Alison’s Stage 4 Triple-Positive Metastatic Breast Cancer Story
Alison shares her stage 4 triple-positive breast cancer story. She was diagnosed at just 34 years old after finding a lump under her right arm and breast area. She details undergoing chemotherapy, mastectomy, radiation, and targeted therapy.
In her story, Alison also highlights how she dealt with 2 relapses, how she parented with cancer, the impact of the diagnosis on her relationship with her spouse, and the support that helped her most.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
As much as you can, try to take it one day at a time. It can feel really overwhelming if you try to look at the whole picture. If you can keep focused on what’s going on today, it’s a lot more manageable.
Something else that’s helpful for me is journaling. I write about things that have worked out and things I’m thankful for. That helps me stay grateful in hard times.
Alison R.
Diagnosis
Can you talk about your first sign that something was wrong?
We had moved from Nebraska to California, but I was back home with my kids visiting family. I felt a lump under my arm. My mom is a nurse, so I had her feel it. She asked if I had anything on my breast. We started looking, and sure enough, I felt a long, flat spot on my right breast.
She said it was probably nothing but suggested I go ahead and check with my doctor when I got home. I was visiting for about a week, so when I got home, I went and saw my OB.
She said, ‘You’re young. It’s probably nothing, but we’ll check it out.’
We did an ultrasound first because I was breastfeeding and couldn’t do a mammogram. We did an MRI next. Then we did the breast and lymph node biopsy.
What was the biopsy like?
They were fine-needle biopsies, and it was an interventional radiologist who did them. They kept saying that the biopsies weren’t going to be bad, but it was actually more painful than I expected.
The one in my breast wasn’t that bad, but the one in my armpit (the lymph node biopsy) hurt. They hit a nerve the first time.
I still have some numbness in my ring and pinky finger from that. Under my arm was sore, and I had more swelling than I expected. The breast biopsy wasn’t a big deal.
How did you receive your diagnosis?
The doctor called and said they had my results, if I wanted to go ahead and come in. She told me it was breast cancer in the breast and the lymph nodes. My husband left work to head there. It was just me and my 18-month-old daughter when she told me.
I realized then that I was prepared for it to be breast cancer, but I wasn’t prepared for it to have spread to the lymph nodes.
I was a little bit shocked. I took in the information, and I was crying. My daughter was on my lap, and she was like, ‘Be happy, Mommy.’
About that time, my husband walked in. I let the doctor tell him. We hadn’t really told anyone that I was getting tested for anything when I got the diagnosis.
We wanted to gather all the information and handle our own emotions before taking on the emotions of others as well. I called my parents on the way home.
A friend of ours takes all our family photos. Her mom died of ovarian cancer and had the BRCA gene. She’s had a prophylactic mastectomy.
I knew that even if it wasn’t cancer, there was a chance they’d have to remove it. Before I got the diagnosis, I had asked her to take boudoir photos for me.
I just wanted to capture my body how it was even if it wasn’t cancer because I knew it could still change it.
I don’t know why I thought of it at the time. It was for my husband. Then I found out it was really for me, too. I’m really thankful I did that.
Since then, I’ve had a mastectomy, but I’ve never had reconstruction, so I’m really glad I have those. Because of her history, I think it was special for her to do that with me.
1st-Line Treatment
What was your treatment plan?
I had a lot of testing, and we first met with the surgeon. He was friends with the oncologist. He messaged her when she was on vacation, and she called me. That was amazing.
They wanted to do surgery, but because of the size, they decided to go ahead and do chemo first to shrink it before surgery.
You underwent genetic testing
My HER2 test results came back equivocal 3 times, so it felt like a long time waiting in between getting diagnosed and starting treatment.
When we finally found out I was triple positive, we could start. That was about a month later.
What was your first chemo regimen?
I started with TCHP chemotherapy regimen — taxotere, carboplatin, Herceptin, and Perjeta. The first time I went in, it was a really long day. I got all of the pre-meds and chemo drugs on the same day. Then, 3 weeks later, you get the next round of them. I did 6 rounds.
After the first round, I ended up with a neutropenic fever. My white count got really low. I ended up in the hospital. Everyone who came in had to be gloved up. My husband thought I was going to die. I didn’t have that fear at the time, but he did.
After that, my white count came up, and we continued, but I took Neulasta after infusions. I used Benadryl, Claritin, and ibuprofen each time I got a shot, and that prevented the dreaded bone pain.
I got mouth sores, and those were not fun. I tried the Magic Mouthwash. I tried a steroid paste. I tried viscous lidocaine.
The doctor started me on Acyclovir and I didn’t get mouth sores after that.
I lost my hair. I shaved my hair before chemo. I had my kids do it because I wanted them to have some control, and I figured it would make more sense to them. I went ahead and shaved it so I could donate it, because they wanted it pre-chemo. Plus, it made more sense to my kids.
My taste buds would be okay for a couple of days, then things would start to taste funny. By the time it started to feel better, it would be time to start the next treatment.
I had fatigue. I didn’t ever get nauseous really. They managed that well, and for the most part, I think my body tolerated the chemo pretty well, too.
I would do labs before doing chemo each round. After the 6 rounds, we did a breast MRI. I didn’t do a PET scan. I had actually begged for PET scans, and nobody would do it. On the breast MRI, it looked like it was pretty much gone.
I did a bilateral mastectomy and right axillary lymph node removal. I had my nipples removed, too. I just wanted to be really sure that I was reducing the chance of having a recurrence.
I was okay with all of that. It did feel weird to lose my nipples, but my doctor said it reduces the chance of recurrence, so I said okay.
To prepare, I was just in a fight mode. I wanted to stick around for my kids. I wanted to be more aggressive.
I have a friend who had been through breast cancer and a cousin in Texas, and they both shared their experiences with me. I talked to a few people who had been through it before.
Right before surgery, I remember feeling nervous about the anesthesia. I didn’t want to wake up during surgery. The nurse navigator reassured me that there were people whose only job was to keep me asleep.
What do you remember of waking up from surgery?
I was in some pain when I woke up. I had a compression garment over my chest. The surgeon wasn’t as empathetic as I would’ve hoped he would be after surgery. I wanted to see my chest after surgery. He was basically just like, “Well, it’s going to look freaky.”
The nurse navigator offered to look with me. I removed the garment, and I remember seeing the staples across my chest. I didn’t feel highly emotional about it or anything.
I had a lot of swelling. The mastectomy wasn’t really painful in my chest, but under my arm was really sore. I had drains in. I had a post-mastectomy bra that had pockets for them. I was nervous to get the drains removed, but it wasn’t as bad as I thought it would be.
What was radiation like?
After recovering from surgery, it was time to start radiation. I met with the radiation oncologist. I went in, and they did an MRI and mapping. They planned out where they were going to radiate.
They would take me in, get everything lined up, walk out, and then radiation itself was so fast.
There was this picture on the wall of a lake scene. I think it was meant to be comforting, but it just made me feel like I was going to die. It wasn’t a terribly scary process, though.
I was mostly just tired. I had quite a bit of fatigue. That lasted a couple of months, even after radiation had ended. I also had some minor burning on my skin in the areas they radiated. I had Silvadene cream for that, though, and that helped.
Switching oncologists
We moved from California back to Nebraska, so I switched oncologists then. It is hard because you develop some trust with your team.
Luckily, my oncologist in California recommended a doctor she was on the ASCO board with. It was orchestrated seamlessly.
You had some more treatment after NED (no evidence of disease)
I had been on Lupron injections to shut down my ovaries since my cancer was ER+. After radiation, I started on Arimidex, which is an aromatase inhibitor to suppress any other estrogen. That’s just a daily pill. I also had to finish up 6 months of Herceptin infusions.
I had gotten my port taken out during my mastectomy because my daughter lays on my chest, and her head would always hit it.
That was okay, though, because Herceptin isn’t as hard on the veins, so I just got it infused through an IV.
How were you feeling after you finished treatment?
I was getting back into my normal life, but that was a time filled with a lot of stress and anxiety for me.
I was seeing my counselor for my anxiety. He asked, “Has your mom or husband talked to you about taking anything for your anxiety?”
I would fixate or obsess over things during that time. I ended up started on a low-dose of Effexor XR, and that has helped tremendously.
Relapses
How did you find out you relapsed?
I felt something in my neck. There was something that felt familiar about it. It felt like what was in my armpit originally. We did an ultrasound and biopsy of that.
I was at the movie theater with my kids. My oncologist’s nurse called, and she said, “I’m so sorry. It is breast cancer.”
That was harder than the original diagnosis. I had the fear that it was going to come back, but I never expected it to happen that soon.
I had known enough to know that stage 4 was so much more serious.
My husband came over, and I said, “Well, I need to go to Houston to get a second opinion. I need to call the doctor.”
He said, “No. What do you want to do right now? The kids are about to walk out of the theater.” We agreed he would take the kids home, I would go for a jog, put the kids to bed that night, and talk after that.
I wanted to get a second opinion at MD Anderson and at Salem Oncology Center because my cousin had seen a doctor down there. He didn’t take insurance, but our cousins and godparents helped us financially so that I could start treatment with him.
What was your chemo like the second time?
I started treatment at Salem Oncology Center. My dad went down with me. We arrived on Sunday, and I went in to get a port put in again. I got wheeled straight into my new doctor’s office.
I did gemcitabine on Day 1. Then I did cisplatin on Days 4 to 6. He would fractionate it. He gave me the full dose over those 3 days. That wasn’t as toxic on my body.
A few days later, I’d get gemcitabine again. Then I’d get 5FU and leucovorin. The next week, I’d get gemcitabine again, and then I’d have a full week off.
I didn’t lose my hair on that regimen.
I had a few mouth sores, but we figured out a dental paste that helped. I used viscous lidocaine. I didn’t have a lot of side effects with this regimen.
After one round of chemo, we did a CT and PET scan. I had a 60% reduction. I stayed for one more round. Then I came back to Nebraska. I found an oncologist in Lincoln who was willing to do it, because it was working. I did a few more rounds with him.
I was in complete remission again after that.
What happened when you went into complete remission?
Once I was in remission, my doctor in Nebraska wanted to stop chemo and start radiation again. My doctor in Houston wanted to keep the chemo going. We had another decision to make.
I met with another oncologist here in Lincoln who happened to know my doctor in Houston. They worked together for 17 years. I made the decision to keep going with chemo. I had to find another local oncologist who would follow the protocol. I found one in Omaha.
He was comfortable working outside of the box. He said because patients aren’t standard, treatment doesn’t always have to be.
Relapse again
I found another tiny lymph node in my neck. I asked to push my trip to Houston for an early scan. The radiologist just thought it was an active lymph node. My doctor said he trusted my fingers, though, and the radiologist did a fine needle biopsy.
It came back positive for cancer. My doctor wanted to switch my protocol. I went for a month of treatment. I did another round of chemo down there.
Then I came back to Nebraska, did another round or 2, and I was in complete remission again.
At that point, I did consolidation radiation. I did that here in Nebraska. They put the thin mask over you, and it hardens.
They’d hook me in, and I would panic a little until I could swallow the first time.
I lost 15 pounds or so during that radiation because it was just on the edge of my esophagus. Eating became difficult, so I was just doing a lot of shakes and stuff, so I think that’s why I lost weight.
I did chemo during radiation. That regimen was Adriamycin, cyclophosphamide and Abraxane. They added Herceptin back in as well.
During radiation, he took me off of Adriamycin and put me on capecitabine instead.
Are you in remission currently?
I was back in remission, but I did a couple of more rounds of chemo again. Then, once I was in remission, I would do a month of chemo on and then a month off. After a year of doing that, I moved to doing 1 month of chemo and 2 months off for a year.
At some point, I hit the lifetime dose of Adriamycin, so they switched that out for Navelbine. I’m currently still doing 1 month of chemo and 2 months off, but I’ve been in remission since August 2017.
If I stay in remission for a while, there might be a point where we spread it out even further or where I don’t have to do chemo at all, but for now, I’m just taking it one step at a time.
Reflections
How have you handled this mentally and emotionally?
I have wonderful friends and family, I see a counselor, that low dose of Effexor XR helps tremendously, and I’m a believer. I pray. I feel like God has given me the strength I need. He’s brought so many people into our lives. He’s been so faithful that I trust even if I do die, He’s taking care of this.
I used to worry about dying as it related to my kids. Then it clicked one day. I can’t worry about not being their mom later. I’m their mom right now.
I have to focus on right now. I accept grace for each day. I can’t know what’s coming, but when I get there, I’ll have grace for that day, too.
I’m not as fearful as I was in the beginning. Now, I feel like I’m able to be realistic about death, but I also know I could be around for a long time. I don’t know which one is my future, but I’m at peace with that now.
How is it being a parent with cancer?
They were so little when I was diagnosed. Now, my son is 8, and my daughter is 6.
About 2 years ago, my daughter’s friend’s mom died from breast cancer. That was the first time my son brought up death and cancer.
He said, “Mom, did she die from her chemo and her cancer?” I had to say, “Yes, she did.” My daughter said, “Mom, are you going to die when I’m a kid?”
I said, “I don’t know. I hope not, but if I do, you have Grandma, your aunts, and your dad, who all love you.” We have those conversations now. We talk about how some people die from cancer, but others don’t.
We’ve also been very sure to use the correct terms in order to not confuse them.
We’ve made it very clear that Mommy has cancer and has chemo. We don’t say, ‘Mommy is sick and needs medicine.’ We’ve made it clear that they don’t have cancer, Daddy doesn’t have cancer, and they can’t get it from Mommy like a cold.
It’s brought us a lot closer. We’ve had to get even clearer in our communication. It’s given us the opportunity to have some really deep and hard conversations.
He’s really good at bringing me back to the moment. One time, I relapsed, and I said something about wanting him to get remarried but would wish it could be me.
He said, “That’s not happening right now. Let’s think about what’s happening right now.” He brings me back to the present moment a lot.
We talked about how it was a hard thing at first to let people help. He still has to work through some of that, and I do, too.
Thankfully, we have insanely generous cousins, who gave us the money to be able to start treatment in Houston. That was hard on my husband because he felt weird accepting that. He wouldn’t even buy himself a candy bar for a while.
When I do treatment in Nebraska, it’s covered by insurance. My doctor here said that insurance could decide at any point to not cover it, but my medical team works really hard.
We have a high deductible, so we just save in other ways and are careful with our money.
Can you talk about hair loss?
You never know if it’s going to bother you, but thankfully it didn’t bother me. Except there were times when I didn’t really know how to dress and be bald.
The second time, when the kids shaved my head, they were really mad. They didn’t want me to lose my hair. They were mostly okay with me going bald.
I did have wigs and hats, though. I posted a picture on social media of me in all the different options. That way, if I saw someone, it wouldn’t be awkward for them.
Then the third time I lost my hair, my kids wanted me to wear the wig. I’d ask if they wanted me to have hair or no hair, and they’d always choose the wig.
I was a little bit bummed when I lost it the second and third time because I looked sick. When I was going through treatment and didn’t lose my hair, it was nice because people didn’t necessarily know.
My hair thins now, but it’s nice to still have it. It’s better than not having it. I’ve gotten to try out all the short hairstyles I was always too scared to try before cancer.
Some of our friends distanced themselves because they didn’t know how to handle it or deal with it. Other people stepped up.
Now, I think everyone is more comfortable with it. People brought meals, care packages, and offered to help with the kids.
One thing that happened when I relapsed was one friend had a bunch of people dress up in superhero shirts and send me pictures. That was nice because it was so encouraging, anyone could do it, and it didn’t cost them anything.
The care packages were always so nice. I got a lot of lotion made for someone going through chemo, scarves, blankets, and so many helpful things.
Even just a text or note of encouragement went such a long way. Having someone just say something is great. I think sometimes people don’t know what to say, so they just don’t, but just say something.
Ask, “How are you today?” I think, “How are you?” is a hard question.
What advice do you have for someone who has just been diagnosed?
As much as you can, try to take it one day at a time. It can feel really overwhelming if you try to look at the whole picture. If you can keep focused on what’s going on today, it’s a lot more manageable.
Something else that’s helpful for me is journaling. I write about things that have worked out and things I’m thankful for. That helps me stay grateful in hard times.
Advocate for yourself and ask a lot of questions. Find an oncologist you’re comfortable with. Especially if you have late-stage cancer, keep going until you find someone who’s willing to fight as hard as you want to.
Shari’s Stage 4 IDC Triple-Positive Metastatic Breast Cancer Story
Shari shares her metastatic breast cancer story, which began with her finding a lump in her breast. She details undergoing a lumpectomy, chemotherapy, and radiation.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
I noticed the lump in December of 2015. It appeared out of nowhere. It wasn’t sore or anything. It didn’t change or get bigger after I started watching it.
I really didn’t have any other symptoms that were apparent. I had decided to get back into shape in the fall. I had done that before and not had any issues. This time around, though, it was harder. It was weird for me.
I did notice a little heaviness in my chest, and now in hindsight, that might’ve been something that was a symptom of the cancer.
How did you get diagnosed?
I had a mammogram the next April. The radiologist saw that mammogram while I was still there and told me I needed to go see an oncologist.
I had saline implants, so instead of a needle biopsy, they went in surgically for a lumpectomy. It was a same-day surgery. The next week, I got the diagnosis of breast cancer.
Results of the lumpectomy
They took out the lump, and the margins were fairly clean. They said they had good therapies for triple positive and HER2, but then they wanted to check the lymph nodes. They did a PET scan.
The day I went back to the oncologist to start my chemo while waiting on the full diagnosis and staging, I found out it was metastatic and I was stage 4.
That was a lot to take in that day, but the treatment was still the same. My oncologist said it was a lot of information for me to take in on one day and was willing to reschedule my treatment, but I didn’t want to. We were treating it aggressively.
I was there and ready and wanted to get started.
How were you thinking and feeling after the diagnosis?
My original oncologist isn’t my oncologist now. His bedside manner isn’t the greatest. The day he gave me the diagnosis, he kept asking, “Do you have any questions?”
We didn’t know what to ask. Finally, my husband asked about prognosis. He said I had 2 to 10 years, depending on how well my body reacted to the treatment.
By the time I got home, I’m Googling everything. I read that the next place it can go is to your brain, which the doctor didn’t even mention. I’m thinking, “Is it there, too?”
We hadn’t done any testing for that. My surgeon ordered an MRI for me, and at that point it was clear, so that made me feel better.
My husband and I just thought of it as a chapter and something we were going to get through. It took a while to realize that this would be the rest of my life. We’ve definitely started living our lives how we want to.
There’s always a reason to not go on vacation or something, but now we don’t let those things get in our way.
My husband was there with me. He’s always there with me. I have 4 adult boy children. I told them all early that I had cancer and thought it was early stages. I had to call them all back and tell them it was metastatic, and they all dealt with it like they do with Google and research.
My parents had a hard time with it. One of my first thoughts was, “Am I gonna outlast my parents?” We told our closest family first, and then I had to tell work because I knew I was gonna start losing my hair.
It was same-day surgery. It was no big deal really. The biggest thing for me was after surgery and recovery and seeing the indentation in my breast on that side, because now it doesn’t look like the other one.
The recovery was very quick. We were back in surgery the next week to look at my lymph nodes and to get my port put in.
The lumpectomy was no big deal. It was a couple of stitches, and that’s about it.
What was your chemo regimen like?
I had 4 rounds of Herceptin, carboplatin, and Taxotere. I had infusions every 21 days. I would get infused on Fridays. The first couple really weren’t too bad. They didn’t feel great, but it wasn’t bad.
After the first one, I went back to work on Tuesday, and I realized I had been walking around in a fog all day. We started working from home the week after the infusion. I would go to work when I was able to and just did what I could.
The CT scan I had at the end of the chemo, that showed significant improvement. The oncologist said I didn’t have to do any more yucky chemo at that point unless something changed, but I did continue the Herceptin once every 3 weeks. I’m still on that.
What was the worst side effect you experienced from chemo?
I never threw up really, but I had underlying nausea all the time. The one time I threw up was after my second round.
I started feeling better, but I did too much. It was 10 p.m., and we had been out. My husband kept saying, “Are you okay? We can’t overdo it.”
Around that time, I had violent throw up for a couple of sessions, and then that was it. It had to have been that I just did too much.
My body was trying to tell me to rest. After that day, I knew.
By the next March, I had another repeat scan, and I had no sign of any active disease.
I switched oncologists. Nothing changed in my treatment, but now there’s a person I can talk to about anything. I went in for the results, and he says, “I understand you thought you got the wrong results.”
I asked him what no evidence of active disease meant. I asked if I was in remission, and he said no. I had to remember how much cancer was in my body and that it was stage 4 and metastatic. They don’t necessarily say remission, but they did say no evidence of active disease.
That didn’t mean there was no cancer left in my body, but it just means that everything that we’re doing is keeping the cancer at bay.
It was after that that I started wondering what the rest of my life was gonna look like. That’s when I started to go on Facebook groups and things like that. I tried to find other metastatic cancer patients.
Metastasis
Metastasis to the brain
In July, I was out for a walk after work, and I started having this really weird thing go on with my ears. It was more on one side than the other, but it was like my ears needed to pop. I knew that wasn’t what it was, though.
It concerned me. It wasn’t going away. The next time I had my regular visit, my oncologist wasn’t there. I talked about it, and I felt like they just brushed it off. I paid attention to it. It didn’t go away.
The next time I saw the oncologist, I told him I was having an issue, and sure enough, I had mets in my brain. I had stereotactic radiation. It was pinpointed to the spots.
How do the brain mets affect you mentally and emotionally?
The brain stuff scares me more compared to anything else. I’ve always worked, and I wonder if this is going to eventually take that away from me.
I worry about my memory. I’m always really paying attention to that, and so far it hasn’t been an issue.
Once I went in and had my first radiation, I found out it wasn’t that big of a deal. I had a headache later on that day, and I was tired until the next day, but other than that, it wasn’t really hard.
After that, I started having an MRI every 3 or 4 months. Before, I was like, “Oh my gosh, what am I gonna do when it goes to my brain?”
Well, now I can go in and get treated with pinpointed radiation, and I know what that’s like. It’s not scary anymore.
When I hear whole-brain radiation, that freaks me out, but I’m not to that point yet. When I do get there, I know I’m probably done working.
That’s what I gather from other people’s experiences I’ve read about. I try to not get too tied up in it. It can be pretty scary when you read how bad it can get.
What’s the targeted radiation like?
They do the mask. It’s like going in and having a facial first because they have to make the mask, which is no big deal.
It’s weird, though, because they screw that mask down onto the table. You have to be very still.
I always keep my eyes shut when I go into all the machines, but even still, I felt like I could see some light or something.
The first time is scary because you don’t know what to expect.
It’s noisier than your scans. You’re in there longer. I was in there for an hour and a half like that the first time. It’s scary, but it’s doable.
The next time I did it, it wasn’t scary anymore. You just have to go somewhere else in your mind to get you through it, and then it’s over.
It’s weird how you get used to all these things you have to do.
Originally, yes. When I think back on my first PET scan that showed I was metastatic, I wasn’t freaking out waiting for those results.
Maybe that’s because I didn’t know much about it. Ever since that first one that shook me, now the follow-up scans do make me anxious. My husband and I deal with that, though.
First of all, we don’t talk about it. We know it’s on the calendar. We get up that morning, and we both know we’re going to a PET scan before work. We just don’t talk about it.
At this point, I don’t tell too many people I’m having a scan because I don’t want them bringing it up and reminding me.
We do a couple of things that help a lot. We tend to plan our vacations around the time of the scans. Sometimes, we’ll go right before a scan. I might be on a 2-week cruise, and 2 days later, I’ll have a scan. Other times, we’ll schedule a trip for right after a scan.
We do that because we figure if I get a really bad scan result and I have to change my treatment, it’d be really nice to have a break from life beforehand.
We have gone on a 2-week trip every year since my diagnosis and a bunch of little ones in between. I would rather look forward to the next trip than dread the next scan. That’s helped both of us. It’s always in the back of your mind, but that helps.
Another thing that’s helped is control. With cancer, you’ve lost control. When I have my PET scan, I have it early in the morning and early in the week.
That way, I know I can get my scan, go to work, and that day after work, I can go pick up my results. That way, I know right then whether I need to be freaked out or let it go.
So far, things look good, and I don’t have to worry. Same thing with my MRI results. They usually pop up on my portal the same day if I get them done early.
It probably took me more than a year to get there. You read people talking about a new normal and how to find it, but for me and how I choose to deal with things, it took me a while.
It was hard for me when my hair started coming back and people didn’t think I was sick anymore.
They started saying, “Shari is a survivor!” Am I? I like to think of myself as a thriver, but I guess as long as you’re alive, you’re surviving.
Dealing with people thinking you’re fine when you’re not just because you don’t look sick anymore is really frustrating. I’ve gotten really active on social media because of that.
This isn’t just about me. This is about anybody that has any kind of illness where they don’t look sick. There are so many kinds of cancer. Not all chemo makes you lose your hair. You don’t barf with every chemo. Even if it does, there’s a lot of nausea meds.
I’ve done a lot of educating people because of this and that mindset shift. I’m an open book because I don’t want people to be naive.
I’m optimistic, but I’m realistic. I never know what the next scan holds or where I’ll be in the next 2 years.
If I go into remission — if someone wants to say it that way — fine, but I know it’s coming back. Don’t tell someone they’re cured, because the percentage of recurrence is so great.
Anybody who tells someone that they’re cured and their cancer is 100% not coming back is a liar. They can’t stop cancer yet, and there will be a cure when they can.
What has been the hardest thing for you mentally and emotionally?
The fact that people don’t know that I’m not fine. For a long time, I was really scared. Meanwhile, people think I’m cured and fine because I’m walking around with hair. Well, I’m also walking around with cancer in my brain.
When I realize that people still don’t get it, it’s hard to deal with. I used to get kind of pissed off about it, but I don’t anymore.
When someone would say, “This is Shari. She’s a breast cancer survivor,” I’d be like, “Wow they still don’t get it. How many times do we have to say metastatic?”
I don’t act like I’m sick, but I am sick. My life has completely changed because of it, so I don’t know how people can’t understand that.
You never know what someone is going through.
Before I got sick, I don’t think I had much empathy for someone who was going through a chronic illness of their own. That included my own mother.
Once I went through chemo, and even since, I realize now that life changes drastically because of illness. I’m much more empathetic now towards people because of that.
Can you talk about the hair loss?
I knew I was gonna lose my hair around 2 weeks after my first treatment. I ran my hand through it because it felt really dry, and it started coming out.
I made plans with my girlfriends. We had a shave party in my backyard 2 days later. I found out that my head is perfectly shaped.
I put a wig on that night, took it off, and never wore it again. I either wore hats or nothing.
Everybody gave me scarves, but I didn’t like them because they just made me look like a cancer patient. I didn’t like that. I didn’t look like me.
I shaved my head on Saturday and went to work on Monday with nothing. That’s when everyone knew something was going on.
Do you have advice for other people who are going to lose their hair?
Your hair is nothing. It doesn’t make you who you are. It’s what’s inside that makes you who you are. Your hair does grow back, and mine has actually grown back thicker. It grows back a lot quicker than you would think.
If you’re comfortable with a wig, wear one. If not, don’t. I had baby-fine hair and used to hate that. I have a video of the night we shaved my head. I have another one where I’d been without hair for 8 weeks or so, and I said something like, “I always talked really mean about my hair.”
Now, I’m like, “Hey, whatever you want to look like, go for it, hair. Whatever you’ve got.”
Can you talk about self-advocacy?
I didn’t really advocate for myself with the first oncologist much. I did ask about my brain stuff, and he said, “No, we don’t do an MRI unless you’re having symptoms.”
Then I saw my surgeon at a follow-up, told him what he had said, and he said, “I’ll order one for you.” The radiation oncologist said the same thing.
When my oncologist saw the results, he had a very “I told you so” attitude about it. I just said, “Yeah, it sure is nice to have peace of mind.”
I was going to worry, and then I didn’t have to because it came back clear. I was taking control of a situation that was going to keep me up at night.
Months into it, I started thinking, “Can I fire my oncologist?” I knew I was going to be seeing him for the rest of my life. The only reason I was going to see my oncologist was because I couldn’t get in to see the other one for 8 weeks.
I thought since I was going to be seeing him forever, I’d like to be able to see someone who cared about me and knew me. Every time my new oncologist walks in, he has something kind or helpful to say to me.
I consider him a friend. I’m a patient to him, and I understand that, but I see him as a friend. I never felt that with the first guy. I made the right choice.
What advice do you have for other patients on advocating for themselves?
It’s all about how you ask questions. For example, I was on a Lupron shot. That medicine caused me so much pain in my joints. I couldn’t get down on my hands and knees to do yoga to try to stretch things out.
It took me a while to figure out that the Lupron was the culprit. My quality of life was declining because of it. I started reading up on it and what to do.
I asked my current oncologist one day, “Can’t we just take my ovaries out so I don’t have to take the shot?”
He said, “If you had a genetic mutation, then I would say yeah, but since you don’t, no, there’s really not a point.”
I didn’t get the answer I wanted. A while later, I was still having pain. I said, “What do we need to do for me to get my ovaries taken out?” He said, “You’ll need to do X, Y, and Z.”
3 months later, the ovaries were out. It was a simple surgery. By a month after that, there was no more pain.
It was all in how I asked the question. When I do have questions, I try to go in with the right words. If I don’t understand the medical terminology, I’ll ask him to explain it to me a little bit so I can ask what I really want to ask.
A lot of times, if you can come in talking their talk a little bit and be an educated patient, that will get you the answers you need.
Living with cancer as a chronic illness
During chemo, it’s really in your face because you’re so sick. When I was that sick, I realized how many little things I took for granted. I realized how thankful I was for certain things.
Then I started to feel better, and I got away from it again. I got back into my life. I realized I really like the person who was so vulnerable and so thankful for so many of those things.
It’s about remembering that. I think of it as waking up in the morning and being grateful for getting to go to work, because there are people who wake up and can’t get up and do anything.
Cancer & Relationships
How do you and your husband lean on each other?
If I need to talk about something, I tell him I need to talk. He may not want to talk about it, but if I need to, I let him know I need to.
I talk, and I make sure he hears me because both of us are going through it, and that’s that.
I think it takes a while for the patient to realize that the caregiver is dealing with just as much. It might even be harder for them sometimes.
I’m the one that’s going in for everything, but he’s just as scared of losing me as I am of dying. The fact is the person that’s dying is gone, but the person that stays is the one that has to deal with everything.
You don’t figure that part out for a while. When you realize there’s 2 sides to all the crap you’re going through, it helps put things in perspective.
What advice do you have for other married couples going through something similar?
Go to somebody to talk. You need to see a relationship therapist. A man needs to hear the reality of what happens when a woman loses all her hormones.
There are still ways to find intimacy in a relationship, but you need help finding those ways. You need to know that going into it so you can start preparing and shifting.
What helped you through the hardest times?
During those first chemo treatments, I would have my husband just talk to me. He would talk to me about a trip we would take when I was feeling better.
After I found out I didn’t have to be on any more chemo, I looked at my husband one day and said, “I thought we were gonna plan a trip.”
That’s why we planned our first one, and we haven’t stopped. It’s a distraction. It gets us to do all the things we always said we wanted to do. It’s something fun and positive to think about rather than the what ifs.
The other thing is when I feel sorry for myself, I think of how much worse it could be. I would see people in the chemo room who were sicker than me, younger than me, or older people would be talking about hospice.
As soon as you have a story, somebody else somewhere already has a worse one than you. It’s a lot of wasted energy to sit there and feel sorry for yourself when it could be so much worse.
I took care of funeral arrangements and a will, which is something we had never had to think about doing, but now it’s taken care of. I don’t have to worry about it anymore. Dealing with those kinds of things and knowing now that they’re done helps, too.
If my kids had been little and at home, I don’t know what I would’ve done. I was grateful that my kids were all out of the house. They’re all boys, and I think if they had been girls, they would’ve been more consistently involved. Whereas, with boys, they opened the door, asked questions, and then shut the door again.
My heart goes out to women whose kids are younger. I’ve already got to see one of my kids get married. I have a grandkid. I’ve gotten to experience these things that other women might not get the chance to. My heart goes out to them.
Last Christmas was hard because all my kids came home for the holiday. They’re all adults and have their own lives, but it worked out that they all got to be there. I was able to have all 4 boys home.
I did every single tradition we’d ever done, and I did it on purpose because I don’t know for sure.
I was thinking, ‘Am I going to have them all home again? Am I going to feel up for it again? So, I made the most of it.
Sure enough, I heard from each one of them how much they enjoyed it. It was the little things they appreciated so much. Other than that, things are the same. They’re boys. They don’t call their mom as much as they should.
You might feel like you have to do everything really quickly. Everyone tells you you need to get more than one opinion, but you’re so scared that you feel like you have to do it right then.
You don’t have to do it that fast. If I had it to do over again, I would’ve probably taken a little more time. I could’ve probably waited the 8 weeks and gone to the good oncologist first.
I probably had the cancer in my body for years before it finally came out on my breast, so what was another 8 weeks really going to do?
Slow down. You don’t have to rush into decisions. It’s not going to make you die quicker because you wait for an appointment you’re comfortable with.
Whether you do it or someone else can do it for you, take care of it. The more you worry about things, the unhealthier you’re going to be.
Walk for 30 minutes a day, whether you feel like it or not. Things like that. Do anything you can do to keep feeling normal.
Be able to accept the help of all the people that want to help you. Allow people to take things off your plate. If something is bothering you, find a way of taking care of it.
Renee’s Stage 3-4 Relapsed IDC, HER2+, Metastatic Breast Cancer Story
Renee shares her story of stage 3 breast cancer before she relapsed and was staged at 4, or metastatic breast cancer. She details how she was able to get through chemotherapy, a bilateral mastectomy, and radiation.
In her story, Renee also highlights how she parented with cancer, how the diagnosis impacted her marriage, and how she has managed treating her cancer like a chronic illness.
Take it one day at a time. I know they say that, but it’s so true. You are going to be so overwhelmed. I joined Facebook groups at first and had to unfollow them.
There is so much advice out there. You have to decide what’s best for you.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
My kids and I were dancing around. My son accidentally knocked my boob, and it hurt really bad. I went upstairs and looked at it and felt it.
It felt hard, and it felt big. I started crying right away. I suspected it was cancer.
What happened at the doctor?
I called my family doctor and saw her a few days later. All she did was feel it, and she told me it was breast cancer.
She was going to send me for screening, but she was pretty sure. She had seen a lot of breast cancer cases before.
For the first 2 weeks, I wasn’t really okay. I came home and worked from home for a bit. I was a mess. I was terrified.
I was waiting for all the testing. When I got those results, I found out it was stage 3.
Chemotherapy
What was the chemo regimen?
The surgeon said I would probably do chemotherapy first and maybe we could do a lumpectomy, but that depended on how well chemo worked.
I did 4 rounds of AC (Adriamycin & carboplatin) chemo. My first round put me in the hospital. I had an infection in my port. I ended up in the hospital again after my third round. We reduced the dose for my fourth round.
Then I had 4 rounds of Taxol. That wasn’t as bad. I had a lot of bone pain with the first round of that, but the next 3 were okay because they adjusted my meds.
Can you talk about your side effects from chemo?
Days 3 to 6 were the brutal days. With AC, I was nauseous from the start. My nurse told me to eat little meals throughout the day. That really helped, but I wasn’t very hungry, so I had to force myself.
My appetite wasn’t bad on the Taxol. I didn’t have many problems with that.
On Taxol, I lost my eyebrows and eyelashes. I had lost my hair, and then I just looked like an alien.
I’m a really vain person, so I’m shocked at the fact that the hair loss didn’t bother me. I was more concerned about getting the meds in me and getting the cancer gone.
I shaved it when it started falling out. I had cut it short, and I thought it was cute.
It hurt when it was falling out. People had said that, and I wasn’t sure I believed them, but it does hurt. It’s hard to explain, but it was weird and painful.
Surgery
What was the mastectomy like?
After the AC chemo, I had a scan. They knew then and there that it hadn’t shrunk enough to have just a lumpectomy. My surgeon suggested a mastectomy at that point.
I had scheduled the mastectomy. Then, 3 weeks before that, I decided to go ahead with the bilateral mastectomy.
Mastectomy surgery recovery
I was nervous. The only surgery I’d had before was a C-section. I was most nervous about the pain I was going to experience after.
I wasn’t really nervous about losing my breasts so much. They were killing me. I wanted them gone.
I remember the anesthesia hurting. The needle was painful. I don’t remember much of waking up, but I know I wasn’t in pain.
They told my husband that everything went well, and he told me because I was out of it for a while after I woke up.
It was a day surgery. I came home and put my husband’s shirt on. I had bandages around me. Someone had told me not to look when the bandages came off. I was so numb that I wasn’t in any pain.
About 2 weeks later, I had some weird tingling in my nerves around my elbows, but that was it.
I’m squeamish with blood and scars, so when I looked, it was kinda ugly looking, but losing my breasts didn’t really bother me. I wasn’t as traumatized as I know other women have been.
I had the mastectomy at the end of January, and I had radiation in the beginning of April, so I had a nice break.
Radiation and more chemo
I had 25 sessions of radiation. I went every weekday for 5 weeks. Radiation took a while, and then I was just tired.
I had started Herceptin while I was on Taxol, and I continued that. I got that infused every 3 weeks. I stopped for a little bit when I had my surgery. I had 18 infusions in total.
Relapse
Remission to relapse
At my first visit after the surgery, I got the official NED declaration. I was done with treatment on December 31, 2018. When I was told I was NED, I didn’t know if I fully bought into that.
It was really hard to get back to my normal life after that. It felt like nobody really understood me and my emotions. Just because I was NED didn’t mean I wasn’t worried a lot.
When my Herceptin was done, I was having some pains in my chest. I was going to the ER sometimes. It ended up being nothing. They said it was anxiety.
Then 2 months later, I started getting headaches. I thought I was going insane. Turns out, my headaches were something.
How did you find out your cancer was metastatic?
I had headaches constantly for about a month. I was going away on vacation, and I went knowing that I very well could be in metastatic relapse. I just wanted to enjoy myself.
When I got back, I got really dizzy. I called my doctor and went to the after-hours clinic and wasn’t going to be able to get an appointment for about a month.
I worked the system and went to a different hospital in a different town. I presented myself with constant headaches. The doctor saw me and ordered a CT scan. Then he came in and told me.
I think I already knew before I found out. My twin sister, daughter, and mom were there with me.
It wasn’t until I told my son that I started crying. After that, I was a mess for 2 weeks straight.
Treatment plan for the brain mets
I had to get radiation. It was inoperable, so we went the radiation route. I had the mask and everything, but it didn’t scare me.
I must be nuts because I actually thought the mask was kind of nice.
I just thought of it as a spa mask they were putting on my face. It was cool and felt good.
I had 5 treatments. The treatment itself took 5 minutes. It was only 10 to 15 minutes total. It just made me tired. I lost my hair in certain spots.
Then I went on Taxol again. I ended up in the hospital from that for 7 days. One of my sons was sick, and I got it. I didn’t have enough of an immune system to fight it off.
That was a downward spiral. That was a horrible experience. They couldn’t figure out what was wrong. I just kept saying, “My son had a bad cold. I have it, too, and have it worse.”
I did Herceptin and Perjeta after that. I had some bad diarrhea from that, but I was okay. My oncologist was nervous about those drugs, though, because they don’t get through the blood-brain barrier, so he put me on Kadcyla. That’s what I’m currently on.
It’s an infusion I get once every 3 weeks. I’ll be doing this until it stops working. I had some bad neuropathy from it, so I paused for a few months, but I’m back on it. I get extreme fatigue from it, too. My nose drips sometimes, but it’s not constant. That’s pretty much it.
What’s your status now?
I get scans every 2 months. I was stable in December 2019. I was fairly stable in the beginning of March 2020.
There was this one spot, but they’re not worried about it. They think it’s from radiation because it’s still in the tumor area.
Reflections
How are you coping mentally and emotionally?
I went and saw a counselor at the cancer clinic. She helped me process things a lot. I have a palliative care doctor as well who helps me process things. I have Facebook support groups.
I faced my mortality, and it just gets easier to face it.
What is it like to live with cancer as a chronic illness?
I’m really optimistic. I’m quite a positive person. Either that or it’s denial, but I’m just really a positive person. I guess I just have a lot of faith in science.
It helps that I know I still have another great treatment option lined up if this one stops working.
Who knows how much time these treatments might buy me and what we might know then? I have thought about dying.
The hardest part is my children and leaving them, but I’ve done things to prepare. I’ve written them emails just in case. I get angry about it sometimes, but then I think positively a lot.
I’ve done some meditation and classes to learn to deal with stress and anxiety. It’s a daily thing.
Your support system
My husband has been very helpful. He’s taken up a lot of the housework, cooking, and all that. My kids have helped. Maybe not as much as I’d like, but they’ve helped. They’re all teenagers.
I have a twin sister, and she’s amazing. I don’t know how I could’ve gotten through this without her. I also have another sister who is very supportive as well.
We talk every day. What I like about my twin is we talk about normal stuff. We talk about what we’d like to do this summer and shopping, and we make future plans. We talk about the everyday.
My mom comes to all my chemo treatments with me. I love that time with my mom.
Others have offered to come, but I don’t want them to because that’s my time with my mom. I like how she looks after me.
I’ve had some great friends look after me. I’ve lost some friends who’ve distanced themselves. I’ve had some great new friends who have stepped up, too.
We’re a hockey family, so we get a lot of support from other families. We live in the suburbs outside a big city, so a lot of neighborhood families have helped out with meals and things.
Cancer’s impact on your relationship with your husband
It’s so hard. We had just gotten married. Then 2 months later, I was diagnosed. Before that, we were together for 3 or 4 years.
I felt supported, but there was a lot of tension in the house. Then, when the stage 4 diagnosis came along, we really connected. It was like nothing else mattered. We realized what was important.
A lot of the lack of communication was me. It took me going to a counselor to find ways to express how I was feeling. I didn’t understand his side of things.
I was like, ‘I’m the one with cancer,’ but then I realized that it was scary for him, too.
I felt like I failed them. Not because I felt like it was my fault that I got sick, but because I couldn’t do all the things I wanted to do for them that I normally could do. I felt tired and weak, and then I felt like a failure.
In happy moments, I’d be happy for them and then be so tired. In struggles, I wasn’t as available to them. I felt like they stopped telling me as much.
What advice do you have for someone who has just been diagnosed?
Take it one day at a time. I know they say that, but it’s so true. You are going to be so overwhelmed. I joined Facebook groups at first and had to unfollow them.
There is so much advice out there. You have to decide what’s best for you.
If you have a good oncologist, trust in them, but also be your own advocate. If you’re going to do your own research, make sure it’s not Dr. Google research. You’ll learn through the experience.
Try to see the positive. Maybe it won’t be every day, but find it. I’m not saying, “I’m so glad I had cancer.” I’m not. Practice gratitude, though, because having a negative attitude is not going to help you.
In her story, Stephanie also highlights the importance of patient self-advocacy, guidance for couples going through cancer, and how cancer changed her view of cannabidiol (CBD).
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Know that this is survivable. Breast cancer is one of the most survivable cancers.
Make sure you eat and you rest. Those are the 2 things that you’re not going to want to do because of the drugs you’re taking, but you need food, and you need rest.
You need to do everything in your power to make yourself be able to do those 2 things. That’s how your body is going to heal.
Stephanie J.
Diagnosis
Describe the lump you found
In spring, I was giving myself a self breast exam. They say you’re supposed to do them every month, but I would say I did them every 6 months or whenever I would think about it.
It was right on the top on my left breast above the nipple area. I could touch it. When it first came in, it was itty bitty. Your breasts swell because you have cycles, and when that happened, it seemed to go away.
Over the summer, though, it got to be about 3 cm. It was pretty aggressive. Triple negative is known for being pretty aggressive.
When did you go to the doctor?
I didn’t go to the doctor until August. When it was obvious it got bigger and wasn’t going away any time soon, I decided I should get it checked out.
I was self-employed, and I didn’t have insurance. I thought, “If it’ll go away, fine.”
I started researching options on how to get it checked out. I pretty much just wanted to confirm what I already thought it was at that point.
What resources did you find for getting care while uninsured?
In Dallas, we have Baylor Hospital. They have a big cancer center. I’ve always been a researcher, so I started going to the library at the hospital and asking around.
I got referred to the Bridge Breast Network. They’re a group that helps uninsured and underinsured women of Dallas and Tarrant county get diagnoses. They got me a mammogram and biopsy.
How did you get the diagnosis?
It wasn’t a terribly long process. First, it was the mammogram. They noticed the lump and did the ultrasound and needle biopsy that day.
That was weird because they numb you. I was watching the screen and the needle going into the tumor, but I didn’t feel anything.
It wasn’t as scary as I thought it was. It wasn’t bad. It took about a week to hear back on the results.
I was working part-time at a taco joint and bar. This lady came in, and she was bald and dressed in pink head to toe. She was there to see her grandson play a show next door.
I told her I just had my biopsy done, and she was so sweet. She said, “If it happens, just know that I’m almost done, and it’s survivable.” She took my info and kept up with me for a while. That helped me a lot.
My doctor called me about a week later. I feel bad for medical professionals because they have to deliver bad news all the time.
She called me and said, ‘We got your results back. It is cancer.’
It’s almost like a punch in the stomach. You know it’s coming, or you at least have a feeling that it might be coming, and you prepare yourself. Then you hear it, and it still took my breath away.
I didn’t know what I was going to do with this diagnosis since I didn’t have any insurance. The doctors called the Bridge as well and let them know the results.
They called me up and invited me in. They gave me a treatment packet. They told me all the doctors they had set me up with. They really were instrumental in me still being here.
What was your treatment plan?
Because of my staging and grading, I was given a 23% chance of living to see 5 years. Here I am 10 years later, still kicking.
Because I was triple negative, my doctor said if I responded to chemo, things would look pretty good, but if I didn’t and it metastasized, there wasn’t going to really be anything they could do.
I was going to do 4 months of chemo, then a double mastectomy with expanders and reconstruction.
They did a mouth swab for genetic testing and found out I was BRCA1+, so they wanted to clean house with an oophorectomy and hysterectomy after the mastectomy, too. They were pretty thorough. My final reconstruction surgery was about a year after my diagnosis.
Chemotherapy
Can you talk about the chemotherapy?
Chemo is the one thing everybody dreads. It doesn’t look pleasant. I wasn’t excited about it at all. Being the researcher I am, I looked into everything. I had 2 stages of chemo. The first was Adriamycin and Cytoxan. The second half was Taxol. I did 4 of each.
I researched how to endure chemotherapy. Of course, an illegal way to endure chemo is cannabis. I had never really spent much time with it, so I talked to friends that knew about it. I asked my oncologist about it, and he said he couldn’t tell me to do it because of legal reasons, but he also didn’t tell me not to use it.
I was 1 of a few patients he had on chemo at the same time. I was 1 of 2 that was using cannabis, and we were the only ones that actually gained weight on chemo.
I had infusions every other Tuesday. They had to hit me pretty hard. I was really drugged up on the first infusion day. They gave me Benadryl, steroids, and anxiety medicine. I hated the steroids. I felt like the whole apartment was spinning that first night after getting infused.
The AC wasn’t fun. I had leg muscle pain with the Taxol. I also experienced some neuropathy. The skin on my feet and fingers was tingly and painful. The Taxol was probably harder.
Both kinds sucked, but the Taxol was harder. They also gave me Neulasta shots after chemo to make my body produce white blood cells. That made every bone in my body ache.
It took about a week for me to start to feel better. Chemo side effects are cumulative, though, so the further along in the process, the more everything hits you and the harder it is to recover.
My husband is a tattoo artist, so he works nights. He came home one night, and I was lying on the floor underneath the coffee table gripping the legs of it because I was in so much pain. I don’t like pain meds and opioids or anything like that.
That was the one time I had to call and ask my doctor for something. I was lying on the floor, crying, for a while until he got home.
That was the one time I thought, ‘This is going to kill me. I’m not going to survive this.’
What advice do you have for someone going through chemo?
I’m a big proponent of cannabis and CBD if you’re in a legal state. I don’t want to recommend that you break the law, but I will say I can’t imagine going through chemo without it. Even with it, it was really difficult, but it helped a ton.
Always talk to your doctor. They’re a part of your team. Don’t keep things from them. Know that this is survivable. Breast cancer is one of the most survivable cancers.
Make sure you eat and you rest. Those are the 2 things that you’re not going to want to do because of the drugs you’re taking, but you need food and you need rest.
You need to do everything in your power to make yourself be able to do those 2 things. That’s how your body is going to heal.
We did a PET scan before I started. I did a few CTs throughout. They would do ultrasounds here and there, but the big scan was after chemo. At the end, they did another PET scan, and that’s when I found out I was in remission.
I was glad when he told me, but I knew I still had to get through the next 5 years. Then 2 weeks after that, I did my double mastectomy.
Surgeries
What was the double mastectomy like?
Prep beforehand was really about making sure my body was strong enough and could handle surgery. I drank a lot of protein shakes and really watched my diet to make sure I could take the surgery.
The day of the surgery, we got there at like 5 a.m. It was an 8-hour surgery, so it was a long day. I was out, so I didn’t know it, but it took a while.
It was like 2 surgeries because the breast surgeon took everything out, and then the plastic surgeon came in and put everything back together with the implants.
Waking up from surgery was one of the most painful experiences of my life. I’ve had 2 sons naturally, and getting my breasts removed was on par with that.
Waking up from surgery was terrible. They have to split the chest muscle, so it was rough. That’s what really tore me up, I think.
I was in the hospital for a few days, went home, and rested and recovered. I was nervous about being able to handle the recovery. I had 2 drains coming out of me. I had to learn how to take care of those. I didn’t want to cause any infections.
What were the oophorectomy and hysterectomy like?
They did both at the same time. The gynecological oncologist who did the surgery was in the other room and was controlling a robot. I don’t know how to describe it other than it’s just really cool science stuff. I was only in surgery for 3 or 4 hours.
They inflate you, and they make tiny incisions in the bikini area. Now I can hardly see my scars. That surgery recovery wasn’t nearly as bad as the double mastectomy. I didn’t really have a lot of pain or anything. I had gas built up from being inflated. That’s not so fun, but that’s about it.
I couldn’t drive for a while after the hysterectomy. It took about 6 weeks before I was cleared to drive.
What was the reconstruction surgery like?
Throughout my treatment, I was getting my breast expanders filled. When they filled the expander, they would take a magnet and it sticks to a metal valve. When it sticks, that’s how they know where to add the fluid. They do a little at a time, so it wasn’t painful really.
The reconstruction surgery was a nice little day surgery. I felt better after that surgery because the expanders are heavier than the implants.
I felt lighter. I just had to live in a sports bra for a while. It was no big deal.
Quality of Life
You’re thinking of getting a mastectomy tattoo
I haven’t done it yet, but we’re planning a mastectomy tattoo. My husband is going to do it for me.
He was horrified by the apparatus in the plastic surgeon’s office that they use to tattoo nipples. He takes his work very seriously.
We’ve been trying to decide on a design. A tattoo artist is going to be good at realism, so I’m sure he could do a 3D nipple, and we might go with that.
But while you’re there, why not add a cool design? I’m a creative professional, and I’m pretty tattooed already, so I’m working on something a little more involved.
We’re thinking of doing some filigree design with hearts. My scars travel from nipple to pit on each side, so we might do some sort of vine with flowers following that.
You can tattoo over scars. I don’t have a lot of feeling near my scar, so it’d probably be the easiest tattoo I’ve ever gotten.
My husband is just going to bring his stuff home, and we’ll do it on the house.
During the process of going through cancer, you just lose all autonomy. You’re no longer your own person for a little while. Knowledge is power.
Sometimes we get scared, and we don’t want to know, but it’s best to be a student of the disease. Learn everything you can and be your own best advocate.
All of my doctors were very open and communicative. They saw early on that I asked a lot of questions and knew my stuff, and I think they appreciated that.
I asked them about hair loss, and my doctor said it would happen on day 14. I thought that meant I was going to wake up on day 14 and have a ring of hair on my pillow.
It wasn’t like that at all. I buzzed my hair in preparation. I woke up, and I still felt my fuzz.
I went to run some errands with my friend. We were in the bank parking lot, and I went to scratch my head, and it was all full of hair. We both looked at each other, looked at my hand, looked at each other, and started crying.
Now I look sick. Now people are going to know I’m a cancer patient. That was harder for me. Having no hair meant that people would know I had cancer, and that bothered me because I hate the sympathetic head tilt.
Eventually, all my hair fell out all over my body. Something people may not realize this, but even your nose hairs fall out, so your nose is constantly running. I only grew about two-thirds of it back, so I always have tissue on me.
If you can, buzz your hair. It feels like it would be more traumatic if it was long and coming out in big clumps than if you just go ahead and buzz it and start getting used to the short hair or no hair.
Plus, when the fuzz comes out, it’s a little easier to handle than I imagine it would be if my hair was its normal length.
It usually comes out in patches, so if it’s buzzed, it comes out easier. After the fuzz started coming out, I went ahead and shaved it. I went through chemo in winter, so it made it really easy to have knit caps on all the time. If not, I would just rock the bald head.
How did the cancer affect your relationship with your husband?
It’s funny because we were just friends when I got diagnosed. We hung out with the same people. He would come around and check on me when I worked at that bar. He’d come sit, but I’m clueless, so I never got it. I don’t do signals well.
Then I got diagnosed. A week after I got the diagnosis, I posted on Facebook that I wanted to have a nice night out before treatment started. He was like, “I’m down. Let’s do it!” I’m still clueless at this point, but I of course agreed.
We ate sushi and went to a concert. At one point, the band was taking a break, and there was just overhead music playing. He leaned over and said, “I want to be with you through everything.” I was like, “I don’t even know what everything means.” He just said it again more emphatically.
We’re about to have our 5th wedding anniversary now. He never missed an appointment or surgery. He’d work until 2 or 3 in the morning and have me to pre-op by 5 a.m.
He would tell me I was beautiful even when I had drains and no hair. He’s just a good dude.
Do you have advice for other couples going through cancer?
The human brain is wired to be scared of things because we want to survive. In order to make a relationship work, you have to push through fear to get to the love.
People often get this mixed up: the opposite of love isn’t hate. The opposite of love is fear.
Thankfully, my husband pushed through his fear, and we’ve made it through to the other side now.
As a caregiver, that’s good to keep in mind. It’s okay to be scared, but you just have to get through it.
You’re on a journey together. It’s okay to cry together and experience it together. The cancer patient is the patient, but the caregiver has feelings, too. If you need to go to some type of counseling to get through it, do it. Therapy works.
Always be patient. Understand that the both of you are going through it. Try not to isolate yourselves. Be together.
They were both in high school. My younger one was a freshman. I just thought, “I want to live long enough to see them both graduate high school.”
I’m a matter-of-fact kind of girl. I just tell the truth and deal with it. So, I met with them and their dad. I talked to their dad first and told him we needed to tell them together. We sat them down and just told them.
They had just lost their grandfather to throat cancer a few years before this, so naturally, they were both terrified. I just let them know that I was going to put in my best effort.
That was hard to know they were scared I was going to die. Deep down, I was scared of leaving my children, but I didn’t say that to them obviously.
Telling your kids is an emotional time. I’m grateful they were old enough to understand and take care of themselves if they needed to.
I imagine it’s incredibly tough for mothers with younger children, who can’t understand. I knew if I didn’t make it for some reason, they would at least be able to comprehend it.
The support system I had is another big reason I’m still here. My husband, my friends, and women I met through the Bridge Network. They also had therapy.
Baylor offers things like that. That’s a great thing. People in medicine are realizing there’s a whole body wellness. The mind and the body are connected.
Having mental and emotional support was really instrumental in my recovery.
I had friends come over with food, and we would watch bad TV together. Another friend came over to teach me how to draw my eyebrows on. Little things like that got me through the bad stuff.
How has your experience changed the way you view CBD
I work for an ad agency, and we do a lot of work with CBD and marijuana companies. It’s really nice to be on this side as a Gen X person. It’s neat to be able to put my experience out there and try to change the stigma.
I had a friend who was sick, and she couldn’t take pain meds very well. I brought her some CBD ointments and things so she could at least try to rest.
Being able to take my knowledge and skill set to help other people maybe find a product to help them get through cancer is amazing.
After my cancer, that’s when I really started wanting to be in this space. I was a DARE-generation kid, so it was a shift for me.
To this day, it helps with my chemo-induced IBS, hot flashes, and neuropathy.
For me, it was living every day with intent. I don’t stress about the things I can’t control as much anymore. I can only control how I react to things.
Also, I’ve got new fuel for my fire to do things I want to do. I want to photograph all the state parks in Texas before I die. Things like that. I try to go for things more.
I also care for myself more than I used to. Self-care and taking time to make sure I’m rested used to be on the back burner a bit, but it’s not now.
I like to read, so I try to make sure I dedicate more time for that. I love to be in nature, so 1 or 2 weekends a month, I go to a state park. Self-care is subjective, so you get to choose what feeds your soul.
Time with my family and time doing things I enjoy are what’s important to me, but self-care is about what’s important to you.
What is your advice for someone who has just been diagnosed?
Research. Communicate with all of your medical professionals. Don’t be afraid to venture into spaces that have been scientifically proven to help you. Knowledge is power. I think research is the number one thing you can do for yourself once you’ve been diagnosed.
Genoa shares her stage 3 HER2+ breast cancer story and describes her treatment, including chemotherapy, why she chose a lumpectomy over a mastectomy, and radiation.
In her story, Genoa also highlights many important quality-of-life issues, like dealing with the hair loss, working through treatment, and being a patient self-advocate.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I just assumed that that diagnosis meant the end of life as I knew it, and I’m here to tell you that it does not, and it did not.
Cancer is no longer the death sentence I used to think it was growing up or what I feared it might be.
Genoa M.
Diagnosis & Tests
What was your diagnosis?
I had stage 3, HER2+, which is an estrogen-positive breast cancer. It was aggressive.
I had been feeding it. Basically, I had had an estrogen-patch that I attached to my butt every 2 weeks to help me through menopause. All that had happened was I had accelerated [it].
Through medical intervention trying to help me manage my menopausal symptoms and re-balance my hormones, I had accelerated something in my breast that was cancerous.
The best description I ever had was from a nurse practitioner [who] drew me a diagram on the sheet that they cover the examination bed with.
She drew me a diagram and said, ‘Here are the ducts in your breast. Really, what’s going on is your cells are having a party outside of the ducts, and we need to get them back into the ductwork.’
You are having an outrageous party in your breast outside of the ductwork, and that’s why you have a tumor. That made the most sense to me.
How did you get diagnosed?
My life at the time was simply that I was living in a city I’d always wanted to live in with a husband I’d always wanted to be with. I had a stepson who had made it to university, and I was working in my career.
Despite all these wonderful things, I felt nauseous.
I think as women we know that nausea is there for a reason. I for sure knew I wasn’t pregnant because I had had a hysterectomy, I was older in life, and I was in menopause.
If I felt nauseous, that meant something was really wrong. When something’s wrong, you intuitively know to go get some help. That’s how I knew something was off.
I was due for my annual mammogram, and I went to see my OB-GYN. As luck would have it — or maybe the universe was taking care of me — I had hit my deductible on my annual health insurance.
My OB-GYN, in addition to requesting my mammogram, also said, “Why don’t you have an MRI? You’ve had a history of breast cancer in your family, so let’s do an MRI as a baseline.”
I thought that was a fantastic idea. I also let her know I felt nauseated. She’s like, “I don’t know why you’d feel nauseous.” There was absolutely no reason at all to be feeling icky. I just felt icky, so I scheduled my mammogram.
Describe the MRI
It was incredible. I actually managed to have my MRI scheduled on the same day. I don’t know that you typically get both the appointments that you want on the same day, but that’s how it worked out for me.
I do think there was something very special going on because by the time I got to my mammogram in the afternoon, the results of my MRI had already gone through. They did a very different mammogram because they knew exactly where to go.
The fact that it wasn’t just a technician doing my diagnostic mammogram with an ultrasound — it was a radiology doctor — I knew something wasn’t good.
I knew something was wrong because I felt nauseous, so it was almost as if, “Okay, they’re taking me seriously. They’re not just saying we don’t know why you feel nauseous. They’re looking for something.”
They were looking for something on the right breast. They let me re-gown and sit up. Then they told me they could see a tumor-like mass, and they would need to do a biopsy the next morning.
All I remember was the doctor telling me they’d found the mass, and then the technician just gently rubbed my back while I breathed.
All I wanted to do was put my street clothes back on, go home, and find my husband.
What were the next steps?
(In 2 days: MRI → mammogram → breast biospy)
I consider myself so fortunate to be able to get that much help that quickly. Once I knew the biopsy [was] the next morning, they were already talking to me about getting a surgeon.
I was thinking, “You can take a tumor out, but what about the rest? How far has it gone?” All I could remember from my mother’s cancer — she also had breast cancer in another country a long, long time ago — they had not checked the lymph node.
Her tumor was in her breast, but the lymph node also had cancer cells. The lymph node is the gateway to the rest of the body, so I was thinking you must check the lymph node. Don’t just do a biopsy on the tumor itself.
I won’t say they fully dismissed it, but they were very much, ‘If you need chemotherapy and your tumor is malignant, then we’re going to just blitz everything.’
That wasn’t good enough for me because I wanted to know — I was almost obsessed with knowing — has my cancer spread?
They took the biopsy and put a clip in to tell where the tumor was. The clip was very important because the surgeon then went looking for the clip in order to take the tumor out.
Basically in 48 hours, I’d had an MRI, a diagnostic mammogram, a biopsy, then they sent me home for the weekend. You needed at least 3 days to get results.
Biopsy and scan results
We waited it out. It was everything you could imagine in a long weekend of not knowing and imagining everything in between.
Then I got the call on the Tuesday to say it definitely was cancer and to come back in. They would walk me through my diagnosis.
We went back in, and they actually did a wonderful job of explaining to me what my full diagnosis was [and] giving me a lot of information about the pathology from the biopsy. It was late September. I actually started chemo in October. We went really fast.
What is a clip?
The clip is a marker. When you have a biopsy, they’re already in your breast. They’ve already taken a sample of the tumor and the growth.
Before they take the needle out, they put a tiny marker. It’s like a metal clip. and they put it in there to say, “This is the place. This is where the trouble is.”
For any ultrasound or any surgery you have afterwards, that’s how they go looking for that. That’s how they map it all out.
Describe the breast biopsy
That actually didn’t hurt too much. It was once they put the local anesthetic in the tissue area. I was fine until they took a sample. When cancer is in a cellular form, everything is angry and upset, and the cellularity is compromised.
When they actually took the sample, I did feel the pinch. I felt a sharp pinch, and then it withdrew. I know I reacted, and they said, “Don’t worry. It hurts because everything is wrong, basically. We hit it. The fact that you felt it means we got a target, and we’re not going to do anything else.”
How did you decide between a lumpectomy and mastectomy?
There’s some big information here I do understand and would love to share, because you have the option of breast conservation if you want it [or] if you are really anxious.
My aunt did this after her chemotherapy because of my late mother. She decided to have a mastectomy just as a prevention.
She did the Angelina Jolie. Take it away. That for her was sanity-given, and they offered that to me. If I felt that would give me my best emotional chance of recovery, they would have taken the breast off and then worked on reconstruction.
The good news is for all women that they now know enough about how breast cancer behaves so that your chances of survivorship are just the same if you have a lumpectomy or a mastectomy.
It’s more about do you feel better not having the breast there? I actually felt better having the breast there. I chose breast conservation and a lumpectomy.
How did you choose hospitals?
I went to my usual OB-GYN for the mammogram. Because I was already getting care there, that’s where they did my MRI and breast biopsy. For chemo, I changed to another hospital because the chemistry between me and the first medical team was not what I wanted.
Then they tried to set me up with an oncologist and a surgeon within their own system. I had appointments with both the oncologist and surgeon that same week, so they definitely moved quickly.
The problem was I didn’t feel that I was with the right oncologist and surgeon. It wasn’t that they were incompetent in any way. Their style wasn’t working for me, if that makes sense.
I’m a very visual person and an emotional person, so their body language wasn’t feeling good to me. I didn’t know that I could develop a relationship with them so I could tell them how I really felt or where my concerns were.
Even their offices made me feel depressed and insecure. I kept looking at where they would give me my chemo and thinking, “Well, I’m going to be so sad sitting in that chair in this depressing room doing something I don’t want to do anyway.”
When your gut’s telling you that nothing’s coming together, you should probably listen to it.
Chemotherapy & Side Effects
How did you determine treatment?
What they wanted to do was shrink the tumor first, then remove it surgically.
Their recommendation was go through chemo, try and get the best response we can, and then it can be significantly reduced. Then we’ll go in and take it out, and you’ll have radiation.
Describe the chemo regimen
It was neoadjuvant chemotherapy, including taxanes (Taxotere), carboplatin, and trastuzumab (Herceptin).
How did chemo go?
Your first infusion is your staging infusion, and it takes pretty much the whole day.
After that they can go quicker and speed up. About halfway through, I was having the 4 bags over 45 minutes to almost 30 minutes. They were speeding me up and speeding me up. The side effects were the same, but you didn’t have to stay there as long.
The best advice I had about getting through the day of chemo — and it makes total sense if you think about it — just get up and move.
Don’t just sit there and let all the meds flood through your system. The best thing you can do is move around and get them to move around.
I found I was able to disperse a lot of the nausea and a little bit of my anxiety, too. Just get everything. The more I drank, the more I flushed. The more I moved, the more things moved around me. I definitely felt better for it.
What were the chemo side effects?
nausea
fatigue
constipation
diarrhea
Describe the side effect cycle
Days 4 and 5 were the toughest days. If you knew they were coming, you kind of just built everything around it. Days 1, 2, and 3 I just always felt floaty and drugged up.
Days 4 and 5 were the hardest: nausea or just energy, emotions. [It] got better on day 6 and got better on day 7. It was just the drugs working their way through my system.
Week 2 was always the rebuild. You’re coming back off. Week 3 was, “I’m actually feeling pretty good.” Then you go right back to week 1. I had constipation, diarrhea, so bizarrely both, and then the nausea.
The really good learning from all of that is take your side effects straight back to your oncologist and team, because they can adjust your dosages.
What made you feel better?
You don’t want to exercise. With all your being, the last thing you want to do is exercise or move, but you must because you will feel better.
I’m not an athlete by any means, but I could swim and could walk. As long as I moved and tried to do those things, even though I felt crappy, I would always feel better afterwards.
The other thing I learned was however nauseous I felt and however much I didn’t want to eat, if I ate through my nausea, I’d feel better, too. It really is true.
Then fluids. I’ve never been someone that wants to have 8 glasses of water a day. I still don’t want to have 8 glasses of water a day, but I would just take my big 1.5 liter bottles and keep refilling them.
It just made so much sense to me. I wanted to flush all the impurities out. The only way to do that was to drink a lot of water.
Radiation Therapy
Heading into radiation
Happy it was less than I thought it’d be. It is once a day every day for the whole month of May, except weekends.
Negotiating less radiation
My radiation [was] shorter than I feared. Again, you can negotiate. Your doctor will tell you that you need to have a standard. They’re supposed to tell you, and they will, that the standard radiation is 5 weeks plus a booster week, so 6 weeks of radiation.
The reason they tell you it’s a full 6 weeks is because there are 15 years of research attached to that being the best protocol. However, there are 5 years of research to say that 3 weeks and a booster week yields the same results.
They’re required to tell you that the standard is 6. Going to a hospital every day for 6 weeks is overwhelming.
Radiation, just like chemo, has side effects and other issues. It fixes 1 problem but maybe creates others.
When I really dug in and really pushed, turns out they’re very comfortable with less, as long as they’ve fully expressed to you it’s your choice.
The moral of that story is you are in charge of your health, and you have the right to ask and the right to negotiate your own treatment plan.
I did not understand my relationship with my hair until I was diagnosed. I think the times I broke down and cried over my diagnosis were triggered because I knew my hair was going.
Doing this interview without a wig on is one of my first attempts to be braver about not wearing a wig. I wanted to choose this opportunity to get braver and get more okay with not having hair, or at least not having the hair I would’ve liked to have.
I did not understand how much my identity was wrapped up in being able to brush my hair. When you start losing it, it’s so traumatic. You know it’s coming, and I think you resist — well, I did.
I fought against it. But every time you touch your hair and there’s a chunk, or roll over on your pillow and leave hair on one side of your pillow, you realize that’s actually more distressing.
I have a really amazing hairdresser, and I knew it was time to take all my hair off. I also had gone and gotten a wig, the kind of wig you needed cut.
I called my hairdresser, and I’m like, “Okay, Ed, I’m coming in. We have 2 missions. 1, I need a buzz cut. 2, I need you to cut my wig into something that looks like me.”
He did both of those things. He was so supportive and so kind. It was liberating having what was left of my hair cut off. It was definitely more distressing leaving it there.
I don’t know that every woman feels this way, but I kind of needed to just get it over with.
All of a sudden, you lose your hair after the second chemo. It’s almost like clockwork. It was after the second chemo. I just made it through Thanksgiving mostly with hair.
I was about 8 weeks in. All of a sudden, I wasn’t worried about shedding. I had a bob cut to my chin. If every time I turned around I was losing hair, it was so distressing.
It was liberating to not have that emotion on top of, “I’ve got a tumor. I need to deal with this because I really like life, and I don’t want this to rob me of anything.”
Did you wear a wig?
Yes. I hate wearing the wig. 2 weeks post-chemo, it looked like a shadow on my head, but there were tiny little hairs growing.
Today, knowing that you were coming and knowing that I wanted to show up just me and not me with a wig, I looked in the mirror and I’m like, “Could I see myself going into the office without a wig? Stuff’s happening.”
I don’t think I’m quite there, but I’m almost there. I am so looking forward to when I can go, “Yeah, I’m good to go in.” I’m closer. Hopefully, really close.
Also, I’ve realized the wig makes other people feel more comfortable. That took pressure off me, but I hate that damn wig.
There was this amazing quote I saw on the front page of a magazine at Stanford, “Don’t let cancer be the most interesting thing about you.”
I was like that was for me. If I lead with it or let other people lead with it, then I’ve lost myself utterly.
Wearing a wig has helped everybody else. Here I am for a meeting, here I am sending an email, and regular things happen.
Most people would always want to ask me how I was, and I’m like, “Honestly, I’m fine and just happy to be here. Thank you, but let’s get going and not let it be all about my cancer.” I had other comments about things.
Why did you decide against cold caps?
There were 2 things. 1, they didn’t guarantee effectivity. Once I understood that they needed to be changed every 30 minutes for 24 hours, they’re really, really cold, and the pressure is on the person with you to keep changing. You rent a special ice-cold thing that keeps the next one you’re supposed to put on cold.
I just thought, “I’m not going to put any more pressure on myself or my husband to go through changing those, and if they don’t guarantee that you’re not going to lose your hair then, this is already hard enough and they’re expensive. So screw it.”
Quality of Life
Did you work through treatment?
The crazy thing for me was — and this might be other people’s reality — I needed to not go on sick leave. I actually kept working.
The weeks of chemo, I was lucky enough to work from home, and I pretty much dragged myself through my meetings and my calls. I’d put a hat on and dial in on a Google hangout.
I could do my email from my couch if I needed to, but I didn’t really distract myself through TV or reading. I just tried to move and tried to show up for work and keep it moving.
I think the economic reality for a lot of people is earning 70% of your income by going on sick leave, if you’re lucky enough even to have sick leave, is such a hit to your budget.
It doesn’t help you get better knowing that your finances are compromised. All I knew was I didn’t need that added pressure for my family.
I remember my mom and my aunt having chemo, and they were in positions where they really didn’t have careers. I just thought, ‘Well, I’m in a very resource-rich city, and medicine’s come a long way.’
I had a very supportive family, too. I had a very supportive team. My management were not very supportive, but my team was supportive.
I knew every day that I made it into the office, they would make me feel so welcome. They would encourage me and motivate me, and they did that.
I also learned to tell certain people what I was going through because I knew they were very motivational and very warm, loving people.
I picked certain people who didn’t necessarily work on my team but I would see as I walked into the office or in elevators. I let them know (about the cancer) because I’m a private person.
They would give me a hug and go, “Genoa, you’re here!” I’m like, “I know!” Knowing that I would see those people helped.
What do you wish you had known before the diagnosis?
The thing I wished I had known but I know now is that cancer is no longer a death sentence.
For any woman watching this and has been diagnosed with breast cancer, you particularly need to know that there has been so much research and so much medical progression in our type of cancer that you are already on a winning team.
Because my mother had died of breast cancer 17 years ago and my aunt struggled with it, I assumed my struggle was going to be the same, but no. It’s come a long way, and it is by no means going to kill me.
The minute I accepted it wasn’t going to kill me, I was like, “Right, I just want to get this dealt with so I can move on and enjoy my life.” That’s what I wish I had known, because I spent a lot of time freaking out.
Integrative and Eastern medicine
I did not come up with this, so I take no credit for it, but the best thing I did was go see a Chinese medical doctor who specializes in cancer and [is] an acupuncturist.
The 2 disciplines together with my chemo, I actually think I’m coming out of this probably a more whole person incredibly.
My hormones are balanced, and I feel so good about life. Do not just take a traditional approach to your treatment.
What surprised me the most was where the best support came from. It came from people I didn’t expect and I didn’t anticipate telling. But I’m so glad I did, because their support and their help.
Don’t assume anything going into this. Be open to love and support coming from all sorts of places, all sorts of unexpected places. It will surprise you how uplifting it can be.
I just took the approach, “These are the side effects. They were on the sheet they gave me for each of the drugs, so check that box.” It wasn’t until my second round when the nurse practitioner’s like, “You know you don’t have to suffer quite this much?”
I was like, “Okay, that would be nice. Is that allowed?” Silly me, I should have made a big fuss after the first round and not waited to see if it’s as bad the second round.
When the dosages were adjusted for me, it got more tolerable, then just stayed consistently the same. Nothing really changed.
You are in charge of your treatment. Ask. They can always make changes, and you’re not being a wimp. I think there’s this thing about chemo — it’s meant to be awful, because cancer is awful.
If it’s awful and you get through it, then you’re definitely going to be cured. It doesn’t have to be awful, and you don’t have to fight through it. You can still be cured. It gets a really bad rap is what I’ve learned.
Doreen’s Stage 2A IDC Triple-Positive Breast Cancer Story
Doreen shares her stage 2A triple-positive breast cancer story, diagnosed after she found a lump in her left breast. She details undergoing and recovering from TCHP chemotherapy, a lumpectomy, and radiation therapy.
In her story, Doreen also highlights how she navigated life after the breast cancer diagnosis, losing her hair, how she managed work through treatment, and the importance of keeping a sense of humor.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Be open to anything that comes to you, I think, because during this process you’ll meet a lot of people that you never thought you’d meet and have conversations you never thought you’d have.
I think you need to let those happen. Know that you’ll get through it.
Doreen D.
Diagnosis & Tests
How did you get diagnosed?
I’m not quite sure whether they were symptoms or not in terms of what I was looking for, but 2 years before diagnosis, I started to gain weight and gained almost 20 pounds.
I had gone to my doctor and mentioned to her about it. I’m pretty active. I work out anywhere from 5 to 6 times a week. I don’t eat bad. I don’t have any of those big issues, so I’d gone to her and started talking to her about that.
Her response to me was that I was just fat and if she had a nickel for every person that came in there and told her that they had thyroid disease, she’d be rich.
My response back at that point was I never mentioned thyroid, nor did I mention anything that had to do with it. I mentioned more that I was trying to figure out what was going on.
Eventually, I found a doctor who’s a little more alternative and deals with athletes. We did a bunch of blood tests, and he mentioned to me at one point that some of my markers were coming back looking possibly like cancer, but he couldn’t be sure or couldn’t tell what it would be or what that was like. Of course, that’s in the back of my head.
I was away traveling on a work trip, taking a shower, and found a lump on my breast that was kind of shattering in terms of just the fear that went through me, not knowing what it was.
I started calling doctors and the mammogram center, trying to figure out what I need to do. Trying to get my gynecologist to order the right test for me, and after maybe 5, 6, 7 different phone calls, finally got an order for a test, which ended up being the wrong one.
I had to do a little background research and find somebody else who would actually listen to me, pay attention, and order some tests for me. That ended up being another 7 days from then.
By the time they actually did the right mammogram and ultrasound, the next day I was sent for a core biopsy. Through the core biopsy, they had found something that looked aggressive and scary. They checked my lymph nodes.
At that point, I knew I had cancer and wasn’t quite sure what stage it was or how bad it was. All I knew at this point was it wasn’t in my lymph nodes, and nobody’s actually telling me I had cancer.
From that, they had started to put down on the calendar my surgeon consult, my oncologist consult, and then when they’d give me my diagnosis consult.
What were you thinking or feeling before the official diagnosis?
Nobody’s really saying I have cancer yet.
There’s no reason they would give me a surgery consult first and foremost, or an oncology appointment. The next day I was flying to Italy for one of my really good friend’s weddings.
My close friend who was staying with me knew I was going for an appointment, and I mentioned that I thought I might have cancer. She’s like, “No, you should be good. It’s probably not cancer,” She pretty much pretended like she didn’t hear that. I’m like, “No, it’s cancer.”
I got a lot of that kind of feedback instantaneously, but it was something that was in my head and something I couldn’t really talk about. I didn’t want to ruin my friend’s wedding.
The hope was if this was it, I would only have to do lumpectomy and radiation. I had all these things going through my head at that time that I tried to wipe out of it.
I think I was lucky that I was somewhere else in terms of a foreign country that I’d been to before. I could just mentally keep myself busy.
I landed, and the next day I had an appointment set up with what’s called a patient advocate at [the medical center]. She’s a breast cancer survivor, so I brought a friend with me because I knew it was probably going to be messed up.
We went into the room, there was a little bit of small talk, and I said, “Let’s not do that; let’s get down to the results of this.” I’m a little bit stressed out, to say the least.
She gave me the diagnosis. Of course, I cried. My friend cried. We started to talk about what the next steps were.
I already had my surgery consult. They definitely told me the stages, and I had no idea what that meant or how bad it was. When you look at the scale of things 1 through 4, I was a 2A, so in my mind it was better than 2B.
It had no correlation to anything, but that’s how I looked at it. I was just like, “Okay, does that mean chemo?” Then the chemo thing came out. I’m like, “I need to do chemo, I need to do this, and I need to do that.”
At that point, my advocate is like, ‘Take one day at a time. There’s a lot that’s going to come at you.’ You don’t think about it in that way. You don’t realize the enormity of what’s to come and hit you.
That’s where we sat, and the next stage after that was my surgery consult. So I think that was it. It might have been an MRI.
I can’t quite remember, but either way, there was one or the other that happened. Within that week, I had a surgery consult, I had an MRI, an echocardiogram, I had my port put in, and I met with my regular oncologist.
It was just things coming at me at all speeds in 5 days.
Describe the breast biopsy
Hurt like hell. It’s through a needle, a hollow needle almost. It’s long but not thick. They used local anesthesia.
It took about a half hour at the most from beginning to end. My mass was right above my nipple in the right quadrant, and you could feel it. It was relatively big. It was 2 to 3 centimeters.
I think there were 3 different things that they took out, and the woman that did it told me about what she was going to do. They take out the pieces of the inside the core of the cancer, and they come out in little tubes almost. They put each of those into a separate tube and do the diagnosis through that.
Chemo was the scariest word
Absolutely, chemo was the scary word because you think about stage 1 people, and not to belittle it, but it seems simple. In the scheme of things, it was just getting an operation, having a small thing taken out of you.
Then radiation, which is not fun, but it’s better than chemo hypothetically. At least that’s what people will tell you.
It seemed like a bigger ordeal because you think back to your parents’ chemo — I hate to put it that way, but before pills that would help you not puke or poop, it had to be even more miserable.
I think because the patient advocate had mentioned to me that I don’t want chemo before I left for vacation, in my mind I’m like, “Okay, if I have chemo, I’m doomed. That’s just the worst-case scenario.” Little did I know that maybe stage 4 was the worst-case scenario, but I didn’t know stages existed then.
Treatment Decisions
Your biggest questions
I didn’t know there were stages. I didn’t know there were positive or negatives for estrogen [and] progesterone. I had no idea any of that existed.
For chemo, it was [a question of] how long, because I didn’t have a gauge of what that looked like either or what that would feel like.
At first, I don’t think I asked a lot of that kind of question. It was more of, “Now, what is the plan? How do we do it? Am I going to die? How bad is it?” The simple stuff. That was where my head was at with the patient advocate.
By the time I got to the surgeon, she filled in a few more dots for me. I don’t think I knew how long or what that process was yet, but my surgeon is one of the best. I felt really comfortable with that.
She laid out things really easily. She answered any questions I had, and at that point, I didn’t really know what I should be asking.
Luckily, I have a cousin who’s a surgeon who was on the phone with me and her, so that helped a lot in terms of her asking questions and telling me about that later.
How did you choose hospitals?
I think it was decided for me, to be frank. I’m at the same place I get my mammogram every year, and my patient advocate was from CPMC Sutter Health.
When it came down to that, before I even got the diagnosis, they were setting me up with people in the network.
I just asked her who was the best and who she would go to, and she picked for me. That’s how it came about. I didn’t really question any of it.
Did you consider switching medical teams?
I didn’t even think about it, but when I met each one of my doctors — when I met my surgeon, I knew she was super smart, direct, and to the point.
Everyone in the office was great, so I had a good feeling. I don’t expect my surgeon to be warm and fuzzy. I want to be someone who’s going to be badass and get that shit out, and be as great at that as possible so that I know hands down, I’m fine.
I did do a little bit of research on the backend of anybody that knows her. I know a lot of people that work at hospitals. She’s one of the best. I was confident with that. My oncologist was wonderful.
There’s another guy that’s also an oncologist in her office who I met. I was a little bit like, ‘Hmm, I’m not sure I like him.’ It ended up being one of my favorite people.
All the nurses were amazing. I didn’t question any of that because I felt like they knew what they were talking about, and they didn’t sugarcoat anything. My communication style was more like that.
By the time I got to my radiation person, I really didn’t feel it, and I realized that I really didn’t have to be with him that often. It was once a week, and he’s the best at plotting where the rays go.
If I was going to do it again, I would probably go somewhere else. Maybe. But it wasn’t as drastic, and it didn’t mean as much to me there because the 2 people that actually gave me radiation every day were wonderful.
It becomes, “Do I want the best person I can find in the best place I can find with the best machines?” Yeah, I do.
Did you research your doctors?
I’m part of Bay Area Young Survivors, and so that group has been good to kind of bounce off who people have used. With the radiation oncologist, I had 2 names, and I sent both of them out there.
I got pretty much a 50-50 of the group liking both of them without many issues. I had maybe 1 or 2 talking about the impersonal piece, but that’s less important to me.
I usually would go on a Thursday. I wanted to have enough time over the weekend, because I worked through chemo. I’d go in on Thursday morning at 9:30.
They go in. Through my port, they’ll take out blood to check all my levels. That will be [checked] in house. All my levels will come back, and then they will figure out what they needed to do for each one of my chemos in terms of my body weight, blood pressure, and my blood chemistry.
They would put it all together in house in terms of the chemo, and it would come out in bags. I would get it in that order: TCHP.
The taxotere was the first one. It would be hung up in a bag, and I would just sit there and work from the office. I had my friends go with me. I would have one friend each time.
They would go through each one of the bags. It would take 4.5 hours total. While that was happening, I would also talk to the doctor.
My oncologist would come in. We’d talk about everything that was going to happen or was about to happen for that first one, what to expect, and what I should possibly be ready for, which was good.
I really like knowing more of the ‘tell me what’s going to happen’ because I want to be ready for it.
It’s like turbulence. If they get on the speaker and say we’re going to go through a rough patch, I’m ready mentally. That’s how that day went.
There was another doctor there, who was also an oncologist, who’d come in and deal with more of the everyday stuff like fears, any questions I have, or anything I didn’t get answered from the first oncologist.
Then they just keep checking on me, changing the bags throughout the day after that, and at the end I would go home. I couldn’t really eat during it. I would mostly drink fizzy water. That’s where my obsession started for that.
Then the first day I was fine. I could go to the gym and be okay. The next day I had a lot of nausea, diarrhea, that kind of stuff.
By the second cycle, my nausea would start as I’m getting my infusion. They started to put another chemical — I don’t know what it was — into my infusion bag so that it would help, but I still was nauseous, and diarrhea would start that day. Those were constant through the whole process. [It was] only better during the third week.
Sore throat, swallowing — that was usually the first couple of days. Then I started using Biotene (mouthwash) the day before chemo, the day of chemo, and the day after, and I didn’t have any issues with that after.
The food thing sucked. Not being able to taste food was the worst. I had super smell, and I could smell everything that would be amazing. Then you take a bite, and it was like eating bark.
That’s mentally challenging and physically challenging because you’re trying to survive. You’re trying to be productive, you’re trying to get out when you can, you’re trying to do things, and you’re trying to have as real of a life as possible. Then you can’t eat normal things.
I did a lot of protein shakes. Jello. I don’t have a sweet tooth, and now I do Ice cream became my best friend. I became an expert at that, so it’s just trying to get over that piece every week.
It was like that until the third week, when I could start to taste again. That was across the board, that one symptom. The diarrhea, fine, you deal with it. The nausea, you deal with it. I could be downplaying this for other people that that’s horrible for, but for me that wasn’t as bad.
Describe the side effect cycle
The first round for me was the worst. First and last were the worst. It started to hit me Saturday. I’d really start to feel it. It was more sore throat, which I ended up finding a solution for (Biotene mouthwash).
The nausea was constant for me, even though I was taking pill. I wasn’t throwing up, but I was nauseous. The diarrhea was constant for me. I had tons of pills for those.
Kind of feeling crazy at times. I would not know what I’m doing or where I’m at. I would have to sit down a lot. Got a little tired, and then after that, it was more of losing the memory, losing words, not being able to find them.
Getting tired, having to sit down a lot, that kind of thing. Not being able to focus on my work like spreadsheets. [It was] horrible, so I got a lot of the easier stuff to do.
But I would absolutely fly weeks 2 and 3.
I used Purell like a gun. Third week is good. Then you go back in again, and by the second cycle, I had lost my hair 2 weeks in. My eyebrows I kept until the end. Eyelashes fell out the last one.
Food became unpalatable. Probably the second cycle was when I lost all my taste. I’d lose that for anywhere from 10 to 12 days. I’d have 2 days of feeding frenzy!
What helped you physically with side effects?
Biotene mouthwash (sore throat and swallowing)
Exercise
Protein helped, and exercise helped me. Actual exercise. It doesn’t have to be anything big. It’s just moving, because I felt it moved the chemo through my body faster.
What helped you deal with side effects emotionally?
Being around friends and choosing not to talk for a lot of the time.
Sometimes it was not talking to people, not going out, watching bad television. Other times it was somebody coming to pick me up and drive me around. “I don’t care where you’re going,” is what I said to my friends.
So many people call you and ask “What can I do? How can I help?” I couldn’t come up with anything. After a while you kind of figure out what you need.
It’s like if you’re going for an errand, come pick me up. Getting into the car is hard. Getting out of the car is hard. Walking normal — hard. Thinking — hard.
But you could still be with somebody and not say anything and roll through it. For me that was huge.
Being around that community for me was enormous. Not hiding so much. I think that you have to absolutely do that. Not saying you shouldn’t hide when you need to, but as much as possible, getting out with people that are not a lot of work for you.
How did you hear about medications that would help prevent side effects?
I went to chemo bootcamp. Most frightening. That was one of my bad days. Before chemo started, they bring you into the oncology office. This nurse that’s new comes in and goes through each one of the drugs you’re taking.
She goes page by page into all these things that are going to happen to you. It’s this long list of horribles. You’d go through page 1, 2, 3, and that’s like, “First drug, here you go.”
I’m like, ‘I don’t want to do this anymore,’ and she’s like, ‘I have to legally go through it.’ I’m like, ‘Okay. So for these 4 drugs, all of these things are the same. Can we agree on that?’
I started to fast-track whatever we needed to do, and after a while I just stopped listening to her because I couldn’t handle it.
Mentally, I couldn’t get into all these things that are going to destroy my body, so I just tuned it out. That was horrible.
Then my friend took me for drinks. It was like 2 in the afternoon. We just went drinking. That’s how I dealt with that piece.
Back to the other stuff, that’s where I learned what was going to happen to me hypothetically. From there, I’m part of some Facebook groups that are for triple-positive.
I just started following threads and asked questions there. You get instantaneous answers. That’s where I found a lot of solutions to simple things, and I would just try something. If it worked for me, great. If it didn’t work for me, it was gone.
Did doctors and nurses ever give advice about side effects?
Sometimes, like the diarrhea and the nausea. That would come from the doctors, so I had special pills for those. I ended up for the first time ever buying one of those weekly Monday to Friday [pill cases] because you can’t remember shit.
I couldn’t remember the labels of anything either, and all the drugs have 2 names. There is the normal name and then the simple name, which is not simple, but it starts with a letter.
Each one of my drugs, beforehand I’d take a big marker and put “D” for Decadron and “C” for another like Colace or something. I would label them that way, and then on my notes I would just put “C” and “D” and write it out that way. I’d have a reminder in my phone as well, because chemo makes you stupid.
That’s the way I would lay those out. Those drugs were given to me by my doctor. Then Imodium was part of that, too.
When these don’t work, that will work last. But everything that the doctor gives you is much stronger than anything you can get out in the field, so I did a lot of that.
My talks with the doctor every 3 weeks, I’d say, “This is what’s working. This is what’s not working. Do we have anything else I can do?” Then they would suggest stuff, or I’d start taking things.
Then I’d email and let them know, “Is this going to get in the way of anything we’re doing? Is this good? Is that bad?” They would instantaneously pretty much get back to me in a day. I was lucky I had a good team.
What was the response to chemo?
I had a complete response from chemo, which means that they couldn’t find the lump by the time I was ready for surgery and had an echocardiogram.
I had 2 echocardiograms and 2 MRIs in that time of my chemo to look and see where we’re at in both of those stages, in terms of my heart and also the size of the tumor. There were scans before chemo, during chemo, and before the operation.
Doreen’s Video on Surgery Prep & Recovery
Surgery (Lumpectomy)
Preparation for the guided-wire biopsy
I had to do a needle biopsy first, called a guided-wire biopsy. That setup [was] horrible. No way to sugarcoat that. The day before, the night before you go in, they put this tiny needle into your nipple, and that hurts!
That lights up the stream for where the cancer would flow into your lymph nodes. From that, they can tell what lights up, and that will be what they take out.
For me, you could see it on the screen. They showed it to me afterward: 3 of them lit up. The next day you know they’re going to take out at least 3 when they go in there.
That doesn’t mean they’re cancerous. It just means they’re lit up, and that’s the path the cancer would travel if it’s traveled, which is scary when you think about it.
Describe the actual guided-wire biopsy
The next day you go in, and the needle-guided wire is what they need to do next. They gave me Valium because I was stressed out, and I’ll take a Valium any time they offer it when I’m in the hospital.
We went downstairs. The 2 ladies that were in one of my tests along the process were the same ladies that were doing this. I think they were the ones that did my core biopsy, actually.
They put you in the mammogram machine, which crushes your boob. This time it was sideways, so it was more like this, because my cancer was on this side. They numb it a little bit, but not enough is the thought.
Then they put this paper-thin wire into the spot where your tumor was. You can see that happening all while you’re doing it, so you’re looking at a screen watching a wire go into your boob, feeling the pain of that first and foremost.
When they take that out, the wire is still stuck in your boob, so you can look down. I’m like, “Can I look at it?” They’re like, “You sure you want to see that?”
I’m like, “I absolutely want to see it because it’s hopefully a one-time thing.” There’s a little wire that goes, and it came out to here. They ended up taping up and putting on my boob.
The lumpectomy was next
I went in for surgery. That was the best part because I get to sleep for that. There’s not a whole lot of talk. I just went in, you lay on the table like Jesus, and then you’re out.
I didn’t stay overnight. It was a 1-day surgery. Once I was fine, I left. They told me that they got all the margins and there was nothing in my lymph nodes.
From there it was just rehab. I slept a lot that first day, but since then it’s been more rehab in terms of arm mobility, physical therapy, that sort of deal.
It wasn’t a mastectomy or anything like that. It was small and disappeared pretty much [after chemo]. I didn’t have to worry about that.
Because the lymph nodes were clean, I didn’t have to worry about anything after that either. Both of those pieces very lucky. Just a lumpectomy. I didn’t have any of the history either, so I didn’t have the BRCA gene.
Doreen’s Video on Radiation
Radiation & Side Effects
After surgery you had radiation
I think it was a month or a month and a half at most. So 6 weeks is probably max. I started going to get the setup probably at 4 weeks. I met my radiation oncologist. I learned what was going to happen. I found out how long I would have to go.
Then they tell you whether it’s a full boob or just partial spot. I had full boob. I think I didn’t grasp what that meant or anything. All my big questions were more about my heart and lung because it’s on my left side.
They talked about how the plotting works, and I still don’t grasp the understanding of the technical piece of it, but I was lucky I only had to go for 4 weeks.
If I had to go for as long as they initially thought (8 weeks), I don’t know if I would have survived as well mentally and skin-wise.
Describe the radiation process
There’s an initial meeting that talks about what they’re going to do, what it’s going to look like, and how they’re going to plot it out.
Then they go away and plot it out in terms of the different layers of radiation, how close it’s going to get to where they need to go, and which angles they’re going to take with the beams to be able to hit it the best way.
You go back after that, and they do a setup for you. You get into a different machine. They tattoo you, and that’s going to line you up to everything in the room so they can get you in the exact spot that they need to.
That morning you start, you go in, and it’s probably 30 to 45 minutes. They get you in the right spot, they take pictures over and over again, and then they finally radiate you. For me I had 3 on one side, 3 from the other side.
You lay down in a huge machine. They prop you up, which is kind of funky. I didn’t realize that until you kind of look around, so you’re off the ground probably 4 feet, 4.5-half feet.
There’s a machine behind you that’s almost like an MRI machine that comes up and around over you. When they’re doing films, there’s a bounce board behind it, so they’re both coming out and around you. It’s pretty much showing your boob to everybody.
I have a gown on my right shoulder, and it goes down to my waist. They put a blanket on me up to my waist, and that whole part is open from there.
You look up, and there are lasers in the ceiling. There’s lasers to each side of you. Then the machine has lasers. Then there’s lights that I can see that will tell me when the laser’s on and when it’s not on.
Also, I have a box taped to me, too. I don’t know what the box does. I think it was more of the measurement of where my breath was. Once that hits a certain level, that’s when they can radiate me.
What were the biggest side effects from radiation?
In the beginning, everyone tells you that radiation isn’t as bad as chemo. I personally hated radiation, mostly because chemo was something I could manage and work through, and it was rational thinking for me.
Radiation was every day, Monday through Friday, 5 days a week for 4 weeks. It’s not very long.
For me, I had to hold my breath during radiation to be able to push my boob up high enough that you’re not hitting any of your lungs and heart, so of course now you have that in your head as you’re doing the radiation of, “It’s going to ruin my lungs. It’s going to hit my heart.”
Then the machine is imposing. It’s enormous, it goes around you, things are coming from the ceiling, and the people that are techs helping you are running out of the room while you’re sitting there.
It’s just danger. Danger, but you’re still on that table. You’re the one being affected by it. For me, that mental game was a lot harder. Then when they lay you out, they marker you.
Mine was from underneath my underarm up to my chest bone, all the way down underneath my boob, and I didn’t realize that whole piece would get red.
I just didn’t think about it till week 2. I started getting really red there. It’s a constant burning that doesn’t go away. Now I have the incision underneath my arm, which is now burning along with the rest of my boob and my nipple.
You put on lotions every night, every day. Then you have to wash all that off in the morning, because you don’t want it on there when you go in. It’s just a game of constantly being sore and red like a full-on burn.
It wasn’t fun. It was mental, and it’s physical because of the burning. Then there’s the other piece of being exhausted. You hit a wall. I was more exhausted than I was at chemo.
You had to go to physical therapy
I worked out after. I didn’t do a lot, but I’m an idiot and had fluid on the incision for the lymph node biopsy that started to build. It got more and more pressure, so it ended up being 80 ccs of fluid, which is apparently a lot.
They had to go into the scar and drain that. Another needle process, which is not fun. 7 on the Richter scale. I had to have that happen twice to me.
The first time, it was probably because I was working out. Second time because the pocket’s there. They had to drain it, so I had those 2 things.
With the actual lumpectomy, no issues. It’s right around my nipple. But the most problems I’d been having is with the actual clot underneath my arm. That stops any mobility overhead, and then it started to cause some tightness through my peck. On top of that, then you add radiation.
Radiation also tightens all of this. The mobility becomes worse once radiation starts. I started radiation a month after surgery.
You still had to get infusions after radiation
After radiation ended, I went for my infusion. I was still getting infusion of Herceptin and Perjeta because my chemo is estrogen- and progesterone-based.
It’s fueled by estrogen, which we naturally make in our body, more so as females. Now that just blocks it. It was part of my chemo the whole time.
It was the last 2 that I would do. It’s a “non-chemo chemo,” is what I call it. I do that every 3 weeks until end of September.
How long will you take hormone blockers?
Because I’m not menopausal yet, I don’t know if that’s going to kick me into it. I take a pill for 5 years or until menopause, and then they give me another pill for another 5. So total of 10 years on hormone blockers, which should kick me into menopause.
Those will be every day for 10 years or until something better comes around. I’m trying not to go down the Google path of that yet. because everything I read about tamoxifen is horrible.
I’m hoping maybe something will come out better in that 10-year period that won’t be so damaging to my system.
My hair was down to my waist. Big, Italian hair! Not big-big, but I have a lot of hair. Thick eyebrows, eyelashes for days, that kind of thing, so yeah, it’s a vanity issue.
I worked out. I didn’t want to look as manly; I guess that’s the best way to put it. It makes me more feminine, I thought. That has always been my thought process around my hair.
That could be a security blanket. At this point, it doesn’t bother me anymore because I’m so used to it, but it was huge.
Losing your hair and that whole process around it, it’s a big one. That now shows everybody you’re sick. Whoo. That was big.
When I had gone into my first chemo, I started talking to the nurse who was giving my infusion, and I said, “What do you think? When do people normally lose hair on this? Because everybody has a different cocktail.” I did the whole WebMD and every single site and looked at when you lose it. Of course, they were saying quick.
Other people were saying not so quick. She had told me 2 weeks. That frightened me because that was quick. I questioned it, then she moved to maybe a month. I asked her to tell me the truth, and it ended up being 2 weeks.
What motivated you to finally cut it the first time?
That first week, I had my hair in a ponytail, and then I brushed it a little bit. Second week, my hair started to fall out in the brush, so I stopped brushing it. Put it up into a hair tie.
I’d wake up, and there’d be clumps of hair in my bed. Then I’m like, “Maybe if I don’t touch it, it won’t fall out.” It just looked horrible, so at a point, I was talking to one of the owners of my gym. He’s like, “Fuck it, I’ll just shave your hair.”
I’m like, ‘I don’t know if I’m ready for that.’ It was almost 2 weeks. Then I went home, and a big chunk fell out onto the floor. I texted him. I said ‘All right, let’s do it.’ He said, ‘I’ll bring my clippers in, and we’ll do it.’
I let my friends know I’m going to do it at the gym. This is the time. Probably 10 of my friends came. The guy that was initially going to do it didn’t do it. He wasn’t there, so I looked at one of my other friends, and I’m like, “How are you with clippers?”
He’s like, “I’ll do it.” Great. [We] went out to the patio porch and started with fun hairdos — mohawk and half my head — and then just shaved the whole thing and had a couple beers.
Just shaved it. It was probably a little bit longer than what it is now. It was probably what they call a 4-clip. That was 2 weeks in.
When did you shave it all?
From there, it started falling out more and more. By week 3, one of my other friends came over and shaved my head for me. That was it. I went completely bald.
I still had really big eyebrows and eyelashes, so I just bought a lot of earrings with my girlfriend, Elise. We went out and bought some cheap hoop earrings, and I just rocked it.
I work for a tool company for construction, and 4 guys in my office are bald. I have to walk in now one day with hair and the next day bald. I started taking pictures with all the bald guys at work.
It was called ‘Project Baldy.’ Any time I travel out in the field and guys are bald, I’d get another picture and get another picture. I asked advice for shaving heads, and that’s kind of the way that I dealt with it mostly.
Describe the emotional part of hair loss
It’s more the sick part, I think. Right now my hair is short. It’s not what I want, but it’s cute, and I’m cool with it because it feels like I’m doing this intentionally.
Being bald puts you into this whole other place of being the sick person, and that just makes me feel less viable.
I just don’t want to feel like the sick person. I don’t want to feel like that weak person that’s gonna die. It puts you that much closer to being what you don’t want to be.
It’s not even the imagery for anybody else. It’s the imagery of yourself looking into the mirror that’s so bad. It’s horrible seeing that and trying to figure out how do I make this me? You’ve just lost who you are right there in one second.
Everything you’ve seen yourself to be is gone. You’re still there, but it’s not who you imagine yourself to be. It’s bigger than dressing up for Halloween.
It’s like not many people put a bald cap on as a female. It’s not cute. Everything you’ve ever been told is never that.
I think the good part was for me was embracing it and just, “This is who I am now.” Finding ways to make it fun.
You had to learn how to draw in your eyebrows
I’m so not “chicky” either. I went to Sephora. There’s this one girl that did a really good job with her eyebrows, and that was what I was focused on.
I’m bald and looking at her eyebrows. She’s looking at me, and I’m like, “Can you help me?” She’s like, “What do you need?” I told her I needed eyebrows and needed them to look good.
She brings out this stuff, and I’m like, “You need to show me how to do it. I don’t want you to do it for me. I want you to show me how to do it.”
She spent so much time with me. [She] taught me how to do it. [It] was amazing. I gave her a huge hug at the end and have been doing it ever since. Hopefully the eyebrows come back, but right now it’s not as important.
Your hair hurt as it fell out, especially your eyelashes
Yeah, itchy. My head would get really itchy.
The worst part was my eyelashes. My eyelashes hurt a lot when they were falling out. You wouldn’t think as small as they are that they’d be as painful, but it was like little spikes.
Did you wear wigs?
They have a bunch of free places that you can go to that they’ve donated wigs, and of course they’re granny wigs. Horrible, horrible granny wigs. I did the whole “mom” style. Really short, blonde — and I’m not blonde at all.
I tried on afros and all sorts of stuff. I ended up with one big, huge for-real afro that I thought I would wear out one night for fun. I didn’t. I brought it back.
I tried to find anything that would look like me. I went to even nicer places. Beautiful wigs. I just never felt like myself, so I just never did it because of that.
Itchy. Hot. It was too much work. I ended up wearing scarves around my head. Luckily, it was winter, so I wore a lot of big scarves just kind of over half my head. That was fun.
Did you try cold caps to save your hair?
My stuff started to fall so fast. I talked to the lady there. It seemed like a lot of work. You have to have somebody with you for a couple hours beforehand. Then hours afterward. It was so expensive.
If I spend $2,000 over the time that I’m doing this to save my hair, it seems stupid, vanity-wise, for me.
Other people have done it, and good for them. But I’d rather take that $2,000 and go on vacation when everything’s done. That’s what I did. Hawaii!
Work & Finances
Doreen’s video on working during treatment
Did you work through chemo?
When I was diagnosed, I called my boss right away when things looked funky.
I said, “Look, I have some stuff going on. It doesn’t look good. I’m not sure what that means yet. It could possibly be cancer. I’m not sure, but I’ll let you know when that happens, and we’ll talk about what that looks like.”
When I was diagnosed and had my full plan, I called him and said, “This is what’s going to happen. This is how it works. These are when it’s scheduled. I’d like to still work through it and see if I can do that, because I think keeping busy is going to be better for me than wallowing and thinking about cancer all the time.”
That was my thought process. I have 2 jobs, and it was like that for both. My other job is at the gym at night, so that becomes another piece of the pie. How do I stay awake for that long? Can I handle it for that long?
My gym was amazing in terms of that and said, ‘Any time you need coverage, we can do that.’ I used that as much as possible, but I also used the gym as a place that would keep me involved, keep people on me, and keep people seeing me and helping me mentally.
I would work out with them and teach them. I could teach from seated position if I needed to. I spent a lot of time sitting down and talking to people from there or getting up, walking over, helping them, and sitting back down.
But I had desk work, too. For my desk job during chemo week, I’d work up until the day of chemo. From chemo, I would work from there, so I could just do emails and phone calls during chemo. That was perfect. Then that Friday I was usually pretty clear, so I could do that and work.
The week after I couldn’t fly, and I couldn’t be on the train or anything like that, so I’d work from home during that week. Then that following week I would fly.
I would get on the plane. I would wear a mask, and I would fly places. I wouldn’t fly any more than 2 hours. That was my goal. As long as my white blood cell count was fine, I was free to do that.
As time went on, I would be able to do it the second and third week. I could keep things together; I could answer emails. I could do my work, but I couldn’t do anything super detailed. Looking at Excel spreadsheets took me really long periods of time to focus.
I was pretty open with the people that I worked with, like, “I can do this, but I can’t do this. If you could take this for now, I can work on this for now.” I picked up a lot of the smaller stuff, the less-detailed stuff, the busy work. That was good.
Once I could travel, I didn’t have to do a lot of that busy work. All I had to do was be supportive and helpful and be able to come up with things in my head. I would mostly write those down or know them pretty well.
Did you work through radiation?
I did not work through radiation.
I worked through my first week of radiation, and right now I’m on disability. My disability is 2 months total.
Now, I’m starting to heal and be able to stay up later than 8 at night. Usually during radiation, I would sleep probably at 11 p.m. and take a nap.
Then I would pass out narcoleptically around 8 p.m., then wake up at 2 a.m. and be up all night. There are different cycles of not sleeping and sleeping.
How was dealing with insurance during treatment?
I have a high deductible. The low deductible insurance was more money in the long run because people apparently don’t use all their insurance, shockingly.
[For] my insurance, I had a full all-in from September to December. I spent about $20,000 on top of my insurance, so that’s pretty shitty because that’s including what I pay for my insurance monthly.
That was my partial deductible. It falls into this co-insurance, and that was also all out-of-network. Out and partial was $20,000. So now that reset in December.
Through my work we deal with a company called Compass. I would send all my bills that I paid to the lady at Compass, and she would go and check them. Things that had not been marked off, she would deal with.
I had a lot of confusing back and forth with her. I think partially because they’re confusing and partially because the insurance companies are confusing.
A piece of it was I couldn’t focus because of the chemo, but it all worked out in the end.
Mental & Emotional Care
What were hard parts of cancer you didn’t anticipate?
I think the hardest part about cancer is that in the beginning at least, it’s not about you. It’s about everybody else.
It’s like trying to make them feel comfortable. It sucks, and it’s lame. People are shitty sometimes. The death stories and the stories about people they know who have died of cancer, the rambling of stupid stuff.
That was the worst part. I think the baldness is less of that, but it opens up the door for random people to start telling you cancer stories and death stories.
I started getting a little bit East Coast on them. I would have conversations with people who’d start stories, and I’d be like, “You’re not telling me a death story, are you?”
That whole baldness brought out a lot of that stuff.
Did anything surprise you?
A lot. Everybody says this, but there are people who stick around, and there are people who go away. I was surprised by the way people deal with it and make it about themselves.
I’m surprised that random strangers who have come up to me, mostly good in terms of seeing me, seeing me bald, knowing what’s going on, and directly asking me if I have cancer, which is strange.
I’m surprised by how encompassing it is. A constant. There’s not been in 9 months a week that I have not had an appointment. Still going through that.
That’s a lot. If I knew that before and people told me that, you don’t understand the enormity of it.
A sense of humor is important
You have to [make jokes]. You have to. When people see me drinking and say, “Should you be doing that?” I’m like, “What’s that going to do? Give me cancer?” Then they get all awkward.
The best thing my oncologist told me — I think it was in cycle 5 of chemo — she’s like, “You need to use your cancer card.” I was like, “I don’t know. It just doesn’t seem like I should.”
She’s like, ‘No, this is the time. Use your cancer card.’ I’m like, ‘I don’t even know what that means.’
She’s like, ‘Use it when you need to get out of things, or you just need something and you’re not getting it, or just use it. Use the cancer card.’
Any advice to people who’ve just been diagnosed?
Use all the things. Anything that’s been suggested in terms of free services or trying things out. Try everything. See if it fits for you.
Don’t just listen to people. I think you have to make your own decisions. And cry at will.
I don’t care about a lot of stuff anymore. Not as important. Like, eh. I eat what I want. I drink what I want. I’m not worried about those things yet.
Be your own advocate
You have to. If I hadn’t pushed on along the line, it would be bigger and worse. I had already been diagnosed, and I’d already started chemo when I got a call back from the secretary of my [original] gynecologist’s office, seeing if I wanted to come in for a mammogram.
I’m like, “Have you not seen any of records that were sent to you? Because of you guys, I had this, this, and this happen to me. And I have breast cancer. I think you guys should know that you did not help me in any way. In fact, you were a block to my health care.”
Another example is there was this shot. It was something different. It’s a shot that they were going to add to my regimen that would make you horribly poop. It was going to be explosive diarrhea.
I did all this research at the end, and I said, “Why do I have to do this? These are all the side effects. How is that going to help me if it’s a 1% chance [of helping]?”
We started a debate back and forth, but for me it was more of the I’d hear it, then I’d sit on it, sit on it for a couple weeks, and come back with it. I needed to absorb it first.
As long as you’re thinking about it, coming back and talking about it, and you’re getting the response that you either need or the response that at least makes you understand a little bit more, then I think you’re okay.
But if you’re not getting that, you need to seek it elsewhere. Do it.
Be prepared for the sudden drop-off in care and attention
That shift is hard. It’s like, bink, you’re done, and there’s less care, which is weird. I feel better that I’m not that important, right? It’s a double-edged sword of it’s cool, but it’s hard.
Another thing I guess I didn’t realize for myself is that I now am a lot more open about talking about things than I ever was, because people along the line would ask me questions about cancer in general or how I’m doing and that kind of thing.
Before, I’d just be like, ‘Yeah, I’m fine.’ Just throughout the whole process, I would tell people, ‘This is how I feel. This is what it feels like. This is what’s going on. This is why I’m in the process.’
Draw boundaries with people
I didn’t draw boundaries that made other people feel comfortable after a while. At first, it was like I realized it was all about them, and it had nothing to do with me.
Then I stopped getting into those conversations with people. The conversations I had as I got through more were more for my benefit.
For me to think about stuff, it was less about making other people feel comfortable. I think it was an interesting shift. I don’t know when it really happened.
You’ve got to feel that out for yourself. Everybody’s got to go through whatever’s comfortable for them.
In her story, Stefanie also highlights how she navigated the hair loss post-chemo, how she approached work during treatment, and the impact of the breast cancer diagnosis on her marriage.
If my cancer is the worst thing I go through in my life, I’m very blessed.
I know there are people who have had it way worse than I did with cancer and otherwise.
I just tell myself what I’m grateful for all the time. I have my family, and there’s people out there who don’t have that. I just try to count my blessings.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
I was pregnant. I gave birth on October 4th, so 2 days before I found out everything. I found a lump in my breast while I was pregnant.
I was 5 months along when I noticed it. I was usually in and out at my appointments, so I brushed it off and thought it was a clogged duct. I just didn’t think anything of it.
After I gave birth, one of the postpartum nurses said, “You have a lump on your breast.”
I said, “I know. It’s a clogged duct, and it’s gonna go away when I start nursing.” They did a sonogram that night, and my OB/GYN felt horrible for me.
I look back, and I think ignorance is bliss in a way. It’s a blessing that I didn’t know about it during my pregnancy, because I would’ve stressed out. My doctor said if I had found out when I was 8 weeks pregnant, there would’ve been other options, and who knows what I would’ve done.
The way it worked out for me was okay. I’m not saying it would work for everyone, but it worked for me.
How did you get the diagnosis?
They did the sonogram on the night I gave birth. They did a biopsy the next day since the sonogram was inconclusive.
They told me I could call on the 6th for my results. I was still inpatient from giving birth after my scheduled C-section.
My husband was working because I told him I was going to need a lot of help when we got home, so I wanted him to be working as much as he could until then.
I was alone and called the radiation department. The doctor said, “I’m so sorry. You have cancer.”
I got out of the hospital the next day, but I was just ready to go home right then. I wanted to crawl into my bed and forget this was happening.
Originally, I was going to do my 4 rounds of AC and 12 rounds of Taxol and Herceptin. Then we were going to do surgery. We decided on a lumpectomy, especially because my little one was so small.
My surgeon said she was confident she could get it all, so that’s what we were gonna do. You make plans, and God laughs.
My ejection fraction was really low at one point, so they had to stop my Taxol and Herceptin. We did the surgery early. Because I had to stop chemo for a while, she said they were going to go ahead and operate.
That gave my heart some time to rebound. It did bounce back. I was under the care of a cardio specialist.
What was your chemo regimen like?
I had AC every other week. Then I did 12 rounds of weekly Taxol and Herceptin. The first chemo was terrifying. It was the scariest thing I’ve ever experienced.
That’s when everything became real for me. You see all these people already well into their treatments, and you see what you’re going to become.
They hook up to this bright red bag of chemo, and it’s so scary looking. They have to tell you all the potentials of what could happen. They have to tell you all the possible wors- case scenarios, and you’re sitting there wondering if it’s going to happen to you.
I had a 6-year-old and a less than 1-month-old at home. I had a lot to worry about. Luckily, I had the nicest nurses. As scary as it all was, I knew it was going to be okay.
What side effects did you experience from chemo?
I was fine the day after infusions. The day after that, I felt like a train hit me. My bones ached, I couldn’t hardly function, and I was nauseous.
They had given me anti-nausea medications, but I felt fine the day before, so I didn’t take them. I learned very quickly that even if you’re not feeling nauseous, you should still take the medicine.
I would be tired and need a day to recuperate, but then I’d be okay. It wasn’t so bad. I felt so much better on the Taxol and Herceptin than I did on the AC.
I had some fatigue and diarrhea a couple of times, but other than that, it was so much easier. My hair started growing back during it, which I was not expecting.
They did a lumpectomy and lymph node removal on January 27th. I had a revised lumpectomy the following week because they didn’t clear the margins the first time.
I told her, “If you can’t clear the margins after this, just give me a mastectomy.”
At that point, I just wanted the cancer gone.
I was thinking, “You just need to get this over with.” They told me they weren’t sure about my lymph nodes when I went in for surgery. They said if they wound up needing to take them, I would wind up having to stay overnight in the hospital.
I was sad about needing to be away from my kids. I was nervous and wondering what was going to happen. At the same time, I was confident in my surgeon and knew they were cutting out what they could.
There was part of me that was just glad we were doing something and glad to be there fighting the cancer. There was another part of me that was nervous and just wondering what was going to happen.
I ended up having to stay overnight. Calling your little kid and telling him you’re not going to be home that night is terrible. Not being able to hold your baby is one of the worst feelings in the world.
I remember waking up from surgery, and my surgeon being there hugging me. She told me, “It’s good. You’re done. It’s all over.” She’s amazing.
I wasn’t in any pain when I woke up, thankfully. I had a drain, and I didn’t like that. That was a little uncomfortable. I wasn’t happy about having to stay overnight.
My husband would probably tell you I was argumentative because of that. Once I calmed down about that, I was okay.
They were giving me Tylenol intravenously, and that worked really well. They told me I was going home the next day. I just kept that in my head, and that’s what helped me make it through.
When I got home, everybody took a turn to come and stay and help me. I couldn’t lift anything because of the lymph node removal. My best friend came and stayed for a day. My grandma, my aunt, and my husband took a day off, and everyone was just so wonderful.
It really did take a village to get me through all this. I’m so lucky to have my village. I can’t imagine going through what I did without my family.
You had more treatment after surgery
After surgery, I went once a week for 9 months to get Herceptin. It’s really nothing compared to the other chemo I was doing. At that point, I was feeling so fine that it was mostly just an inconvenience.
Describe the radiation therapy
I also had 30 rounds of radiation. It was horrible. It’s not because it’s painful. I did get a burn, but that’s not why it was horrible. You don’t feel it while you’re getting treatment.
It was just an inconvenience because you have to go every single weekday. If they’re backed up, it just takes forever. The treatment itself isn’t long, but the wait times could be terrible.
I wore wigs for a little while. I stopped pretty early on, though, because they’re annoying and itchy. I don’t care how nice it is; it’s still a wig. I was more comfortable not wearing anything than wearing a wig.
My kids were so used to me being bald, so it was fine for me. Their friends came over one day, and they were horrified by my bald head. I had to apologize profusely, and of course, I was crying.
I hated that my kids’ norm was mommy not having any hair. That shouldn’t be normal for any child.
Did you work through treatment?
I went back to work in December in between getting AC and Taxol. My job let me take off one day a week for treatment when I started Taxol.
I’m a teacher, and at that point, I was teaching special ed pre-school, so that wasn’t easy. I was grateful my job was accommodating.
I enjoy routine, so going to work was a break from reality. It was 6 hours a day I could not think about cancer and just do my job. In a way, I think that helped get me through it.
How did cancer affect your relationship with your husband?
My husband and I already had one son. We got married and had a baby right away. That wasn’t the easiest road, and we have our own notions of how things should be.
I’m opinionated and high energy. He’s more passive and quiet. We’re complete opposites.
My husband was terrified in the beginning. We just had our second baby, and here his wife is with a cancer diagnosis. He didn’t know what was going to happen.
He did everything for me despite being scared himself.
Anything I asked of him, he did. I couldn’t have asked for somebody better. He wasn’t singing from the rooftops about how amazing I am, because that’s not his style.
He was just so supportive. He kept it together when I couldn’t. The laundry was done, the kids were fed, and everyone was where they needed to be.
Looking back, I realize how important it was to me that he took care of those little things.
I had to learn really quickly that I couldn’t do everything I was used to doing. I wasn’t able to make lunch or get my kid on the bus.
I was tired. I just had to resign myself and realize when I couldn’t do things.
Emotionally, it took a toll on me. I cannot imagine leaving my children without a mother. Especially the timing of my diagnosis.
I went through a moment of “why me,” because we had a newborn baby. It was just terrible. I heard the best sound of my baby crying and heard the worst thing you can hear 2 days later.
I have my mother, and I know that everyone would step up and do what they had to do, but it’s not the same. Those are my kids. They’re everything to me.
I asked my doctor right at the beginning, ‘Am I going to die?’
She looked at me and said, ‘No, you’re not going to.’
I’m so hypersensitive to my body now. Any little thing can alert me. I live with a little bit of fear. I remember in the beginning thinking, “I don’t want to go through that again.” I really don’t, but I did it once. I know I could do it again if I had to.
Now, I’ve settled down. There are days where I forget I had cancer, and there are days when it feels like it was yesterday.
Every day is different for me. I can go days without thinking about it. I feel compelled to share my story where I can.
If my cancer is the worst thing I go through in my life, I’m very blessed. I know there are people who have had it way worse than I did with cancer and otherwise.
I just tell myself what I’m grateful for all the time. I have my family, and there’s people out there who don’t have that. I just try to count my blessings.
What advice do you have for someone who has just been diagnosed?
Stay positive even on your worst days. Try to find something to be grateful for, even if it’s the littlest thing. Don’t be afraid to lean on other people for help. Somebody set a meal train up for us, and that was amazing.
Don’t feel embarrassed about accepting the help someone is offering you. Take the help. Don’t be afraid to ask for it either.
In her story, she highlights how she was able to mentally and emotionally process diagnosis and treatment, managing through hair loss, and how her children dealt with the cancer experience.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
We laughed a lot. We found joy in moments.
At one point, Logan (my oldest son) found my fake boob in my car. He held it up and goes, ‘What’s this?’ I was like, ‘It’s my fake boob, son.’ He was like, ‘Oh my God, oh my God, oh my God!’
It was like a hot potato. There were moments like that, and they were just funny. Stuff like that was a byproduct of the cancer, but we have to laugh about it.
Callie M.
Diagnosis
How did you know that something was wrong?
4 months before I was diagnosed, I noticed a little change in my breast. The top part had dimpled just a little bit. It was really minor. You really wouldn’t have noticed it unless you knew.
My husband had said something to the effect of needing to keep an eye on it because it could be a bad sign.
I brushed it off because I was young, and I had a lot of experience with cysts in my breasts. They had never come back as anything. I wasn’t super concerned about it.
My husband worked nights at that time, so it had been a significant amount of time since we had gotten ready to go somewhere for a date.
We went on vacation for our anniversary. While we were on vacation, I was getting out of the shower in our hotel room, and my husband looked over. He’s an RN. He said, “Oh my gosh, that has changed a lot.”
I had noticed it, but I wasn’t super worried about it. He freaked out, though. He looked at it really close.
We noticed there was a bulge underneath the dimpling. He was scared about it. He didn’t think it was a cyst.
We went to the doctor, and I knew there was something wrong when my primary care saw it. She didn’t say anything, but she said she needed to get me scheduled for a mammogram and ultrasound as soon as possible.
I could tell by the way she was looking at me that she thought it was cancer right away.
When I went to get the mammogram 2 days later, the radiologist came in and looked at everything with the technician.
I knew that meant there was something they were looking at. He said, “I need to talk to you after you get dressed.”
How did you get the diagnosis?
He came in and said, “Your mammogram was a category 5.” I didn’t even know they categorized them. Category 1 would be totally normal and shows nothing of concern, and a 5 is very rarely given.
That means they can see the cancer on the mammogram. He showed me a picture of the mammogram and said, ‘See these white dots? This is highly suspicious of cancer.’
He got me scheduled for a biopsy a week later.
What was the needle biopsy like?
It was weird because my tumor was big for a breast cancer tumor. You could actually see it with your naked eye because of the way my breast bulged.
When they went in with the needle, it bruised really bad. They go in with a tool to mark where they’ve pulled tissue out, and it sounds like a staple gun. It was so weird. I had a little bit of a freak-out hearing that clicking sound.
How did you react to your diagnosis?
I had always been very aware of my breasts. My maternal grandmother died of breast cancer at 35. My mom was 10. My mother has never had any issues, but I’ve always had abnormal results of some kind.
Ever since about age 28, I get flagged for a mammogram. I’ve always felt like I had weird breasts that produced cysts. I had really dense breast tissue.
It was probably not as far of a jump for me as it would’ve been for someone without that family or medical history.
It was kind of a process for me. My dad passed away in 2016 from lung cancer. I was very involved in his process from diagnosis to treatment.
I had kind of been in this cancer bubble a year before. My first reaction was, “Here we go again.” I also had a little disbelief. I was only 38.
I called my mom. Then I called my stepmom because I knew that of all the people, she had been on the journey with me with my dad. She knew that I knew this journey was going to be difficult.
I met with my surgeon, and he told me my tumor was very large for a breast cancer tumor. He told me I had options, but you could tell he thought the mastectomy was really the only way to go.
He said he just felt like we needed to get it out before it progressed any further. We decided to do the surgery so I wouldn’t have to do radiation.
When I got to the hospital, I met with my surgeon. I was nervous. I hadn’t even met my oncologist or nurse navigator yet.
I had a bunch of questions I wanted to ask and didn’t have anyone to ask yet. I was super nervous because I had never had a major surgery like that.
Describe the mastectomy recovery
I spent 1 night and almost 2 full days at the hospital in recovery. It took me 4 full weeks at home to recover from the surgery. I had drain tubes in the whole time. It took the full month of May. The recovery was pretty long.
The mastectomy process totally knocked me on my butt. To me, it felt like major surgery. I really had a hard time recovering from how bad it hurt.
I was exhausted all the time. I think a lot of that was mindset because I was still in my ‘I have cancer’ bubble.
I have lymphedema from them removing lymph nodes. It’s not horrible, but it’s something I do have to take into consideration in my life.
I did physical therapy for the whole month of June just about. I have limitations in my mobility. It’s so amazing what you use your arm for that you don’t realize until you can’t.
Chemotherapy
What was your chemo regimen?
My regimen was ACT: Adriamycin, cyclophosphamide (Cytoxan), and Taxol. I did Adriamycin and Cytoxan together for 4 rounds at 2 weeks apart from early June until the end of August or so. Those were hard because they caused a lot of nausea and vomiting.
Adriamycin is also called the “red devil.” It wipes you out for sure. I lost my hair and eyelashes. Then in August, I had a month-long period where I couldn’t get chemo because I went septic.
They think I had a bladder infection, and I had no white blood cells hardly because of the chemo. The antibiotic they gave me to fight the infection caused me to crash.
My kidneys started to shut down. There was a week or so where it was really bad. It was scary.
I was being monitored constantly. I had to get a blood transfusion. My blood numbers went really wonky. They would fix something, and then that would cause something else to go wrong.
Then I had 12 weeks straight of Taxol. I went in every week, but it wasn’t as serious. It made me really tired, but it didn’t wipe me out like Adriamycin. The fatigue was pretty bad.
What side effects did you experience?
Nausea, vomiting, fatigue, and chemo brain. I definitely had some continuation of thought issues. I was very scattered. I think that was a result of the chemo, because the further I’ve gotten from that, the better that’s gotten.
My nurses were really proactive about preventing mouth sores at the cancer center. I didn’t have any issues with that, thankfully. I did have some dryness issues, though, in my nose, mouth, and pretty much everywhere.
I was constantly putting on lotion, using lubricant in my nose to stop the nose bleeds, and my mouth is still pretty dry to this day.
One of the big side effects you can get is neuropathy in your hands and feet. I wore these cold gloves and socks during infusions, and I never experienced any there.
I did have some neuropathy in my legs, but it was nothing like I’ve heard other people describe.
I was really nervous about the reconstruction. I met with the plastic surgeon. It’s a 3-part surgery. The first part of the process is putting in the expander so they can put the implant in to recreate the breast you lost.
When he first told me, it sounded like no big deal. When I met with him again right before, he said it was going to be similar to my mastectomy. I felt like the mastectomy knocked me on my butt.
I had my first surgery on January 31st, 2019, and it hasn’t been too bad. I would say the pain was as bad as the mastectomy, but the recovery didn’t last as long. They reopened the whole mastectomy scar to put the expander in. It was pretty major.
Starting in a few weeks, he’ll go in and start putting fluid in. It’ll take him about 2 or 3 months to get to the goal amount. I’ll go in every 2 or 3 weeks to get some fluid added.
Then in May, I’ll have the second surgery, where he’ll actually go in and put the implant in. I’ll get one on both sides so they look the same.
In September, he’ll go in and fix the area at the top of my right breast that is sunken in from where they took so much tissue.
Reflections
How did you mentally and emotionally process the cancer experience?
For me, it was a really big deal to get everything done by the end of 2019. I had been really excited because 2018 was not a really good year for me.
When 2019 came around, I was like, “This is my year!” Then I got diagnosed with cancer, and I thought, “Okay, maybe it’s not my year.”
It was really important for me to have everything done by 2020 because I just wanted a firm stopping point.
I was glad I had my hysterectomy in December. I was done with everything that was directly treating the cancer by the end of 2019.
Then I had a moment when I was sad that I wasn’t done with my reconstruction already. My really good friend had the best way of putting it. I was really bummed about it.
She said, “You know what, Callie? You’re rebuilding in 2020.” That really stuck with me and helped me. This is my year of rebuilding.
It’s not just about getting back to the way I was, but I’m becoming better.
I’m going and getting my yoga certification and my reiki healing certification. I’ve gotten into restorative yoga so I can help other people with cancer. I’m getting back to Callie, but I think it’s a better Callie than before.
How did cancer affect your relationship with your husband?
It certainly tested it. It was hard on him because he had to pick up the slack for me. I couldn’t cook and clean. Over time, you could tell he was ready for me to start feeling better.
That was probably one of the roughest things for me. I had gotten my second AC treatment. We had gone to Dallas to buy stuff at market for the bookstore I own. I wasn’t going to miss it.
We rented a motor scooter for me to take so I didn’t have to walk. I was so sick. I knew where every bathroom and trash can was in that place.
We were on our way home, going down the highway, and all of a sudden, it was like my hair just released. I felt it. It was the strangest thing I’ve ever felt.
Sure enough, I run my fingers through my hair, and it just starts flaking off. It was falling out, but it didn’t all come out.
I was trying to keep this brave face, but then the next morning I went to wash my hair, and it was coming out in clumps. I knew this was coming.
I had prepared. I had cut it short. Still, I bawled like a baby. You know it’s coming and you think you’re prepared, but it doesn’t sink in until it happens.
I called my hairdresser, and she shaved it for me. She did a mohawk first. It was awesome to have fun with it, but the hair loss was probably the most emotional thing for me.
How did your kids handle your cancer diagnosis?
My oldest son has autism. He was 16 when I was diagnosed, so he’s 17 now. The first thing I did was call both my sons’ therapists. They’re a husband and wife team, and one sees each of my sons.
I met with them and asked if they would help me with Ben and Logan. I wasn’t sure if Logan would understand because of his autism.
My dad had just died of lung cancer, so the only reference they had of cancer was someone dying. It was really important to me that they understood I was not going to die. I had a 95% chance of surviving.
Logan’s therapist and I told him together. At one point, he said, “I understand that my mom has cancer, and that’s not okay, but I understand.” That was a big deal for him.
He never went to any of the chemo appointments or anything with me, but he would ask, “How’s your cancer today?” He hated when my hair fell out. He did not like my bald head and would voice that.
Ben was 14 when I was diagnosed and is 15 now. He went to chemo school with me. He went to one of my appointments with me. It was important for me to make sure that he knew it wasn’t scary. His school counselor admitted to me that every time I went to chemo, Ben would go to see her.
It affected him. It made our relationship a lot better, though, actually. He realized his mom was human. For a teenage boy, he loves his momma and wants to spend time with me.
What advice do you have for someone who has just been diagnosed?
Cancer is a head game. That is really overlooked. That was one component of my treatment that I wished was emphasized more.
The way I dealt with it mentally and emotionally affected the way I went through it physically.
Make sure you are supported on the emotional and mental side. You could always tell when people were in a good place or not in the infusion center.
We laughed a lot. We found joys in moments. At one point, Logan (my oldest son) found my fake boob in my car. He held it up and goes, “What’s this?” I was like, “It’s my fake boob, son.”
He was like, “Oh my God, oh my God, oh my God!” It was like a hot potato. There were moments like that, and they were just funny.
Stuff like that was a byproduct of the cancer, but we have to laugh about it.
Just focus on today and what today brings. Don’t worry about next week’s chemo treatment or the reconstruction process.
Even though that’s your treatment plan at the beginning, it might not be your treatment plan later. You have to learn to roll with what’s going on.
Be kind to yourself. Some days, you’re not going to be a superhero. Some days, you’re not going to take on the world, and that’s okay.
Be kind to other people because you truly never know what they’re going through.
There were so many times when I was bald, and people would come up to me and say, “Are you going through treatment? I’ve been in remission for 5 years,” or something like that.
It’s like a club you get to be a part of. People are so willing to share with you that there is hope on the other side.
Joy’s Stage 2, Grade 3, IDC, BRCA1+, Triple-Negative Breast Cancer Story
Joy shares her stage 2 triple-negative breast cancer (TNBC) story and how testing positive for the BRCA1 genetic mutation altered her treatment path, including chemotherapy, a double mastectomy, and hysterectomy.
In her story, she also highlights dealing with scanxiety post-treatment, how cancer impacted her marriage, and the way she handled the diagnosis with her children.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
Finding a lump
I had started doing breast checks because a friend of mine was diagnosed a year before. She was still going through chemo and all that, so I started doing checks on myself.
One day, I was feeling kind of uncomfortable. I thought my underwire had gotten messed up or something. I came home, and I checked. I found a lump and panicked. I showed my husband.
We both agreed that I check enough that it shouldn’t be something serious.
I called my friend, and I called my doctor. I went in, and sure enough, it was a very fast-growing cancer.
What happened at the first appointment?
I made an appointment with my family doctor. The year before, I had a breast reduction.
My doctor said that maybe it was just scar tissue. It probably wouldn’t pop up that late after surgery, but it was still a possibility.
If I was going to try to get in with the hospital, it was going to take about 3 weeks to get an appointment. If I wanted to, though, there was a private clinic we could pay for and get into right away to get checked out.
My family doctor gave us a referral and wanted me to get it checked. She was on the fence about it and what it might be.
I went to the private clinic, and I went alone because no one really thought it was anything. They started with an ultrasound, and from that, he was pretty confident that it was breast cancer.
Then we did a mammogram and biopsy. I was texting my husband and friend in between all of this.
They said they would call me in 72 hours with the results of the biopsy, but he was pretty confident it was breast cancer.
Sure enough, he called me 72 hours later with the news.
Describe the biopsy
It looked like a hole puncher. They put a little bit of topical anesthetic. It felt like a piercing almost. They took samples from 2 different spots because he wanted to make absolutely certain.
They had to cover it and put pressure on it, and I went home bandaged.
Waiting for the results was hard. I wasn’t really eating or sleeping.
I decided to go to the hospital instead of sticking with the private clinic. My friend who had already gone through breast cancer told me, “If you want, this is my oncologist. I’ve already done all the research. Here’s the information.”
My doctor at the clinic transferred all the files over to the hospital, and within days, the hospital called me. I had the appointment with oncology pretty quickly.
He started scheduling a bunch of tests to make sure I was healthy enough to go through chemo. It was a week straight of tests.
How did you find out your treatment plan?
First, I met with the oncological surgeon, and then I met with my oncologist. When I met with the surgeon, I was kind of hoping that because my lump was so localized, I would just need a lumpectomy.
He said because I was triple positive, he wanted to start with chemo in the hopes that it would shrink enough to make my surgery a minor one.
Because it was so fast-growing, he was afraid that if we started with surgery, there would still be leftover cancer cells in my body.
I was devastated, of course, when I found out I needed chemo. My first thought was losing my hair.
He said we would do 16 rounds of chemotherapy and then surgery after about a month break. During that time, we also did genetic testing.
Throughout my chemo, we found out that I had the BRCA1 gene mutation. Doing a lumpectomy came off the table, and we would do a double mastectomy and hysterectomy.
What was the genetic testing process like?
They asked me a few questions about my family tree. There had been no history of cancer in my family. Other than that, it was blood tests.
They said they would get back with me in a few weeks with results, and they came back positive for BRCA1.
I had 12 weekly treatments. Then we switched drugs, and I was supposed to have another 4 treatments of that drug. It was supposed to be every 2 weeks at that point.
I ended up getting an allergic reaction to that chemo, though, and everything paused because I had to stay in the hospital.
My doctor had to go to the chemo board because he didn’t know what to do. He said I needed the drug even though I was having a bad reaction to it. It’s the one that every breast cancer patient gets, basically.
What they did was give me a smaller dose of it over a longer period of time. We did it once every 3 weeks instead of once every 2. I made it through all 4, but I was very sick from it.
During the first 12 treatments, I was pretty tired. I had some nausea. Once I changed drugs, I was very sick. I had pieces of my tongue and gums fall off. I couldn’t speak. That was so scary.
What side effects did you experience?
Even during the chemo I tolerated well, I still had to delay treatment a few times for my numbers to come up. We couldn’t control my nausea.
I had every anti-nausea drug known to man, and we still couldn’t control it. Other than that and feeling rundown, the first 12 weeks were okay.
When I had my last 4 treatments, I was not functioning. I was literally a picture-perfect version of the worst chemo patient you can imagine. I was emaciated and curled in a ball. It wrecked me.
For the first 12 weeks, my hair thinned, but I didn’t lose it all. When we switched drugs, everything was gone. I lost my eyelashes and my eyebrows, too. I was so sick, and I looked so sick.
How did you deal with chemo mentally and emotionally?
It was really hard. We had a countdown for when it would be done. I started speaking with a psychiatrist. We have kids at home, so I had to just focus on that end date and make it. I just went into survival mode at that point.
Surgery
What do you remember of going into the mastectomy?
I ended up getting 6 weeks in between chemo and surgery because I was so beat up from treatment. The morning of the surgery is when everything really hit me.
Through chemo, I was just fighting through it that I didn’t process anything. That morning, I thought, ‘I can’t believe I have cancer. I can’t believe I’m about to cut my breasts off my body.’
It was a hard morning.
My plastic surgeon was the same one who had done my breast reduction. Originally, the oncological surgeon was supposed to start, and the plastic surgeon would come in to do reconstruction later, because it was a 5- or 6-hour surgery all together with reconstruction.
The significance of having a doctor you trusted
I asked my plastic surgeon if he could be present when I was being put to sleep, though, because he’s almost a comfort to me. He’s someone who knew me before I was sick.
He did show up, and I was crying so hard. He took me in his arms, and he said, “You’re going to be okay. You’re going to wake up. Let’s just get this behind us.” He was joking, too, and he said, “You’re going to wake up with a brand new set of boobs!”
As I was falling asleep on the table, I couldn’t stop shaking and crying. He came next to me and ran his hands through my hair.
I stared at him as I fell asleep. He was trying to calm me down and put me at ease, so as I fell asleep, he was trying to comfort me.
What do you remember of waking up from surgery?
There was a nurse next to me when I woke up. I asked her, “What time is it? Was he able to go directly to implant?”
She said yes. Then I asked if my port was removed during my surgery. I really wanted it out. She said they were also able to do that, too.
I was in pain and a little bit of nausea, but I was glad it was done. Honestly, it wasn’t as painful as waking up from my reduction.
Since I had the reduction done, I was able to keep my nipples because they weren’t connected to anything. They were just there for show. There was no fear of spreading to them.
With the reduction, there was pain in my nipples and bleeding from them that would stick to the bandages, and there wasn’t anything of that with the mastectomy.
It was easier to handle. I had drains, which was definitely uncomfortable, but that didn’t last forever and was manageable.
What was the recovery from surgery like?
I’m an extremely stubborn human being. I slept in the hospital overnight. The next morning, they came in to check on me and see if I could be released.
The resident came in, and I was in the bathroom brushing my teeth. He was like, “What are you doing? You can’t get out of bed by yourself!”
I was like, “Well, I wanted to brush my teeth. I have buttons that move the bed up and down.”
My husband and I both work in the medical field, so there was nothing they could do for us in the hospital that we couldn’t do ourselves. I wanted to be home. I wanted to be in my own bed. I wanted to be with my kids.
They released me. For the next few days, we just had someone with me. We had full-time babysitters for me basically. I was very stubborn with that. I would still get out of bed and do things.
I wanted to go back to work as soon as possible as well. My surgery was in November, and I went back to work in January. Since I had 6 months of chemo, my oncologist said I needed 6 months of recovery.
He was not very happy with me, but sitting at home wasn’t going to be healing for me.
I needed to get back to work and my life. That’s what was most healing for me. It was a struggle to go back to work, and I was tired and achy. I still very much wasn’t myself, but I enjoyed being back in my routine.
That happened in June, so that was 6 months later. It was a joke compared to everything else, honestly. I wanted it done by my gynecologist. I asked if he could do it.
They said they wanted the gynecological oncologist to do it, but I pushed for it. They jokingly said, “Okay, if he can fit you into his schedule.” I texted him, and he said of course he would do it.
He’s a very funny and sarcastic person. I love him. He’s the coolest person. Going into it, I was joking about it with him. I was like, “I’m never gonna get my period again? Let’s do it! I’m all for it!”
I was so nonchalant about it. My gynecologist walked in and said, ‘Alright, let’s get you into menopause,’ and I was like, ‘Woohoo!’
Afterwards, I was bloated because he did it laparoscopically, but I’ve been bloated before. I was just like, “Okay. No more period. No more cancer concerns.”
It was so not a thing for me.
Did treatment put you into menopause?
I didn’t really have menopause symptoms after the surgery. I had those symptoms during chemo. My period had only come back once in between chemo and the hysterectomy. I don’t think my body ever came out of that menopause from chemo.
I had some hot flashes after surgery a little, I guess. The bulk of my symptoms were during chemo, though. Again, the hysterectomy was not a big deal for me.
What is your follow-up protocol like?
They said I had no evidence of disease (NED) and that I just needed to be monitored closely for 5 years. I was seeing my oncologist every 3 months, and at my last appointment, he just bumped it to every 6 months.
I’m a little nervous about that because I like seeing him. It calms me to go in and see him. My oncologist is amazing, and we run into each other all the time. I know if I have questions or concerns, I can reach out. He answers my emails in minutes. He’s great.
Reflections
Do you still deal with scanxiety?
I do have anxiety in between scans. I take very good care of my body. I’m not a smoker. Before cancer, I would work out literally 6 days a week.
I was in the best shape of my life. For me to get cancer, my big thing is, it can happen to anyone. I know it’s cliche, but it’s true. If I can get cancer, anyone can.
If it happened to me, I think, “Maybe it’ll happen to me again?” At work, there’s a carpet at my desk. It had gotten wet and had some water damage. I said, “Oh no, this needs to come out immediately. The last thing I need is mold and to get secondary lung cancer.”
I don’t cut my hair because I don’t know if I’m going to lose it again. My mother thinks I’m morbid, but I’m just being realistic.
I know I’m not immune to a secondary cancer. It happens to people. It can happen to me.
I’m not a hypochondriac, but at the same time, I wonder if things are cancer-related.
The scans, blood tests, and even just seeing my oncologist gives me peace. It calms me down and grounds me. I only start to feel nervous once I’ve gotten some distance from a scan.
The biggest thing for me was people helping my husband out. My son’s best friend’s mom organized a meal train for us.
It would come from strangers even. It was so beautiful.
My husband is a director of emergency services and is pretty much always on call, so for him to be at every chemo with me, I noticed he was getting a little antsy and short-tempered.
We started a schedule of different people who could take me to chemo. My in-laws took me, my parents took me, and my best friend went with me like 3 times.
My parents live 2 blocks from us, and our kids have bedrooms at their house, so they could go stay with them if they needed to or if we thought they were getting sick.
My parents really took on that role with my kids. My mother-in-law works from home, so she was able to be flexible and help out a lot.
Everyone around us would offer to pick up groceries or anything we needed. Everyone was so helpful.
They all said it was time for us to learn how to accept help, because we’re always helping everyone else.
How did cancer affect your relationship with your husband?
It’s funny because if you speak to my husband and you speak to me, it’s 2 different stories. I’m a huge control freak, so for me, in my mind, I feel like I was still very involved with everything.
My kids or my husband will make a comment about something, and I’ll be like, “When did that happen?” They’ll say, “Well, you were sick.”
My husband cried the first time I put on my wig. My family was in survival mode with us.
I was always nauseous, so I wasn’t eating very much. If it was 3 in the morning and I wanted McDonald’s, my husband would get up and go because he wanted me to eat.
We had a Christmas party, and some friends made a cake for me with a cancer ribbon on it. My husband made a speech, and he broke down.
It was horrible. We’re very snuggly. My kids were little. My daughter was 7, and my son was 3, turning 4.
They very much needed mommy and snuggles, and the fact that I couldn’t kiss them without the fear of getting sick was really hard.
I was as honest as possible with my daughter. She came once to a blood test. She walked around the chemo floor with me. She became a spokesperson or cheerleader, and that was so special. To this day, she’s so positive about it.
In her story, Caitlin also highlights her experience with fertility preservation, the impact on her relationship with her boyfriend-turned -husband, and dealing with the financial toxicity of paying for cancer treatment.
Give yourself a lot of compassion. Go easy on yourself. That’s something I wish someone would’ve told me.
I would feel guilty sometimes if I didn’t leave my house while I was doing chemo. I would feel miserable if I wasn’t up walking around. I would make myself feel bad for not doing something that I physically didn’t feel well enough to do.
That’s one thing I really learned post-treatment: I’m too hard on myself.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
I first noticed a lump one day. I was giving myself a stress shoulder massage. At first, I wasn’t really worried.
After a couple of days, it became the only thing on my mind. There wasn’t any pain. It was just the lump.
What were the first appointments like?
I didn’t have health insurance, so I went into Planned Parenthood, and it was just a physical touch exam to see if I needed a referral to see a physician. She determined that I need to be referred.
Then I went in and got a mammogram. They looked at it and saw that there was a mass. A couple of days after the mammogram, I had a biopsy. That was pretty quick and painless.
It was a little tender afterwards. I got the results that following Monday, so there was only a 3-day window of not knowing.
Processing the diagnosis
It was a very formal appointment run by a nurse. I call her my cancer concierge. She directs me to the right places and answers any questions I have.
I was really lucky because I was going to go to the appointment by myself, but my mom called out of the blue. I had been keeping it from my family because I didn’t know what it was, but I broke down crying and told her what was going on. She came to the appointment with me.
I had my mom tell my dad. It’s not an easy thing to do. I told my husband immediately. We were just dating at the time. I called him and told him what was happening. He left work and came home.
With everyone else, I just let my mom tell them because it’s not an easy thing to do. It really helped to have her as a buffer.
Cancer is a very emotionally charged life event that some people have to go through. It’s really painful to see your loved ones worry about it.
I didn’t get any second opinions about the cancer. I did get a second opinion about whether or not I needed chemotherapy, though.
After my surgery, which was a lumpectomy, I had 3 of my lymph nodes removed. One of them came back showing that there was cancer in it.
I saw an oncologist at UCSF and got her opinion about my chemo treatment, and I got a second opinion from a different oncologist. Both said the same thing, so I went forward with the chemo.
In the very beginning, when I found the lump, I did not have health insurance. Because of my age, nurses and doctors were not taking me seriously.
At the first exam I had at Planned Parenthood, the doctor told me to wait 1 or 2 period cycles before worrying. She said it could just be caused by my cycle.
In retrospect, I realize how ridiculous that is. You should never say that to someone when it comes to the possibility of cancer.
When I would make appointments, I had a lot of nurses say, ‘Are you sure you want to do this? Because you don’t have health insurance.’
It was a nightmare navigating the system to even get to my diagnosis appointment.
There isn’t really any financial support for women under the age of 40 who think they might have breast cancer. I was on my own in a lot of ways.
I had to pretty much demand an appointment because I was being pushed around a bit by the system.
My advice to anyone out there is don’t be timid. Trust your instincts. If your body is telling you that something is wrong, listen to it.
How did you decide between a lumpectomy and a mastectomy?
It was a conversation between me and my surgeon. She doesn’t do lumpectomies on anything larger than 5 or 6 centimeters, so I was just in the range of qualifying for that.
Ultimately, it came down to the intensity of the surgery. The lumpectomy was going to be easier on me and my body.
I also didn’t test positive for the BRCA gene, meaning it’s not something that’s hereditary. It’s environmental. Therefore, I made the decision to keep my breast.
Financial toxicity: paying for cancer treatment
Cancer is expensive. It doesn’t really matter if you have great health insurance or not. There will always be something that will add up.
Through my chemo, I was also doing herbal supplements, and that’s expensive.
Going to and from doctor’s appointments, you’re either paying for parking or paying for your transportation. On top of your medical bills, all these unexpected expenses were popping up. It was not an affordable journey, to say the least.
Luckily, I’d been getting a lot of support through my family. My mom would drive me to a lot of my appointments. That was a big help.
Little things here and there, like my aunts would send me gift cards for groceries. That was incredible because when you’re spending so much money on other aspects of your health, you can neglect simple areas like your diet.
My mom would come clean the house, so we didn’t have to get a house cleaner and spend money that way. There was no way I was going to be able to do stuff like that.
I did 1 round of egg retrieval. Honestly, I think that was harder than my first week of chemo psychologically. I’m not a big fan of needles, and you basically spend a month injecting yourself with hormones. Even thinking about it gives me the chills.
The procedure really isn’t fun. You’re uncomfortable and bloated afterwards. The lead up to the procedure where you’re giving yourself your own shots, I want to be optimistic about that.
But honestly, it was absolute mental torture for me. I cannot stand needles, and I really had to buck up.
What do you remember from waking up after the lumpectomy?
I woke up, and my aunt and my mom were there. When I was feeling a little better, my mom went out to get the car and left me in the room with my aunt.
I was pretty high on anesthesia, and I decided that was the moment to tell my aunt the most embarrassing moment of my life.
I followed it up with a motivational speech about how thankful I was for all the women who had come before me, because they really paved the way to make my treatment possible.
In the U.S. until the 90s, health insurance didn’t cover reconstruction for women. The standard procedure was a mastectomy and no reconstruction.
Living in today’s day and age, where women have fought to have reconstruction covered, makes insurance companies a lot more hesitant to want to do a mastectomy because they have to pay for reconstruction.
So, that was it. I went on a thankful rant about all the women who came before me.
What was surgery recovery like? Do you have any long-term hurdles?
My surgery was actually pretty easy. It was just a breast conservation lumpectomy. My tumor was 4 centimeters large. They were able to get clean margins during surgery. They did a really good job.
Everything looks normal and feels normal. My recovery time was pretty quick. I do have some girlfriends who had to have double mastectomies and reconstruction done, and it just makes my surgery look like a walk in the park.
As far as long-term side effects, I have some hardening of my breast tissue. It’s nothing you can really see. It’s just something to touch. I have some limited range of mobility in my arm. I can’t raise it all the way up.
Right after the surgery, there was some swelling. The pain was pretty manageable, though. Not too bad. I did have what’s called a hematoma, which is when the blood start pooling.
That had to be drained, and that was super gross. My side effects were pretty minimal after surgery. I was very lucky.
Chemotherapy
AC-Taxol chemo regimen
I did 4 rounds of AC treatment over a 2-month period, which was very intense. Then I did 12 rounds of Taxol over a 3-month period.
The AC treatment was really tough. The first round went really well. I didn’t have a whole lot of side effects.
I did have a metal taste in my mouth, and I was sleepy, but I’m not sure how much of that was stress and how much was the chemo.
However, the next 3 rounds were progressively more and more difficult. The last round of the AC treatment was probably one of the hardest weeks of my life. I couldn’t do anything. I couldn’t walk without getting nauseous.
The anti-nausea medicine they give you is very good, but it didn’t fix this weird constant metallic tingling I was getting.
How did you deal with nausea from the chemo?
For me, when I was nauseous, I found that it was my body needing something. Either I was hungry and didn’t know I was hungry, or I was thirsty and didn’t know I was thirsty. Maybe I was even sleepy and didn’t know I was sleepy.
You’re on all this medication, and it throws your body out of whack. When I would get nauseous and it was too much for my anti-nausea medicine, it was usually as simple as drinking a glass of water or taking a couple of bites of a sandwich.
I did [lose my hair], almost on the dot when my oncologist said I would. The AC treatments are separated by 2 weeks.
I had my first round of treatment. Almost exactly to the day of my second round of treatment, my hair was beginning to fall out.
It started to look very dull and flat. My actual scalp felt very tender and started hurting. The next day, when I was in the shower, chunks started falling out.
The hair falling out was pretty emotional. I cried. I expected to. When I went to shave my head, though, that was actually a fun experience.
I’ve been seeing the same hairdresser for 13 years, so it was an honor to have her be the one to shave my head. She’s become a good friend. It was more playful and empowering than tragic.
I feel like kind of a psychopath when I say this, but I really enjoyed radiation. I feel like it was just such a structured routine.
I would go Monday through Friday. Every day I’d be at the doctor’s office by 9 a.m. It just filled in this well-needed structure of routine that cancer had wiped out.
Physically, it wasn’t fun, but it’s quick. You’re really only going through each treatment for 10 to 15 minutes. It kind of feels like a weird, tingly sunburn.
By the end of the 33 treatments, the area was really tender to the touch. Compared to chemo, it was a walk in the park.
Radiation therapy side effects
At about week 2, I got really tired. I came out of chemo with all this energy and enthusiasm. I had a couple of weeks off where I wasn’t having anything done at all. I was able to start exercising again.
At that 2-week point during radiation, that fatigue came back, and it came back pretty hard. That last week of radiation, I was probably as tired as I was during chemotherapy.
However, with the radiation, because I didn’t have the nausea like I did with chemo, I was able to stay active. I can’t even express how much that helped.
Even just walking a couple of miles a day had a massive impact on my energy level.
Days when I couldn’t walk around, I could really see a difference. I just really recommend moving your body. Get that blood flowing, because it helps.
Hormone Therapy
What’s your hormone therapy like?
I’m on the anti-hormone therapy because my cancer cells respond to estrogen and progesterone. Normally, I think the typical medication is tamoxifen for women.
However, my oncologist said that there’s about the same level through another routine.
I’m doing Lupron and anastrozole. It’s a Lupron shot once a month and then Anastrozole tablets daily, kind of like birth control pills.
It puts me into a chemically-induced menopause like tamoxifen, only my ovaries are completely shut down, so my body isn’t making any eggs at all.
Have you experienced any side effects from it?
I all the sudden have a mustache. I’d never had that before. I’ve been having to keep up a new wax routine.
One side effect that I was really not excited about was a little bit of sexual dysfunction. I kind of lost my appetite for sex — and being a newlywed, that really sucks.
I also had some vaginal thinning as a result, because my body’s in menopause even though I’m 30 years old. It really made sex quite painful, and I had to seek treatment through a specialized OB/GYN.
How important was it for you to have caregivers around?
Very. It’s not so much about needing help with things. You do need help with things, but it’s more knowing that people are there for you that’s important.
Simple things would make such a big difference. My mom would come over and make dinner sometimes, and not having that pressure of worrying about dinner made such a difference. My aunt would send me letters in the mail.
Little things like that that let you know people are cheering for you are really important. It’s important for your mental health, but I also think it’s important for your physical health too.
Going through chemotherapy can feel really isolating and lonely. Having your caregivers around really helps you through the process both physically and mentally.
I was really lucky in the sense that my family was very supportive through this. The lowest point I had was actually the day after my last radiation treatment when everything was done.
Throughout my entire treatment, I had focused on the end date as my bulls-eye. I put on my tunnel vision goggles and went at it. I didn’t see anything else in the world. Nothing else could bother me.
When I reached the finish line at the end of treatment, all these emotions I had been holding in came up to the surface at the same time. I had a complete breakdown.
I couldn’t stop crying for a couple of days. I really do think that that was my lowest point. You’d think because it was at the end it would be the highest point, but for me it wasn’t.
There’s also this loss that you feel when you’re going through treatment. Your community is so strong.
Then when you end treatment, it’s not that they disappear, but they’re not as present. Not knowing what post-cancer life was supposed to look like really hit me hard.
What helped you deal with the hardest emotions?
I’ve been going to therapy, and I find that that helps a lot. I’m part of a support group of young women who are surviving breast cancer. That helps an unbelievable amount.
I can’t recommend a support group enough. I’ve never been a part of one before this, but being able to talk to someone who has been through some of the same stuff and understands you is so healing.
I also really am getting a lot of help from my personal therapist. They’re just like emotional coaches.
When you’re recovering from an injury and an emotional injury like cancer, you need your trainer to get you back into shape.
Is there anything you wish you had known about the process going into it?
I wish I had been more prepared for post-cancer life and survivorship. I had beelined to the end of treatment so much that I didn’t know what to expect at the end. I wish I knew in advance that it wasn’t going to be a celebration.
I imagined it being like crossing a finish line with this big party, and I’d be so happy. It really took me for a loop because I was actually a little depressed and have needed to seek mental health services.
I wish I had known it was going to be so hard, because then I would have been prepared. The first month after treatment ended, I really neglected my mental health, and I suffered a lot. It was a really unnecessary suffering.
Your “new normal”
The new normal is — what is normal?
I don’t know if I’ve found it. Right now, I’m trying to find out how much of my identity to attribute to cancer.
I’m meeting new people now, and since my hair is coming back, they don’t know that I’ve been through cancer. How much do I disclose to people?
I’m an artist and work a lot with the female form and body. When I’m talking to my clients or prospective buyers, how much of that do I talk about? The new normal is finding my normal.
It’s kind of been an interesting journey of me creating boundaries emotionally and deciding which parts of my life cancer controls and which parts I have control over now.
Cancer’s impact on your relationship with your spouse
It was very difficult. It fast-tracked my relationship. When I was diagnosed, my husband was just my boyfriend. We were in a mentality of “head over heels in love, but we’ll never get married,” because we don’t believe in the system.
When I received my diagnosis, I was really struggling with the health care system, supporting myself on my own, having to go down to part-time, and all that. I live in the Bay Area, and rent is no laughing matter.
Going down to part-time was going to be impossible without moving in together, and we also made the decision to get married.
That sped up our relationship and pushed it in a direction I don’t think we had planned on going. It also took an emotional toll on him. He struggled with work. He went through a sort of depression.
Even through recovery, he’s going through his own emotional recovery very similar to mine, but different. He was there the whole time throughout the cancer.
He’s like the unsung hero — part of the support network. They suffer a lot, too, and they don’t get the recognition they deserve.
What advice do you have for other patients as far as navigating their relationship during treatment?
Communication. My husband and I have what we call “Babe’s Hour” in the evenings, where we sit down after our day and talk about what has been going on in our lives.
We refresh the relationship and tell each other how much we love each other.
Having this very intimate and personal time reserved for communication is what made this relationship possible through such a traumatic time.
Communication is important, but so is space. It was really hard for me to continue to watch him live his life while I had to put mine on pause. I had to learn how to give him his space through this.
Do you have a message for newly diagnosed patients?
Give yourself a lot of compassion. Go easy on yourself. That’s something I wish someone would’ve told me.
I would feel guilty sometimes if I didn’t leave my house while I was doing chemo. I would feel miserable if I wasn’t up walking around. I would make myself feel bad for not doing something that I physically didn’t feel well enough to do.
That’s one thing I really learned post-treatment: I’m too hard on myself. I think a lot of women have that same mentality where they feel guilty because they’re not contributing the way they were before. It can really eat you up.
I recommend actively practicing self-compassion. Take some moments out to treat yourself. When that negative voice in your head says you’re a failure, stop and remind yourself that you’re not.
Remind yourself that you’re going through a lot, and you don’t have to be perfect.
