they’ve received another cancer diagnosis. They’ve been motivated by what I’ve shared.
I remember thinking when I was going through, “Lord, just get me through the surgery. Let me just get through.” It seemed like it was so far between November 29th and March 30th. It seems so far, and I still had no idea all the craziness that was going to happen after March 30th.
I just was like, “Just get me through to the end.” I thought the end was going to be, “Let’s get through the surgery, and you’re going to be good.” I had a friend share with me recently, “Ebony, maybe that was just the beginning, like the beginning of helping other people [and] the beginning of changing lives. The beginning.”
Again, I wanted to be like, “Whoa, okay, let me live my life now.” I’m looking at it now more so like, “Okay. God, me and you, we’re going to share.” I’m one that’s open to sharing. I could be wrong, but sometimes I think that he thought he could trust me to share the journey and be an encouragement to others.
What is your last message to readers?
I debated over how much I wanted to share on Instagram, to be honest, because I was like, “That’s a little bit open. People can find anything.” I remember thinking, “I couldn’t find anyone when I was looking. I’m searching all the hashtags, [but I] couldn’t find anyone.”
In general, what I would share with people is I know we have a lot of things that we go through in life. I used to think my weeks were rough prior to this, and I’m like, “Psh, that ain’t nothing compared. You’ve been there, done that.”
Anyway, I think it’s important for people to recognize that whatever they’re going through — it might not be a cancer battle. It could be a divorce, it could be depression, it could be job loss, layoff, or issues with your kids. It can be so many things.
Whatever you’re going through, you don’t have to put everything on social media, but know that social media could be a tool to help change the life of someone that you don’t even know just because you were willing to be transparent enough to say, “Hey, I’m making it through this, and I believe you can, too.”
Whatever it is, whatever you have going on, if you can, share a bit of it. I know people say social media is fake or it’s not the real deal, but I think that there are people out there that if we continue to share the real deal and share how we’re making it, it can help others.
I truly do believe that’s why we’re here: to help each other and not just kind of live in a silo. If there was anything I would share, that would be to just know that you have a voice, you have a light, and to let your light shine because it will absolutely help someone else.
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.
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.
