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.
In her story, Rach also highlights the process of going through fertility preservation, the importance of self-advocacy for patients, and dealing with financial toxicity in paying for treatment. She gives some guidance on how to navigate the impact of a cancer diagnosis on relationships.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
Describe your first symptoms
It was a little bit of a process. I think it really started during my honeymoon. I had my honeymoon in October.
We were in the Greek Islands, pretty much enjoying life. One of the days, we were like, “Oh let’s just hang out by the sun.” I was putting on my swimsuit top, and it’s one of those that were clasped in the front.
As I was attempting to put my swimsuit top on, that’s when my right hand just brushed over my right breast, and I felt something there.
The thing is, growing up I’ve always had this tiny lump, what I hear is common with other girls. It really wasn’t deemed as anything, and it probably wasn’t anything.
But I will admit, I rarely did any self breast exam because I just didn’t see the point.
The only time I would have it was when I would go see my doctor every year for my annual exam. As I brushed my right breast, I was like, “Okay, I’m kind of confused because I don’t know if it always felt this way, or it actually feels bigger.”
When I was explaining this to my husband, I seriously was about to faint. Part of me felt like something was wrong.
Of course, by the time we got back from our honeymoon, I forgot about it. The truth is I didn’t think anything could really be wrong with me.
Describe your diagnosis process (medical visits, tests, etc.)
The beginning of January, I actually had my physical exam that I was scheduled to have with my primary doctor. During my time there, she asked me when she was doing the breast exam, “Did that feel different?”
I was like, “Actually, I was hoping you can tell me. Because I can’t tell. Maybe? But I’m not sure.”
At that time, she said it does feel different. “It feels like you have 3 masses in there, but it could be fibroadenoma.”
She’s said, “You’re 27. At that age, women start to develop fibroadenoma. But just to be sure this is fibroadenoma, let me just schedule you a breast ultrasound.” She scheduled that immediately.
Describe the breast ultrasound
I did the whole breast ultrasound. I thought it was weird because the technician would continuously come back into the room and then tell me she needed more images.
Each time she thought she was done, she comes back saying, “Oh, we need more.” This literally took the whole day.
As I was getting dressed, they told me, “Oh wait, don’t dress yet. We need some more images.”
It just so happened I had my first-ever mammogram, and I was so confused.
Biopsy confirms cancer
As soon as I got home from the hospital, I got a call from my primary doctor. The next thing I know, I got my biopsy scheduled.
When I finished it, there was a patient navigator in there with me. My primary physician actually called me during her vacation, and she’s like, “I’m sorry I have to call you.”
She pretty much confirmed that I had 4 masses that were malignant, basically 4 cancerous tumors, and confirmed with me that I have breast cancer.
Luckily, for some reason deep down inside of me, I also felt like I should work from home that day, and I’m very glad I did.
Hearing you have cancer while you’re in the middle of working, you’re just like, ‘Wait, I just finished one of the most important meetings, and now I’m being told I have cancer? This is bizarre.’
But at the same time, it didn’t register. I heard her say I have cancer, and I immediately called my husband, my family, or anyone I was close to to tell them what the results were.
As I was saying it, it just didn’t feel real. As if it had to belong to someone else, not me.
Ultimately, that’s what led to my official cancer diagnosis. It was January 25th.
That’s the weird part. You know how your mind thinks there’s something wrong, but maybe not? I’m not quite sure exactly how to process what I was thinking.
You hear the word “cancer,” and you know it’s bad. You see it on TV, and you always feel bad whenever you hear that anyone has to go through cancer.
But you never ever think it actually will affect you.
It’s a weird feeling thinking, “Maybe there’s something wrong.” But at the same time, I kept telling myself, “There’s no way. This is a rare thing.”
I immediately called my husband and said, “Hey, I just got the results.”
He’s like, “All right.” I think he knew. I think he probably could tell by my tone, my voice. I’m not sure, but he knew. He was like, “I’m heading home now.”
I called my parents and pretty much just told them, “I got my biopsy results, and they confirmed that it is breast cancer.”
At first my dad was confused, because he was like, “Are you sure that’s what you heard? Maybe you think…”
I was like, “No, I’m pretty sure that’s what she said, because she’s having me schedule to see an oncologist and a surgeon.”
My dad’s like, “Okay, well, I’m going to call your mom. I’m going to pick her up from work now, and we’ll come over there.”
I texted my best friend because she’s been asking me, and she kind of knew what was going on. Next thing I know, she didn’t really tell me she was coming over. She just came over.
I think it was harder for my in-laws — I’m also close with them — because they weren’t in town. They were in Florida.
They were being very optimistic the entire time because people who have abnormalities, usually it’s nothing.
It was also really hard to hear it is cancer. I let my husband handle it. They were very shaken by with the news, but there was no way to dance around the results.
Yes. I wanted to take advantage of all the great hospitals that I live by, so I pretty much had 4 second opinions. I wanted to make sure, because I came from a family who has worked in the medical field.
I also understand the importance of being in the right care, and that also has to mean who I feel the most comfortable with. It’s a chemistry kind of thing.
If you have a good vibe about your doctor, I honestly believe it’s not going to be an easy process, but it’d be easier. I wanted to make sure that I found the right one for me.
How did you decide where to get treatment?
With my patient navigator, it was all regarding that one hospital. I was pretty vocal with every doctor I met at that first hospital.
I’m like, “I’m going to go seek a second opinion.” They also agreed. They were like, “You know, that’s good.”
Then I also worked with that hospital to make sure to start releasing some of the test results to all these different hospitals that I wanted to get a second opinion on.
I also asked a couple family members who are doctors about who they think would be best and to give recommendations.
My husband and I did a little bit of our own research. Some of our other family members who wanted to help us out in a way did their own research.
Ultimately, I came to a decision with which doctors I wanted to see in each hospital. I met with the main doctor I wanted to see and their team.
One thing I know is you may have a primary attending that will be your doctor. They’ll handle your standard of care.
But they always have a team. You have to make sure you feel comfortable with that team, too.
They’re the ones who are going to be checking up on you more often than the attending physician. I also wanted to hear what their treatment plan was.
What’s crazy was every hospital was slightly different, and I was glad I was able to see that. For me, it’s very important to go with a treatment plan that I feel most comfortable with and with the best outcome.
Neoadjuvant chemotherapy
My treatment plan was neoadjuvant chemotherapy. It is basically having chemotherapy prior to surgery.
Every doctor had a different opinion, but I went with a doctor who preferred neoadjuvant chemotherapy because they said that shows evidence and proof that the treatment is working.
If they’re seeing the tumor shrink, then they know whatever they’re doing is killing the cancer cells. They said in their eyes, if they remove the tumor first and then get treated, they are not sure if they’re giving me the right regimen. They’re kind of just killing it blindsided.
One thing I wanted to make sure before I started chemotherapy was that I did the fertility preservation, which is why there’s a gap between when I got diagnosed and when I started chemo.
I got diagnosed on January 25th, but I didn’t start chemo until March 17. In between, I was not only doing second opinions, but was also thinking about fertility preservation.
My husband and I knew we wanted to have a family. We didn’t plan on having a family soon after we got married because, at this point, we were only 6 months into our marriage.
A lot of the doctors did say, “If you want to have a family, that’s something you have to consider.”
With treatment, things can change. Your reproductive system can change, and it may not be a guarantee that I can naturally conceive a baby.
She had me meet patients who naturally had a baby without going through any IVF process, but also had me meet some of her patients who went through the fertility preservation.
She said, “I want you to know you have options, and I will support whatever decision you make.”
There’s a fertility specialist that deals with cancer patients, and she said, “I’m going to talk to him and make sure every medication that he is providing you is something I feel comfortable with. No matter what happens, my team is ready to manage whatever it is.”
How did fertility preservation affect you emotionally
It was a very hard decision. Because it’s triple positive, it also means that my hormone receptors are what’s feeding my cancer.
I was afraid to first go through this fertility preservation process, because it does mean that they’re going to have to give me more hormones to speed up the whole fertility preservation process and make sure they retrieve everything they need in order for it to be successful.
One of my doctors told me, ‘I want to take care of you now. I want you to be alive, but I also want to make sure when you’re alive that you also have a good quality of life after.’
She told me, “If having a family’s important to you, even if you don’t see yourself having it right now, I really think this is the route that you should go. It doesn’t mean that you cannot naturally have a baby.”
I thought, “Okay, I like this. I like what she’s saying. I liked that she cares what my life would be like in the long run.”
I did the fertility preservation process, and it took about a week to retrieve my eggs. Then we also did the whole embryo process. I feel very fortunate to say that we have 8 frozen embryos.
Describe the IVF process
I think I was in what they call survival mode. I was like, “Okay, I just need to figure out what the next steps are.” I obviously knew cancer is bad, and it came to me that I have cancer. I was like, “You know what, I’m ready to fight this.”
I was like in more survival/fighter mode, but it was exhausting because I had a very intense day job. It was demanding just due to the nature of the work I do, so trying to juggle that and then going to doctor’s appointments — it’s mentally exhausting.
By the end of the day, you just literally don’t want to do anything.
There were times, though, I was really, really scared because you hear those things about cancer. Ultimately, I just wasn’t sure what the outcome would be.
I feel comfortable with the team I’ve selected, but I also know there’s only so much that could be done. I just really, really hoped that the route I chose was the best route to take.
What was the next step after fertility preservation?
I did the neoadjuvant chemotherapy. At the same time, they started targeted therapy and part of my hormone therapy.
My regimen is TCHP, which included Herceptin, the targeted therapy. For my hormone therapy, they had me already started on the Zoladex shots.
They just wanted to make sure they were protecting my ovaries and said it was important for me to basically have a baby afterwards.
They wanted to suppress any hormones in my body. I went through 6 rounds of it. It definitely wasn’t easy.
Chemotherapy and Side Effects
Describe the chemotherapy
It was 6 rounds.
There were times where I couldn’t even do my next round of chemo because my blood counts were so low, and it had to be rescheduled.
That was very disappointing. I remember the first time that happened because I had this countdown. I’m like, “Okay, just finish round 1 or round 2, which means by the time I’m done with everything, I’ll be done on this day.”
When you can’t go in for your treatment, it just sucks because then you’re like, “Ugh, then that means my date gets pushed back when I’ll be done.”
There is a good thing, though. I say good thing because you always have to find silver linings even in the toughest times. The day before you go on your next round is when you feel your best.
You’re like, “Oh, my God, I feel like me. I have a little bit of energy. Oh, my gosh, I can actually drink water because it doesn’t taste disgusting.”
Those were my favorite days, and I always try to think, “Oh, what do I want to do because I feel well?” I make those days very special for me.
It’s crazy because I think I took for granted what it felt like to be me.
When did you lose hair?
I would say I immediately lost my hair. I thought I had time with my own hair, but I lost it literally maybe a week after the first round.
All my nurses said things like, “If you want a wig, we suggest you go look for a wig now before you lose your hair, if that’s something you’re looking into.” I did get a wig, I think, before I started.
Did you get a wig?
I did get a wig, which I didn’t really wear much except for when I was on the blog. In Chicago, they have this salon specifically for people with chronic illnesses.
It’s like a regular hair salon. It has all the bells and whistles, but it’s super clean and sanitized. They only have one patient in there.
You can select wigs to make you look like you, so before I even went in for my appointment, I had sent them a picture of myself. I walked in, and they had 5 or 6 different wigs that kind of looked like my hair.
I tried each one on, and then whatever one I feel comfortable with, that was mine. Then they’re willing to cut it, shape it, and color it however I wanted, which was incredible.
I did blog still when I was diagnosed. It was kind of my saving grace, if you call it, because during chemo you feel so sick, you feel so helpless, and it’s so hard to describe because it’s like an illness I’ve never felt before.
It wasn’t the cancer that made me sick. It was literally the treatments.
There are times where I felt like, “I don’t know if I could do this anymore.” I can see why it could be so easy to give up because there are times when you’re waking up, you don’t know how you’re gonna feel. You just don’t know how your body’s going to react.
No matter what meds the doctor prescribed you to alleviate the side effects, it’s still there, and you still feel like crap.
What were the chemo side effects
It’s a little hard to give a timeline, but I would say the day of chemo, it’s obviously a really long day, but I don’t think the side effects or any symptoms really start showing up then.
I know it’s different for everyone. Some may feel it immediately, but for me the day of, I was exhausted just from being at the hospital all day and the next day, too. I didn’t start experiencing side effects till a couple or a few days later.
It would first start with the nausea. I think nausea was definitely the worst. Then nothing tastes good.
Mainly everything tastes metallic-y, which makes it even harder to want to drink water, even though you’re supposed to stay hydrated. That was hard.
I would say one that I didn’t expect to have, even though I was told about it, was the mouth sores.
When I thought mouth sores, I thought maybe 1 or 2 here and there. No, this is like mouth sores where your entire mouth is coated in it.
That made it harder to even want to eat or talk, because it was painful. They did provide me this magic mouthwash, which kind of temporarily numbs the inside of your mouth just to make things a little bit more tolerable.
It comes in stages, every side effect. Sometimes, some weeks or some rounds, you’ll get a lot of them all at once. Then another side effect comes in.
You pretty much have your side effects up until a day or 2 before your next round, and that’s when you seriously just feel your best.
I pretty much just had to suck it up; I don’t know if there’s anything really you could do. They provided me Zofran and other anti-nausea meds. I tried to get on it before my next dose is due so there’s no gap, but it’s still there.
They always tell me, “Oh, whatever you do, don’t throw up. We want you to just keep it all in.” There were times where I was like, “I am so sick to my stomach I have to let it out.”
It’s so easy to want to give up because you just feel awful. There were times where I had my dark moments, and I thought, ‘I don’t know if I want to go through this anymore. I really don’t.’
If I came up with new side effects, I definitely let my team know. My husband is definitely frequently at the pharmacy, just picking up meds.
We actually had a good relationship with the pharmacist. I guess it’s a good or bad thing, right? You don’t want to always be there, but it’s kind of good.
Without them knowing fully what’s happening to me, they already knew, and they were very sweet about it. They tried to give tips and advice, which was really, really sweet of them.
What helped me was that I realized I’m young, and I still have a life to live.
Overall, I love my life, but I also know I have a life that I’m building with my husband, who has been the sweetest thing and the greatest blessing ever.
I want to fight for him; I want to be there with him. I want to have that family and live the dreams that we wanted to do.
We had a bucket list of things we wanted to do as newlyweds, and I felt bad because we couldn’t do them.
We literally had to put the newlywed life on hold. We didn’t experience that right after we got married, because I was diagnosed.
That gave me a little bit of a motivation. As far as handling it, I just try to be good with taking all these meds, but I mean I just really had to suck it up.
Sometimes getting a little fresh air helps, but sometimes it’s getting that push to get that fresh air.
My blog was one of the things that got me to go outside. My husband’s like, “Get ready, and even if we shoot for 10 minutes, then 10 minutes it is. We don’t have to do a full-on shoot.”
That 10 minutes of outside really help just for a little bit. It gave me that little push I needed, and it helped me feel better.
Blood pressure problems during chemo
One thing that did happen during chemo was my blood pressure. I’ve always had normal blood pressure, but during the second round, my blood pressure was really, really high — close to the 200s over 110.
It was just ridiculously high, to the point where they were a little scared because they weren’t sure if that was the Herceptin or if it was my heart working too hard.
Chemo is basically toxins in your body, so your heart probably is working a little extra hard. Also, I know heart disease and hypertension runs in my family.
During that time, it was also difficult to find the right blood pressure meds because they had to make sure whatever meds they were giving me also went well with chemo.
They found a couple of blood pressure meds that would pair well with chemo, but they didn’t work – they didn’t do anything – my blood pressure didn’t lower.
Eventually, we found a drug that worked. I actually had to go see a cardiologist who also dealt with cancer patients. It was really nice that they had something a little specialized. We did a little trial and error. That kind of helped stabilize my blood pressure.
When I was done with chemo, regarding Herceptin, I think I reacted to that very well. It was one of those things where it was just like another drug to take.
It’s a little bit hard. I didn’t even realize that you could still experience side effects when you’re done with chemo.
I had like a 10-year treatment plan overall. No matter what drug you take, you will experience side effects. Sometimes the side effects are similar to what you took from chemo, or sometimes the side effects from chemo just wait until after you’re done.
These are considered long-term side effects. Usually, doctors don’t know when that will ever go away. It’s one of those things that you just kind of have to work through regarding the whole survivorship.
Targeted Therapy
Describe your targeted therapy
One of my targeted therapies was Herceptin, and that’s why my chemo regimen was TCHP.
Whose decision was it to start targeted therapy?
It was the doctors, and I think it’s pretty common to have Herceptin with your chemo cocktail.
Describe the targeted therapy regimen
It was hard in the beginning because it was mixed in with all the other chemo drugs.
One of the things they wanted to look out for was that it could weaken your heart, so that was one of the side effects. They’ve been proactive with checking my heart.
Targeted therapy side effects
For targeted therapy with Herceptin, that was it. I did start another one when I was done with Herceptin, called Zometa.
With that, I experienced side effects the first round. It gives you flu-like symptoms, and I felt those symptoms immediately.
You just feel like you’re out of it, you feel sick to your stomach, you just feel like you have the flu, you have chills, and then you definitely have to pay attention for fevers.
Luckily, mine was never ever high enough that it resulted in going to the ER, but those are the few things that you have to look for.
Regarding hormone therapy, I had Zoladex. With them, I take the shots every 3 months. They also put me on aromatase inhibitor, and I use Aromasin for that.
In general, with this type of treatment, it just medically induced my body into menopause.
Here I am at 27, and my body goes into a complete 180.
That means your body just freaks out. You receive all the side effects that anyone has with menopause: hot flashes, bone aches, or bone pains.
There’s just like a slew of things, and it’s something that your body, at this age, should never go through.
Double Mastectomy Surgery
Describe the preparation before the double mastectomy
It’s kind of 2 parts. With my surgery, they wanted to make sure the lymph nodes are not affected. A week before my double mastectomy, they took out 6 sentinel lymph nodes — I can’t remember, 6 or 9 — and they did a biopsy on that.
If you’re not aware of it, if you tested positive for cancer on the sentinel lymph node, then chances are that other lymph nodes are affected. I was fortunate that those tested negative after chemo.
Also, that gave them a better game plan on how my surgery would be, because ideally I wanted a double mastectomy or bilateral mastectomy with immediate reconstruction.
But I was told, “If your lymph nodes are affected, then you’re going to need radiation, and we don’t recommend doing immediate reconstruction.”
It was nice that my lymph nodes came out clean.
A week later I had the double mastectomy scheduled, but it wasn’t guaranteed. It kind of depends on what they see while I’m under and if they think immediate reconstruction is a possibility.
If not, then I had to go through the expander route and then do reconstruction later down the road.
Fortunately, I was able to do a double mastectomy with immediate reconstruction. Overall, that surgery took 9 hours. My whole family was there, and it was a very long day for them.
What I didn’t realize was the recovery aspect of it and how much pain I would be in. You really lose your ability in your upper half.
They put on so much pain meds that I didn’t realize how much pain I was until they had to wean me off to a lower dose of pain meds.
Recovering from the mastectomy
That’s when you start feeling everything. It hurt so bad. I remember I had to go to the bathroom so badly, but I couldn’t even walk. I had 3 nurses helping me.
You’re also a little embarrassed because people had to help you use the bathroom. I’m so used to doing things on my own and these things that came so naturally to me, but now I required assistance to even go to the bathroom or have someone to lift me up.
I also got very nauseous from anesthesia.
It didn’t help that I was throwing up nonstop, which made the pain on my chest much worse.
I would say that was quite the experience. I’ve never felt that kind of pain before because before that, I’ve had very minor surgery, very easy procedures.
Going through such a major surgery was definitely a shocker. I didn’t realize how much I relied on other people to just do my day-to-day stuff. It was frustrating because I couldn’t just go to the bathroom.
I literally had to ask someone to help me with the shower and help me dress. Then when I had to come home from it, it was just annoying to have these drains on the side.
Then, basically being told, “Oh, you have to be pretty much bedridden the entire time.” That also really sucked because I couldn’t do much. Definitely an experience I do not recommend.
Deciding between a lumpectomy and a double mastectomy
There’s 2 things that I had to consider. One was symmetry. The mass on my right side, considering I had 4 tumors, literally took out a large quadrant of my breast.
They said, “We can’t really pump you up because you’re not large chested.” To me, I felt like if they’re already taking out that much, they might as well take out the whole thing.
Then I thought about my chances of getting breast cancer on the left side because I have it on the right.
They told me, “Well, you have a higher chance. Of course, these numbers are still low, but you have a higher chance of getting it on the left if you had it on the right.”
In my mind, I’m thinking, ‘If I’m going through cancer, I’m going to go all out to fight this. I hope and I pray to God that I don’t have to go through this again.’
That was my mindset, and I was like, “You know what? Just get rid of them, both sides.”
Describe your experience with the reconstruction surgery
I had that at the same time as my mastectomy. I chose implants. Before the surgery, I was not aware of how many options you can have.
Ultimately, I trusted my plastic surgeon to choose the implants that would look best on my body and will be great long-term. I also wanted one that was as close as possible to my original breast size.
I got comfortable in my own skin, so I just didn’t care to have large breasts.
I’m a fashion blogger and I already had outfits in mind of what I’d like to wear. I got accustomed to what clothes would look good on me.
Body positivity
Unfortunately, since my breasts were really small, they didn’t have implants that could be that small. They did warn me that at the end of it that they would probably be larger.
I think that was an adjustment, just waking up and having larger breasts than I’ve ever had.
For me, my confidence came from my clothes, so when realizing some of my clothes don’t fit, it just kind of made me feel sad because I didn’t have my go-to to help me feel confident.
I had to figure out my whole new groove, and that’s really hard because your groove is what comes natural to you.
I think that’s what most people don’t see — some people take for granted what comes natural to them. When you lose that ability, you just feel lost. I didn’t feel feminine at all.
I’ve put on quite a bit of weight from treatment, and that’s one of the side effects, too. I’m 20 pounds heavier than I’ve ever been.
It’s like a whole new adjustment to your body. I feel like I have these foreign objects on my chest. It doesn’t feel like it was part of my body.
It didn’t feel natural to me, especially when you’ve lost all feeling to your chest. When they remove your breast tissues, you lose all the nerves, too, so you lose feeling.
You don’t even have this connection for it to feel like your own body. That itself is a whole ‘nother journey.
Is there anything you did to help you through this process?
I had that surgery with the sentinel lymph node. As far as any preparation, really, no. I just made sure I had all the stuff I needed, so when I come home, I was equipped with it.
I was fortunate that I had a coworker who had a mastectomy in the past, who told me, “You would want these wedge pillow because it helps you sit up.”
I had to make sure I got myself the right pajamas so that I can fit in it. I knew I was going to be swollen in the chest, but I also know it was going to be hard for me to put clothes on.
I made sure it was button pajamas, something that can manage my hot flashes, because they were coming on really strong.
I also wanted to make sure I had food. I know my husband didn’t cook. I was the cook in the family, so I had to make sure there were things prepped.
I made sure we had family members to help out since I couldn’t really do much. I was pretty much told I’d have to be in bed the entire time.
I had to make sure I had family members home with me to be able to take me to the bathroom, feed me, change me. There was that kind of coordination prior to surgery.
Quality of Life
Were there any surprises during your treatment process?
The whole surprise is the whole body change. You don’t realize how much it affects your body physically and then how your body changes. It changes you mentally.
I thought in my mind, “You go through chemo, and then you’re done.” No, because then you still have all these other treatments that can change you day to day. There’s a whole new world you go into now.
People assume you are done with everything; you’re cured. There’s no such thing as the word ‘cured,’ which is why there’s people advocating for more cancer research.
I didn’t realize how deadly it is for young women with breast cancer, especially under the age of 40. It’s so underrepresented.
Someone who is 60 and someone who is 27 may get the same treatment plan, but your bodies are in different stages. Your lives are in different stages. The treatment changes all of that.
You see your friends and family able to move on and do things that you aspired to do, but you can’t. I think that’s really hard.
Were you surprised by your hair loss?
I was surprised how quickly it fell off, but I knew eventually it would. I thought I would be really sad at that point when I lost it, but it was more annoying because you lose so many chunks of hair.
You leave trails everywhere, and it was just annoying. No matter where I go, I’m just constantly shedding to the point where I told my husband, “Just shave it off. I can’t deal with this trail.”
I didn’t realize how much I missed it. That part was hard because I’ve grown to be very, very attached to the hair growth, constantly checking to see the progress, and I had pictured the length my hair would be in a certain amount of time.
It didn’t help with the fact that I already didn’t feel feminine. I’m not saying hair is everything, but hair was part of my identity and always has been, so it took me a long time to even get a haircut when I needed it.
My hair person totally understood what I was going through, and she was like, “Let me help you. If along the way you don’t like it, then we’ll stop.”
Something about the way she was talking, I knew she would take care of me. She did a good job making me feel a little bit more feminine.
Long story short, I didn’t feel the effect of the loss of hair until after everything.
What was the worst thing you experienced?
This one is bad and good in an odd way. It’s the side effects. You literally have no control over it.
It’s so easy to want to give up. I had to think about my life and think, “Oh, do I like my life? Do I love my life?”
I had to come to terms with death. Accepting it.
I told myself, ‘If today’s my last day or tomorrow’s my last day, that is okay.’
I knew I lived my life exactly the way I wanted. Not exactly, but I knew I lived a very good life.
To me, it’s very sad to know I got to that point, but at the same time, it was good in a way because it helped me every single day.
Even though I’m still going through the same crappy side effects, it helped me learn to be present and just be appreciative of each day.
It just made each day a little bit easier to want to get up.
What got you through the tough times?
Actually accepting death because then I learned to appreciate every single day.
Were there any moments you had to advocate for yourself?
The only time I had to advocate for myself is when I was trying to educate people in the non-cancer world to understand that I still have struggles and that I get sad.
I guess the misconception is when you don’t look sick, people don’t think you’re sick.
There’s always a battle everyone’s going through.
Even at my job, I was still doing a great job, but because I was nowhere in the same capacity as I was before, it just looked like I was slacking even though I was not.
They were very supportive, but at the end of the day, the work had to be done. I had to be the one to do it, but I couldn’t even get to that capacity.
So important, and caregivers could be anyone. Mine was my husband, but it could be your mom, your dad, your sister, your friend, your neighbor, or another person in the cancer community.
One thing I am an advocate for is people don’t realize that caregivers go through cancer, too, and I feel like it’s harder for them than it is for the cancer patient.
I know how I’m feeling, and I have an idea of what I can handle and not handle.
But on their end, my husband wanted to do everything he could for me; he wants the whole cancer thing to go away, to be cured. They have that feeling of helplessness.
I always tell people they’re in cancer, too, and they see the struggle firsthand. But what sucks is that they’re helpless during the entire time. It affects them physically and mentally as well.
How did cancer affect your relationship with your husband?
It definitely solidified our relationship. I knew who I was marrying would be the greatest person ever, but this definitely showed the kind of person he is.
During tough times, people’s real personality and how they manage challenges come through. I would say cancer would have been much harder if I didn’t have him.
I just feel bad that he had to go through this. I know how much it hurts him to see me hurt, but if anything, it has brought us closer and it actually helped us really understand marriage.
It taught us how to communicate and how to advocate, when to step back a little, and really learn to be there for each other.
Any advice for cancer patients on how to deal with a spouse during treatment?
If you’re the cancer patient, check to see how your spouse is doing. They’re in it. They struggle with cancer just as much, and they need all the help they can get. I think people don’t realize it.
They’re in it, and they feel it, just in a whole different way. It’s always nice to check to see where they are and if there’s anything you can do for them.
I know it affected my husband a lot mentally. Even after chemo, he had panic attacks just because the whole thing is very hard.
They also need to seek that support. Just be there for them or have them see someone, too.
How did you deal with the financial aspects of treatment?
I grew up with the mindset of “hope for the best, plan for the worst,” so I actually have always been a big saver. It did financially impact us.
It’s always good to have fun with your money, but also learn to save and learn to strategize and plan out your finances. When it comes to times like health, you don’t want to take a step back on it.
I want to do everything I can for my own health or even my husband’s health or anyone in my family, and I don’t want money to be the reason to hold me back.
We were fortunate that my husband and I were big savers. What affected us the most is, I think a year after my diagnosis, it affected my husband to the point that he had a mental breakdown and had to quit his job.
Then there was a point where I quit my job, so there was a point where both of us were not working. It wasn’t easy. You just kind of have to thrive and use your best judgment.
For me, it was like, “Okay, it sucks that we may not having income coming in right now, but I think of the short-term sacrifice for the long-term benefit.”
Did you have any help preparing for outside of treatments (insurance, family cooking, etc.)?
We had insurance, which was good. Insurance is something you always have to challenge from time to time, so I would say if you are dealing with insurance, it’s always nice to have someone who checks that for you.
It’s work in [and of] itself. We have family that helps us from time to time. We also just learned to live a little bit more relaxed life and tried to utilize resources that made things easier.
For example, I can’t cook, so let’s sign up for Blue Apron. That way we don’t have to go out and grocery shop. Things are already preset for you, and really it’s just putting things together. Things like that.
Also, cutting down our expenses and thinking, “What do we want in our life? What can really fulfill us?”
It was really just getting more in tune with what we want out of life and using our resources.
Was there anything you wish you had known?
Honestly, no. The reason why is I think I was very thorough, and I treated every second opinion with every hospital as an interview.
I’m also very analytical and very process driven. I kind of tested each doctor. At the end of it, they ask, “Do you have any more questions?”
There’s some things that I would purposefully leave behind to see how quickly they would get back to me, or how they reacted to certain questions or when the patient responds to them.
That’s just my own personality. It helps me figure out who can I rely on when I need them on the spot. I felt like my life was on the line, and I wanted to make sure that this physician and her team were ready to take care of me.
I would like to share this with people: When you get a hospital bill, they don’t always go through insurance. My husband is an engineer, and I’ve done actuarial science.
We see numbers, and when we see it’s off, we see it very quickly. When we get a bill, we’re like, “Wait.” We notice immediately.
How did 3 out of the 4 doctor visits go through the insurance? Why am I paying the hospital when I really should be paying zero because I have already met my out-of-pocket deductible?
Those are the things I want to tell people. Just pay attention to your bill. Don’t assume you have to pay for everything.
Make sure you really look it out and vet it out. Then understand why you are being charged for this, because chances are there are mistakes. You don’t want to pay more than you have to.
Survivorship
Your “new normal”
You have to figure out your new groove.
I think the hardest part of it is that I didn’t even realize it, but it just kind of came naturally. I was constantly comparing who I am now to who I was before cancer.
I would be doing something, and I couldn’t do it as well. It’d be just frustrating. You have to learn this body that’s foreign to you.
The first year and a half was really hard. I was trying to get back to working full speed, and at the same time, I was still running my blog. I still had all these long-term side effects.
Understanding that I needed a community that understands what I’m going through, I started sharing a little bit more on social media so people could have a little glimpse of how, yes, I love fashion, but I’m also going through this thing.
They were the same age as I am, but we just feel lost. It’s a whole new world to navigate, understand, and figure out where you fit in.
I don’t fit in with other people my age because people are in different parts of their life now, while I had to put my life on hold to make sure I could live it.
The hard part is really, really, really trying to love this body, and it gets frustrating.
Then you have all the weight gain, and you still have these doctors visits in between. Everything just becomes overwhelming; your anxiety is just off the roof, and you’re having panic attacks.
I was just sharing with my onco-psychologist in my last visit that it took me up until recently to really feel like myself in a whole new way.
I really, really just love where I am and just feel very confident in who I am as a person.
Processing the cancer experience
It does affect a little bit of your quality of life, especially with the joint pains. I think the one that affected me the most is my wrist. I didn’t even realize how often I use my wrist.
I remember when I still had my day job, I was typing. Then I just couldn’t.
It was hard. I was holding a stack of binders, then I had to walk to my desk, and it just dropped because I just didn’t have the strength or my wrist was hurting.
Then you also experience what they call chemo brain, where things are just a little foggy and you can’t remember. Those are things that you can’t help. It gets very frustrating.
Certain things day to day used to come so naturally, and now I just blank out.
I remember I had to do this one process at work. Before cancer, I’m on it; I know it. I looked at the computer screen, and I was like, “I know how to do this, but I just can’t recall what to do.”
That was really sad because I obviously had to work at a different pace than what I was.
People don’t realize those are the things that you go through when you go through cancer treatment; your brain doesn’t fully function the same way, no matter how hard you want to try to get it there.
When I was back to work, I barely had hair, but overall, people said I look well.
When I’m struggling, no one gets why I am moving slower or why I can’t just do the work, meet those timelines, or get certain things to them right on the spot.
It takes quite a bit of time. That’s definitely a hard one. It’s a big adjustment to make. To this day, I still experience chemo brain, but I think I’ve learned to navigate it.
I honestly am so grateful for that role of patient navigator, because they have made the whole process easier.
I didn’t know what her role was at that time. During my biopsy, she was sweet and made sure I was okay.
When I was done and getting dressed, she came over to me and said, “I want you to know just because you have a biopsy doesn’t mean you have cancer.”
I was like, “Okay.” She hands me a handbook. “You should read this from the American Cancer Society.”
I was like, “Wait what? This is so confusing. She’s telling me I probably don’t have cancer, but read a book about having cancer?”
My primary care doctor was naming all these doctors I should start seeing. I thought I had everything written down — I was trying to be diligent — but I didn’t.
10 minutes later I got off the phone, and that same patient navigator called me and said, “Hey, Rach, I want to let you know I just heard the news.”
Then she lists all these doctors. It was like, “Oh my gosh, those are exactly who I’m supposed to call.”
She’s like, ‘Don’t worry, I already have them scheduled for you. Do you have a pen and paper?’
She literally did everything for me.
She said, “I just wanted you to know that’s my role. I am here for you. I will advocate for you, and if some of the schedules don’t work out for you, you have to let me know. I will make everything possible to make it work for you.”
To this day, I am still so grateful for her. I don’t know how I would’ve handled trying to figure out how to schedule appointments and making sure they were all aligned properly if it wasn’t for her.
Any advice for cancer patients going through a similar experience?
I would say don’t compare.
I think the hardest part when I was also diagnosed is that I would tell people what I had, and they would say, “Well, why aren’t you doing this?”
Or, “Oh, so-and-so is doing this. Maybe you should do that.” You’ve just got to listen to your gut. Do what works for you.
For me, looking for a second opinion is what helped me figure out my best plan of action, but it doesn’t necessarily mean that’s what you have to go through.
You’ve really got to listen to yourself and listen to your intuition, because that’s what will help you get through the process.
If you don’t feel comfortable from the beginning, it’s just going to make every single day much harder.
Last message to other patients
Know that it’s a process and you’re going to have hard days. It’s going to be hard, but know that you’ve got to listen to your body and let it recover.
It’s going to take time, and it took me 3 years to get to where I am, and I still struggle day to day. But just know that there are good things that happen along the way.
As crappy as cancer is, there are good things that happen. I found friendships that I never ever thought I would ever have come across if it wasn’t for cancer, or really found the people that really care about me and are really there for me.
So there are silver linings, and I would say even in your darkest moments, find them.
Even if it’s a stranger that bought you a cup of coffee or you find a penny on the floor, those silver linings mean something.
In her story, Amelia also describes how she navigated through several issues, like managing hair loss, the significance of getting a mastectomy tattoo, and survivorship.
When I lost my hair, I had a new confidence. I don’t know what it was, but maybe it was the ‘battle’ mentality. I was really confident with my short, buzzed haircut.
That stuck with me for a long time. I don’t get nervous anymore.
It’s almost like the opposite of the story of Samson. When they cut his hair, he lost his power, right?
When I cut my hair, I felt like I gained so much power.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis & Testing
What were your first symptoms?
I found my first lump back in 2002. I was in my 20s then. Ever since then, I’ve always taken the time to do a monthly breast exam. I had a lumpectomy back then.
This time, I had just turned 40. I was due for my mammogram that year. I was lying in bed, doing a normal self-exam.
I noticed there was a lump in a different spot than the first one. My first lumpectomy was on the left side of my nipple. This was on the right side.
I felt the lump and knew it hadn’t been there the month before. It felt different than the first one, which had been benign.
I don’t know if it was because I’m more knowledgeable about breast cancer now since awareness is everywhere these days or what, but I felt a sense of urgency about this one.
I had heard that it’s better to do the self breast exam when you’re lying down if you’re small-breasted.
They usually recommend you do it in the shower, but if I had been doing it standing up, I don’t know that I would’ve found it.
When I was lying down, it was more prominent, and I could feel it. It wasn’t big. It was less than a centimeter.
Primary care doctor visit
I had just seen my primary care right before turning 40. I called her and made an appointment.
She fit me in that week. She did a breast exam, too.
She said, “I don’t want to scare you, but since you’re 40 anyway, let’s go ahead and do a mammogram and ultrasound.”
Referral to a breast surgeon
After the results came back abnormal, I met with a breast surgeon. The immediate next step was to do a lumpectomy and try to get it out.
Then they did a biopsy on it. It was found to be cancerous. My first thought was a double mastectomy.
At that point, I was like, “I’m 40. I still have another 40 years. I don’t want to leave anything to chance.”
I wanted to get everything out that we could possibly get. Because I made that decision so quickly, I didn’t talk to an oncologist until after that surgery.
It was like a normal doctor appointment. Maybe that’s because I was trying to downplay it and not freak out, but it was really normal. My husband was with me. I wasn’t nervous or scared.
Can you walk us through the lumpectomy?
It was pretty easy for me. I’ve had 2 C-sections and had the right side of my thyroid removed, so it was no big deal.
It’s just a small incision on the site of the lump, so you have stitches when you wake up.
I didn’t really have to prep for it, except I couldn’t eat or drink anything starting the night before, so I was starving the day of the surgery.
Surgery took 2 hours, and it was outpatient, so I was home that afternoon.
I don’t remember waking up and being in a lot of pain. That’s the great thing about modern medicine. I think I only came home with a prescription dose of ibuprofen or something.
When were you officially diagnosed?
Cancer wasn’t even on my mind yet. It didn’t really sink in until I got the call from the breast surgeon right after the lumpectomy.
She didn’t say it on the phone, but she did say she needed to see me right away. That’s when I was like, “Okay, this is cancerous.”
The first person I told was my 13-year-old daughter. That was the first and only time that I cried throughout the experience.
We didn’t even know for sure until I went to see the surgeon again, but when I had to tell her it might be cancerous, I got emotional. I just had a feeling.
My husband and I went in on July 19th. She came in and had a diagram of what different cancers look like. She was showing me the ones I have. She wrote down all the treatment options on the back.
We had already done a lumpectomy. I had decided to do a double mastectomy and didn’t know if I would need chemo.
If I hadn’t decided to do the surgery, it would’ve been radiation and chemo. We didn’t know for sure what type I had, so we didn’t know if chemo was an option.
She just really wanted to get our minds set on dealing with cancer now.
He works from home, which is great because that’s how he was able to be with me. I took the call in my living room.
My kids were home on break. I literally just turned around and told him, “The doctor wants to see me immediately.”
I have kind of a short attention span, so having him there with me for appointments was great. He would remember things that I don’t remember.
I couldn’t take notes and try to listen at the same time, so he was like my own personal notebook. He probably asked more questions than I did.
I was just going through the motions. I didn’t see the point of getting more information on things if I was going to have to go through them anyway, but he wanted to get all the information. He wanted to know side effects to look for and things to do.
I have a weird medical history. I actually had a heart attack after my second pregnancy. It was pregnancy-related.
Because of that, they wanted to make sure my heart could handle the mastectomy. I went to see a cardiologist first. Then I saw a plastic surgeon because I wanted to do immediate reconstruction.
I also saw a genetic counselor. I didn’t see an oncologist until after my mastectomy.
Describe the genetic counseling
My nurse navigator planned everything for me. She knew the people I needed to see and made the appointments for me. One of those was a genetic counselor.
It was to figure out if I had the BRCA gene mutation, and I didn’t. I wanted to know if I needed to get my daughters tested. Also, had I tested positive, the approach would’ve been different.
It was a simple process. I can’t remember if it was a simple blood test or if I had to spit in a cup or something. I had been prodded and pricked so much that it was no big deal.
The prep was a little more involved than the lumpectomy since I’d be staying in the hospital for a few days. I had a list of things to bring to the hospital, like my phone charger and things like that.
I had nodes removed on both sides, so I had limited mobility in my arms after surgery. Especially with all the dressing they have on you, it’s hard to really do much.
I brought a ton of pillows because that’s what they told me to do. They wanted me to put one on my chest when we were driving back home from the hospital.
We knew I was going to have drains attached to me for a little bit. People warned us that there might be leakage.
Before we left, we set my chaise up in my project room. We put a bunch of pillows on it, and it was low enough to the ground that I could get up easily.
That’s where I stayed for a few weeks after the surgery. If anything leaked, it was easy to take care of.
How were you feeling before surgery?
I wasn’t nervous. I didn’t see a reason to be nervous. I already knew it was cancer. I already knew it could kill me. I had a ‘going into battle’ attitude.
I was just ready to go. I wanted to get everything over with. It might just be my coping mechanism, but I went into survival mode.
I also knew my kids would be watching. If cancer can happen to me, it can happen to anyone. I wanted to show them that cancer is not as scary as it used to be. I wanted to be very upfront with them. They saw everything.
I wanted to reassure them that cancer is not a death sentence anymore. It still takes many lives every year, but my case was doable. Half of surviving is having a good attitude. I didn’t want to victimize myself.
How long was your recovery at home after the mastectomy?
I took full advantage of my short-term disability. My employer covers up to 12 weeks of full pay. I think I was ready to go back to work after 10 weeks, but I wanted to make sure that I was good to go.
I was up and moving around the day after I got home. I just couldn’t really lift my arms. I was doing a lot of little exercises to increase my mobility. After the 12 weeks, I went back to work.
Chemotherapy
You had to decide if you wanted to go through chemo or not
My mastectomy was in August. After that, we did an oncotype test. They wanted to make sure we had the right approach.
The oncotype came back 22. That’s in the gray area. From zero to 18, no chemo is needed because it doesn’t make a difference in your recurrence probability.
From 19 to 30-something, they don’t have enough evidence to show that chemo would reduce your chance of recurrence. It’s kind of up in the air. 40 and above is when you definitely have to have chemo.
I was ready to throw everything I had into this. I wanted to do the chemo.
My husband was very adamantly against the chemo. He saw one of his friends die from cancer. It really left an emotional scar for him. He didn’t want to see me that way. He didn’t want to see me lose a lot of weight, lose all my hair, and be sick all the time. He was not convinced that it was the right thing.
We went to see the oncologist then. She couldn’t give us a recommendation. She said it was completely up to us. I knew that whatever decision I made, I had to be okay with it.
I didn’t want to live with regrets. I didn’t want to ask myself what I would’ve wanted to do differently.
My husband and I just needed to come to a consensus. I know I’m the one who was going through the cancer, but he was the one that was going to be right there beside me the whole time.
It’s such an emotional task to ask your loved ones to take care of you.
We did some research. I created a typical pros and cons list. I didn’t want to leave anything off the table. Even if chemo only reduced my chances of recurrence a tiny bit, I still wanted to do it.
One of the things we learned was that the type of chemo cocktail they were going to give me actually makes you gain weight because of the steroid. Little things that helped sway our decision.
I went to another doctor at another facility for a final recommendation. She looked through my history. She said, “If you didn’t have the lumpectomy in 2002, I probably would’ve said no to chemo, but since you have a history of growths, I would recommend it.”
Before this, I had told my oncologist to schedule chemo just in case. I was at my 89th day post-diagnosis when I got the recommendation.
They told me I had a higher chance of surviving if I started chemo within 3 months. I literally waited until the day before the last day, but then I went in for my first session.
Deciding whether or not to do the chemo was the hardest part of the whole process.
What was your chemo regimen like?
Because of my oncotype and how small the cancer was, my oncologist wanted to go for TC. That’s Taxotere and cyclophosphamide. It’s one of the least toxic chemos there is. Mine was only 4 infusions.
I did one infusion every 3 weeks. It wasn’t even a full day. I would get to the cancer center at about 9:00 a.m. I would be on the chair from about 10:00 a.m. until 1:00 p.m., and be out about 30 minutes later. If I could’ve had any type of cancer, this was the easiest one I could’ve had.
The effects from the chemo were still the typical things, though. I lost my hair and everything, but the chemo itself was not that bad. It was a big deal, but it wasn’t.
I did everything my oncologist told me to do. I made a little chart with all my meds on it and would put a checkmark next to each one every day. They have apps on your phone for that now, but I like the physical list.
I stayed on top of my medicine. I rinsed my mouth with salt water to prevent mouth sores and all that. I did everything I could.
The only really bad side effect I had was the fatigue. I was so tired, and I wasn’t expecting that level of fatigue.
I also lost all my taste buds. Everything tasted like cardboard, which sucked because I love to eat. The only things I could taste were sweets.
People started sending me fruit arrangements. Someone sent me a bunch of cupcakes. I ate a lot of fruit and a lot of desserts. Anything salty didn’t taste like anything really, or it tasted horrible.
My diet was pretty bad because I was eating mostly desserts.
It took a few months for my taste to come back. My last infusion was in December. It wasn’t until the following year that food started to taste good again.
People on forums can scare you. I read something that said, “You’re going to hate the foods that you loved the most after chemo.” Thankfully, everything went back to normal, but I just eat more sweets now.
I don’t want to downplay the treatment and the whole experience, but it wasn’t like life was throwing me anything I couldn’t handle. Everything was kind of doable.
Do you have any advice for someone who’s about to go through chemo?
Take it easy. Don’t set the expectations for yourself so high.
Chemo’s effects can be cumulative. Right after your first session, you might feel great, but fatigue, hair loss, loss of taste. and everything gets worse and worse as you go on.
For me, I overdid it after my first infusion. I was still working out. After my second one, I knew my body was trying to tell me something. I knew I couldn’t pretend that I was still normal. I binged so many shows on Netflix. I just chilled out.
Did you work through chemo?
I went back to work in November in between my last 2 infusions, and my head was shaved. People noticed. obviously. I let my coworkers know that I wouldn’t be able to do things the way I could before.
It took forever for me to walk through the parking lot. I’d get winded going up the steps. Fortunately, they were very understanding. I was very open about my diagnosis, mainly to set the expectations for what I could do.
I chose immediate reconstruction, but because I didn’t have enough fat and tissue to build the new breasts, they added tissue expanders. My breast surgeon and plastic surgeon had worked together during my mastectomy.
As the breast surgeon was taking out tissue, the plastic surgeon was placing the expanders.
In between chemo infusions, I would go see my plastic surgeon, who would add more fluid into the expanders. It wasn’t painful, but it was definitely very uncomfortable. There was always a numbness or tightness in my chest.
After chemo was over, we had to wait about a month to do the swap from the expanders to the implants to let my body heal.
What was the breast reconstruction surgery like?
After going through the mastectomy, it wasn’t too bad. I was just excited. I told myself, “I’ve gone through cancer so I can get new boobs.”
I don’t remember the recovery time because I was back to work. I might’ve taken 2 days off or something like that.
With everything that I went through, this was almost like a consolation prize.
It’s not that I didn’t like my breasts before this. My husband and I jokingly made a pact years ago. I would only do breast implants if we had a million dollars in our bank account.
It’s such a big expense and it’s unnecessary, so unless we had a million dollars to blow, I was never going to do it. Since cancer was doing this to me, I wanted to do it right and get something out of it.
I’ve heard stories where people just go flat, and that’s not a bad thing at all. Breast implants get recalled sometimes. There was one recently, so I went to my oncologist to check mine out. Luckily, mine aren’t ones that were part of the recall.
Of course, I don’t want my implants to be recalled, but if I do wind up having to go flat, I’ll be okay with it. It really doesn’t define me. It’s just a fun thing to have for me. Add in the fact that I didn’t have to pay thousands of dollars for them. It was something I wanted to do.
What about the nipple reconstruction? How was that?
I wasn’t sure if I wanted the nipple reconstruction or not. Mine had already served their purpose. I already breastfed 2 kids.
I was happy to be able to wear a t-shirt and not having to worry about wearing a bra ever again.
To me, it wasn’t a big deal. I was fine with looking like a mannequin, but I do have a husband.
He thought it looked a little weird. We waited 7 months before doing that reconstruction. I don’t remember why we waited so long, but I did have them done.
The surgeon took part of the skin and recreated the nipple. The reconstruction didn’t take, though, so now I don’t have nipples anyway. The nipples he created are flat now. I don’t know if that’s just my body or what, but I wouldn’t necessarily recommend it.
He spent all that time and I was in surgery, and still no nipples. I was supposed to get the 3D tattoo for nipples, but I had to move, so I’m in the process of finding a new tattoo artist that can do it for me.
Mastectomy tattoo
I don’t have an elaborate tattoo like most people get. That’s only because I want to save room for my nipple tattoos if I do get them, since they’re for my husband. He’s gone through so much, so it’s the least I could do.
When I was deciding to get the mastectomy, I was looking online at all the mastectomy tattoos people had gotten. They’re all so beautiful.
I didn’t want anything that would show too much because I work in a professional setting. I don’t want to have to worry about what to wear to work because of a tattoo showing.
Right after the implants were put in, everything was still so numb. I decided the best time to get a tattoo was when I couldn’t feel it.
I have a love symbol since I’m from Philly. I wanted something to remind me of where I come from. It’s on the left side, which is the side where the cancer was first found.
Instead of the “o,” she put the breast cancer ribbon, but I didn’t want it to be pink. There’s good and bad intentions behind the whole pink thing, so I wanted polka dots instead.
Getting the tattoo was such a breeze. I was mostly excited. It took me a while to find the artist. I wanted it to be a certain style. She’s really feminine and all tatted up.
The polka dot thing was kind of her signature. She does a lot of 50s throwback designs.
What does your tattoo mean to you?
It’s cathartic. I survived. I left Philly behind. I left my cancer behind.
It’s a good reminder of where I’ve been and how that doesn’t define who I necessarily have to be.
Survivorship
What’s the ongoing follow-up protocol?
There was never an official remission conversation. My breast surgeon took everything that she could see, and if there were any cells leftover, that’s what the chemo was for.
After the mastectomy, there was technically no evidence of disease. I haven’t had any scans in a while.
I’m on tamoxifen. I do blood work rarely. For now, I just go see my oncologist every once in a while.
Sometimes I question how and why my experience was so easy. It’s that sort of thing that makes it so dangerous to compare your experience with others.
What is your “new normal” after cancer?
When I lost my hair, I had a new confidence. I don’t know what it was, but maybe it was the “battle” mentality. I was really confident with my short, buzzed haircut.
That stuck with me for a long time. I don’t get nervous anymore. Public speaking used to bring me to tears, but now I’m good.
When my job told me I had to move from Philly to Atlanta, I thought it was no big deal.
It’s almost like the opposite of the story of Samson. When they cut his hair, he lost his power, right? When I cut my hair, I felt like I gained so much power.
I was in Georgetown like 2 weeks after my surgery, around Valentine’s Day. I was walking in a parking lot to my car after dinner with a girlfriend.
It was 10:00 p.m. in D.C., so the place was buzzing. I saw this guy walking towards me. It was a cold day, so he had a winter cap on. I turned around, and he was right next to me.
He kept my door open, and he had a gun in my face. I started to scream. It was like, ‘I’ve gone through cancer, and you’re going to try to take my life with a gun? No way this is going to happen.’
I just kept screaming. There’s so many people in that area, so I guess he got scared and took off. There’s no way that I would give up now. If I hadn’t gone through cancer, I don’t think I would’ve acted the same way.
I think I would’ve been too scared and mild to do anything. Instead, I was like, “Screw this guy! Who does he think he is?”
My hair gave me a sense of confidence.
What was the lowest point you had?
It was when I was told I was told I would be moving for my job right before reconstruction. That was the scariest thing for me because I had to leave my medical team behind.
I really owe my life to them. This is probably a daily thing for them, but I really attribute where I am to how they dealt with everything.
They were very caring and professional. I didn’t feel like I was a number. I felt our interactions were very individual. They all made it feel like they were very committed to me.
I was not ready to leave them. I saw them so often. When I had to leave, it was like breaking up. That was my lowest point.
How did the cancer affect your relationship?
This is probably bad, but I didn’t really put any focus on our relationship because I didn’t feel like I had time to deal with anything else. I just needed to focus on getting better.
Once I was better, I knew I could be in the relationship again. I needed to focus on that to be present in the long-term. Our relationship took a break.
We couldn’t be intimate because I was going through a bunch of medical procedures. This is where “for better or worse” comes into the picture. He stuck around, and here we are on the other side.
There wasn’t any question or doubt in my mind that he was going to be there. It was expected. I knew he would be here.
I was sleeping in the project room and not in the bed with him, because I didn’t want to leak all over everything. Maybe I put way too much faith in our relationship, but here we are.
He never gives me any doubt. We’re committed, and if the roles were reversed, I would do the same thing. I wouldn’t say that cancer made us stronger, because we were already strong to begin with.
He’s the typical old school guy. He doesn’t see the need to seek professional help. I kept telling him, “I think you might have some PTSD. Maybe we should go see someone.”
Everyone is different. I can’t force him, but so far he’s still okay. I guess maybe he doesn’t need therapy right now, but maybe down the road he will. I don’t want him to go through any depression or anxiety.
Now that I’m healthy again, we have the rest of our lives, so I want both of us to be in a good mindset and be okay.
Any advice for married cancer patients?
Appreciate your significant other. Appreciate the people around you. My husband could have left. My kids could’ve had mental breakdowns. Appreciate the people that stick around you.
I didn’t see anyone leave, but appreciate the things that they go through. I was physically the one going through it, but they were going through it in their own way. They came out the other side.
When I told my daughter, all I knew was that I had a lump and the doctor wanted to see me immediately. I didn’t know my stage. I didn’t even have the official diagnosis, but I had a feeling. I knew that wasn’t good news.
I’m all about transparency. My kids were old enough to see and understand.
It might’ve been different if they had been younger, but I didn’t want to paint a picture that everything was just totally fine and normal. That’s why I let myself be vulnerable that first phone call when I cried.
As long as my kids knew what to expect beforehand, it was okay. We didn’t make anything a huge deal.
We didn’t freak out about me being home or losing my hair. They were in the bathroom when I shaved my head. We were trying to show them that this was just a part of life.
I think we maybe downplayed it too much. They don’t think it’s a big deal. Even if I tell them now that I have to see my oncologist, they’re just like, “Yeah, okay,” and shrug it off.
I joke around with them and say things like, “Wait, you don’t want to give me a hug? I had cancer!”
We’re still dealing with the financial side of things. We have a higher deductible, but it covers 80% of everything. Once you max out the deductible, everything is covered.
I think my deductible is about $6,000. That’s what we’re dealing with now. Every year, we max out because of one thing or another, so that’s something we just have to plan for.
We’re in a good enough financial place, though, that it was never really a big stress for us. If you could pick one perfect person to go through what I went through, it would be me.
Financially, we could handle it. My body could handle it because I was young and healthy. Mentally and emotionally, I could handle it.
This is where I do think that Obamacare is a wonderful thing. I don’t want to get too political, but health care should not be a choice. It is a right.
You shouldn’t have to be stressed out about how you can pay your bills because you’re insurance won’t cover. That’s such a foreign concept. I really wish that everyone could have the ability to go through this the way I did if they’re going to have to go through it.
Finances should be the least of your worries when you’re fighting cancer. You don’t want money to be impacting your treatment decisions.
Do you have any advice for someone who has just been diagnosed?
Every cancer is different. You need to make your own decisions based off of what is right for you. There is no right or wrong. Just be confident in your decisions. Don’t look back.
I had the option of doing cold caps, but it’s like $2,000, and you’re always cold. I hate being cold. I just decided to be fine with losing my hair.
Before my first infusion, I went to a hair salon and got a really short haircut just to test it out. Then we did the first chemo. I could feel hair starting to come out.
I would run my hand through my hair, and clumps were coming out. I didn’t want to experience that for real because it was kind of unnerving, so I buzzed it.
It was around my second infusion that I shaved my head. Even with the buzzed haircut, it was coming out so much.
I didn’t want it to be traumatizing for everyone. I didn’t want to see hair on my pillow case, and I didn’t want my kids to see hairs everywhere.
It was liberating to get rid of it. It was a reminder of the bad things that chemo was doing to my body. It was like I was being proactive and doing it first.
Right before my last chemo session, I knew I was never going to have a bald head again, so I got a henna tattoo over my whole head. That was a really cool experience.
Did you like having short hair?
I knew I was never going to have short hair again, so I was kind of excited to try a bunch of different short styles. My husband was really happy, too, because he’s always wanted me to have a pixie cut.
I was taking advantage of that. I didn’t want to focus on the negative things. I still don’t. I want to focus on the positive, because that’s something I can control. I can control my attitude.
Do you have any advice on how to deal with the hair loss?
Embrace it. It’s going to happen. Even with the cold caps, it still can thin out. Everyone is different, but after you accept your circumstances, you’re in a better place to tackle it.
If life is dealing you these cards, you have to accept it. I only have so much energy. I’d rather spend that thinking positive thoughts.
