Cat’s Stage 2B IDC & DCIS, ER+ Breast Cancer Story
Cat shares her story of stage 2B breast cancer, getting diagnosed after feeling a lump in her left breast. She details how she got through a bilateral mastectomy, chemotherapy, hormone therapy, and recovery.
Cat also highlights how she managed hair loss, what support was most helpful to her, and how she dealt with parenting while going through cancer.
The biggest thing you can do for me in this process is don’t ‘at least’ me. That means no, ‘Okay. At least you’re stage 2 and not 4. At least you’re alive. At least…’
That drives disconnection.
You don’t have to have magic words. You don’t have to try to fix it. You can’t. You can just say, ‘Dang, that’s really hard.’
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 started to get a bunch of pain in my left breast. I had pretty fibrous breasts before all this. I would find little lumps here and there, but this one was huge. It was about 7 or 8 cm. I was getting pain radiating from the center of it. When I felt it, there was clearly a lump.
My boyfriend at the time felt it as well and told me I should go get checked out.
How did you get diagnosed?
At first, I went to Planned Parenthood, and she referred me to an ultrasound place. I went there, and the guy there said, ‘I can’t diagnose you with cancer, but it really doesn’t look great.’
He took me back and showed me what it looked like. He sent me to a biopsy place, where they did a biopsy on the left breast in my lump and on the right breast as well, because I had little calcifications in my right side.
How did you process the news of cancer?
I don’t remember the moment I was diagnosed, but I remember the moment after the ultrasound. I knew then that I had cancer.
He didn’t diagnose me obviously, but he said, “This is what cancer looks like.” I got out of that ultrasound and just started crying. I was a mess the whole way home.
That was not something I was prepared for. I thought they were just going to numb me real quick, go in with a tiny needle, and be done.
I had brought my 40-pound bag of school books and stuff because I was in school and was going to study while I waited. They told me I wouldn’t be able to carry that to my car. I also had to go pick up my kid later, and they told me I wouldn’t be able to lift her.
I went back, and they put needles in my left and right breast to try to numb them. They have this big needle that’s hollow. It pulls out a piece of the biopsy.
The first pass was okay, but by the second one, I wasn’t numb anymore. I felt the second one, and I was in a lot of pain. They quickly stopped and gave me more numbing medicine.
Then they took me back, and I had to lay on my left breast, which was in a lot of pain. I had to lay flat on this machine while they dangled my right breast down.
You’re on this machine, and your breast is in this little hollow cavity in the machine. They went in with a needle from the side after they had numbed it again. After that, I had to get up and do a mammogram.
They had someone behind me, and I fainted during the left one because it hurt so bad. They lifted my bag to my car for me. People had offered to come with me, but I was like, “No, I’ll be fine.” I didn’t know it was going to be that big of a deal.
Mastectomy
How was the meeting with the surgeon?
I met with my breast surgeon and plastic surgeon. I hadn’t met with my oncologist yet because I didn’t need radiation or chemo before surgery.
I got diagnosed at the end of June, and I went on a trip for 2 weeks in July to see my family. They said it would be fine if we waited. I didn’t want to schedule my surgery until I was done with my summer semester in school, so we waited until August for that.
What made you decide to do a bilateral mastectomy?
I had a choice. I could keep my right breast and nipple, but I couldn’t keep either on my left side. The whole thing had to go.
I decided to get the full mastectomy because I had breastfed before, and it was going to be impossible to recreate the shape of my right breast with an implant because it was much lower and not round. I was worried about it because of the calcifications, too, so I got the full bilateral surgery on August 1, 2018.
What was the preparation for the mastectomy?
The preparation was having to go buy Hibiclens. It’s a special soap you use all over your body, especially on your chest, for the whole week before.
The prep for the surgery was really just a lot of mental prep, though. My boyfriend and I went on an 8-mile hike the week before.
We took really pretty pictures and just did life. I thought then that I was just going to get a bilateral mastectomy and be done. I thought I’d get a free boob job and be done with it.
The day of the surgery, my stepmom flew out. She got me special t-shirts, and we went to the hospital. My stepmom, my ex-boyfriend, and my boyfriend all went back with me, which was super awkward, too. My stepmom and boyfriend ended up staying in the room with me.
The anesthesiologist came in, and I decided to get a pain block. It’s kind of like an epidural for your upper body. I got that done right before surgery, and it was painful, so of course I passed out.
How did the surgery go?
Surgery was very successful. They got all of my breast tissue. They took some lymph nodes from my left side, too, so they could biopsy those.
They found out I actually had 2 separate tumors. The invasive ductal carcinoma was 5 cm, and the in situ was 3 cm. I was a combination type. I didn’t find that out until after the surgery.
I also had expanders put in during the surgery, and once a week, my surgeon would fill them with fluid. They weren’t painful, but they were uncomfortable.
How was the recovery in the hospital?
The hospital recovery was really rough. Again, I don’t handle pain really well. I had one of those plastic beds that’s supposed to make sure you don’t get bed sores, but I was only in the hospital for one night. I kept slipping down the bed, and you can’t use your chest muscles after surgery.
They kept telling me to use my stomach muscles, but it kept spreading up to my chest, so I couldn’t sit up on my own. My stepmom stayed on the couch in the hospital room with me and put her arms behind my back so that I could just sit up.
I fell asleep at 8 p.m., and they didn’t wake me up to give me painkillers. When I woke up in the morning, I was screaming because it hurt so bad. I didn’t feel like the nurses did a great job. I don’t remember much else other than that.
How was recovery at home?
Recovery at home was rough, too. I had drainage tubes on each side. My left side tubs were more painful than even the stitches I had across my chest. I had about a week or so recovery at home. My stepmom took care of me.
We would call my plastic surgeon because I was just in so much pain. He would ask us to send pictures, and he said it looked normal. I ended up back in the hospital because I was in so much pain.
I recently found out that my stitches, which are supposed to create a hammock for your breast, just didn’t heal properly. Recovery for me took about 2 or 3 weeks in total. It was a slow process.
Chemotherapy
How did you find out you needed chemo?
We got my oncotype back for my tumor, and the oncologist said I had a 16% chance of getting an incurable type of cancer, which seems kind of low, but the general population has a 2 or 3% chance.
She gave me some options. I opted to do chemo for 4 months. I don’t remember which drugs I got because I was out of it at that point and was scared and sad. I didn’t know I was going to need chemo. That was hard. My boyfriend and I both cried.
What were the chemo infusions like?
I wore my chemo crown, which was a woven, golden crown, and my chemo shirts to each infusion. The first time I went, I had all my hair, and I felt fine that whole day. Then I went home, and they had given me a pack of Neulasta. It increases your white blood cell counts.
After that is when I started to go downhill. I got really really sick. I was throwing up, I was dehydrated, and the bone pain was so bad. I gave birth naturally by choice, and it was worse than that.
It felt like my hips were expanding and my bones were breaking. That week, we were in and out of the hospital maybe 10 times.
For the chemo infusions after that, they halved my dose of Neulasta. The infusions themselves were always really pleasant. It was open, and there were other people you could talk to.
Volunteers walked around with snacks. It was hard, though, because I was always the youngest one there. There was never anybody my age.
Even with the reduced dosage of Neulasta and switching to the infusion, I still had a horrible reaction. It wasn’t as bad as it had been, but I still had to be in the hospital.
Describe the hair loss
After that, my hair started to just come out in clumps. My boyfriend was out of town that week. My ex-husband came over, and we shaved my head as a family that night with my kid.
We shaved it into a mullet first and stuff like that. We went out to dinner, and then I went home. My boyfriend came home and brought me a wig. He would wear it during my chemo treatments and make people laugh.
Describe experiencing the hair loss
Hair loss wasn’t emotional for me at first. It was just another thing I knew was coming and that I had to do. The thing that gave me anxiety was seeing clumps just come out. Being able to grab my hair and just have it come out was so strange.
After a while, it started to wear on me because people could tell I was sick. I was really tired of people being able to tell I was sick.
The loss of my eyebrows and eyelashes was incredibly rough. I didn’t have to shave my legs, though, so that was nice!
The exchange surgery went really well. I didn’t have to have drainage tubes. It was so much easier than getting my breast tissue removed.
The expanders would turn and move, and they were so uncomfortable. The surgery corrected that, and I finally had implants.
I still struggled to do stuff, and it was frustrating. I got really depressed during that time because at that point, I just wanted to get back to my life. It went really well, but emotionally, it was tough.
You started tamoxifen
Tamoxifen suppresses your estrogen, and it’s just a pill you take. My tumor was ER+, so I started that after the exchange surgery. I didn’t need radiation, so that was good, but tamoxifen was very rough.
I went into menopause. I had bad hot flashes and crazy mood swings. I didn’t really notice it a whole lot because I had my exchange surgery around that time, too.
I was on tamoxifen for about 11 months. I started to get really bad suicidal ideation. I couldn’t get out of bed, shower, or do anything. I went off of it for a month, and I felt so much better.
They put me back on it, and I was having the same problems. I went to the hospital and told them, “I’m not going to do anything, but this is happening.”
They took me off of it immediately, and currently I’m not on anything. I feel more like myself.
You have post-mastectomy chronic pain syndrome
In May of 2019, I had a fat transfer surgery. That was my last surgery. They took fat from my stomach and put it up top to just kind of shape things out. I couldn’t get it done during the exchange surgery because I lost too much blood, so they waited until May.
After that surgery, right where my left drain had been, I started to get extreme spiderweb pain across that portion of my body. I ended up in the hospital again. I’ve been to the hospital for that about 5 times. I had a doctor basically tell me I was a pain pill addict at one point.
I went and saw my plastic surgeon in November of 2019, and he said I have post-mastectomy chronic pain syndrome. I’ve done acupuncture, chiropractic care, yoga, massage, and it’s just still not getting better.
I went and saw my oncologist, and she referred me to a different plastic surgeon. She started me on an ibuprofen regimen, and I’m supposed to get PT/OT soon because I’m getting frozen shoulder syndrome from it now.
I have a consultation for a stellate ganglion block soon. It’s basically like an epidural for your neck and shoulders. I’ll get that done hopefully soon. It’s still a relatively new procedure, but I hope it’ll work for me.
Support & Emotions
Can you talk about your support system?
My biggest supporter was my boyfriend, who is now my fiancé. We met at a brewery a few months before I got diagnosed.
Our dogs got tangled up, and we started talking. He, without knowing me super well, took care of me. I stayed at his house. He flew my family out, cooked, cleaned, and supported me all while working a full-time job and traveling for work.
My ex-husband was a very good support as well. He took my daughter for a good 80-90% of the time during my chemo because I couldn’t care for her myself.
My stepmom and dad both traded places coming out for that entire period of time. My best friend came out for a whole week and took care of me, too.
Without them, I would’ve been in an assisted living facility because I just could not take care of myself. I couldn’t do it alone. They were invaluable to me. Emotionally, I don’t know what would’ve happened to me without them.
I’m also part of a group called The Breasties. I’m an ambassador for them now, and they were a great support, too. It’s been so important to have that. Because I’m so young, it’s very difficult to find people my age who understand chronic disease.
The women truly understand what I’m going through, and that’s amazing.
Do you have advice for people who want to help but don’t know how?
The biggest thing for me was “at leasting.” I got it from Brené Brown. She has this video on empathy vs. sympathy. I made all my caregivers watch this video.
I said, “The biggest thing you can do for me in this process is don’t ‘at least’ me. That means no, ‘Okay. At least you’re stage 2 and not 4. At least you’re alive. At least…’” That drives disconnection.
You don’t have to have magic words. You don’t have to try to fix it. You can’t. You can just say, ‘Dang, that’s really hard.’
Connect with yourself and how you feel when you’re at your worst, and understand that that’s how the patient is feeling.
Sometimes somebody just needs you to validate their feelings and for you to just cry with them.
How has cancer affected your relationship with your fiancé?
We already communicated really well. We work really well together. We talk about everything. It was very difficult, though. We had known each other for 2 months, so he went from an equal partner to a caregiver.
It wasn’t sexy. He stuck with it, though, and loved me so much. I still gave him love in ways I could.
After we were done with chemo, which was the hardest part, we said, ‘We need to connect.’
We traveled. We went to Washington, Little Rock, and we went to see both our families. We went camping, hiking, biking, and to New York. We just got back from Costa Rica. Travel has been a great way for us to connect and get to know each other.
It’s incredibly difficult. When I was diagnosed, I thought about what letters I would write to her if I wasn’t here. I wanted to write her a letter for the day she went to college, got married, or had a baby. I wrote all those in my head.
Once you’re done with it, you think you’ll be done, but you’re never done. For her, she knows what chemotherapy was. She was allowed to wash her hands, touch my breasts, and see them the whole time.
I didn’t hide it from her because I didn’t want it to be mysterious. She does get confused, and she sometimes thinks that everyone has to get chemo when they get older.
My ex-husband would bring her over and let her sleep over, and he would sleep on the couch and take care of us. It was really sweet.
I want life to hurry up. It’s very much rushed in my head. Before my boyfriend proposed, I was very upset that he hadn’t. It just feels like there’s not much time left.
My new normal is being so happy that I’m cancer-free right now (as far as I know), but I’m also always on the lookout and preparing myself for the day when they say it’s back.
It’s both amazing and awful at the same time. It’s amazing that the first time I was able to run in the woods after all this, it felt like the first time I’d ever run before. That part is incredible. I’m able to see the world through new eyes. Everything is more beautiful and heightened. It’s also stressful, though, because you never know if it’s going to come back again.
How do you manage the fear of recurrence?
I exercise a lot. I do HIIT classes, boot camp classes, barre, and I mountain bike. I go to therapy once a week as well.
I talk with my fiancé about it when I’m feeling upset. I call him and my family and talk. I meditate every morning and night. If I need a day to just not do anything, I just take it.
What advice do you have for someone who has just been diagnosed?
Ride the waves. Ride the emotional waves and talk. Talk to anyone and everyone you can about it, because you need to get those feelings out. You can’t bottle them up.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
It’s definitely a roller coaster. There’s going to be ups, and there’s going to be downs. In some ways, you’ll appreciate the journey. Looking at it on the other side is just totally different. It’s amazing, and you just appreciate more, but it’s not easy.
You have to talk to somebody if you find yourself just staying in a down place. You need to.
Tina C.
Diagnosis
What were your first symptoms?
I remember at my wedding thinking something just seemed a little different with my breast. That was in April of 2013.
The nipple on the right side had sunken in a little. I thought, “Oh, that’s odd or strange,” but I really thought, “Oh, getting old sucks,” even though I was 37.
In my mind, it didn’t really click, even though my mom has had breast cancer 2 times. It was always a lump, so I just ruled it out for a little while.
Another couple of months passed. Something happened with someone at work, totally unrelated to breast cancer, but it just made me take inventory of my own health.
I was like, “You know what? This hasn’t changed with my breast. I don’t know what’s going on, so I’m just going to go have a talk with my OB-GYN.”
Describe that first primary care visit
I went in about June and had a conversation with her. She said, “It’s probably nothing, but let’s just get it checked out.”
I had a mammogram when I was 30, and I had one when I was 33, so I had a pretty good baseline at that point in time.
She scheduled my mammogram pretty soon thereafter. I went in and got the mammogram. It seemed normal, so everything seemed to go the way it had in the past, except I got a call back about another week or so after the mammogram that something was abnormal and that I needed to come in. That was definitely unique to what had happened in my previous mammograms.
Differences during this mammogram
For the second mammogram, my husband went in with me. From there, they did an ultrasound. They had never done an ultrasound before.
They were spending a lot of time in my armpit area, which I knew enough about my mom’s diagnosis to know that that’s where your lymph nodes are. Something’s obviously unusual.
They wouldn’t tell me anything while I was lying there, so I had to wait until the doctor could come and officially read it. He came in and said, “Well, I know you know something’s not right.”
They needed to do a biopsy. I could choose to either do a needle biopsy or meet up with a surgeon and have a surgical biopsy.
Because of my mom’s history, I did choose to meet with a surgeon and go that route. From there, I did do the biopsy. I think that was in probably late July.
From that biopsy, I woke up to my breast surgeon telling me, “I think you need to get your mom’s records.” That was the first thing I woke up and heard.
That was on a Thursday. I took Friday as a mental day. Then on Monday, I got the official diagnosis that it was cancer.
It moved quickly to a diagnosis
It escalated pretty quickly. It was good that everyone took me very seriously, even though I was 37.
I think that me having my mom’s diagnosis gave me some credibility. Nobody second guessed what I wanted to do. Everyone was very obliging of what I needed to do.
Describe the mammogram
The mammogram was just a normal mammogram, where it squeezes one breast at a time. I’m not very large-chested, so I never had any pain or any issue.
Nobody really reads you the results right then and there. Certain clinics have different procedures, but the one I was at, they definitely waited. Your actual doctor talked to you about it, or sometimes you get the thing in the mail later that everything was okay.
The ultrasound was a wand going back and forth, back and forth. They were looking at the breast with the wand, but they were spending a lot of time in my underarm area. Then another person would come in.
I think the hardest part was nobody would talk to me, so it was really frustrating. I’m a human being sitting here. Can’t you at least just tell me what is going on?
I understand that there’s procedures. Different people read different things, and only certain people can also tell you what’s happening. I was not naïve enough on this case to know that there was probably a problem.
It felt very frustrating to lie there. I remember lying there with the ultrasound wand and just having a tear go down my face because I knew something was happening, but nobody would talk to me.
It actually ended up being almost a lumpectomy because when she got in there, she could definitely tell things weren’t right. She took more than what a tiny needle biopsy would’ve done. It is almost like she performed a lumpectomy and tried to take the surrounding tissue as well.
It wasn’t very painful, and my recovery wasn’t very hard. It was the tip of the iceberg, so emotionally it was very hard and very difficult, but physically it wasn’t that big of a deal.
I’ve had so many surgeries. I think it was just local [anesthesia], and I went home later. It was an in and out. Obviously, the mastectomy is totally, totally different.
I had some bandages and dressing to change. I remember more the emotion than I remember the physical part of it.
What do you remember most of the biopsy?
Just to hear, “Get your mom’s records,” was truly, truly eye-opening. I always felt in my heart that me getting breast cancer was definitely possible, but my mom was 46 when she was diagnosed. I never in my wildest dreams thought I would be in my 30s. I don’t know why. I just thought that seemed crazy.
I thought if it would happen to me, it would happen later in my life. My mom did get her records in order and get everything sent over. I spent the weekend calling everyone that I loved and telling them, “Hey, this is likely going to happen.”
It was very emotional, but it did allow me to process it with a bunch of people a little bit before I even heard the official diagnosis.
How was the wait for test and biopsy results (“scanxiety“)?
Each was probably a couple weeks. It seemed the wait got shorter the more engrossed it was. From the first mammogram to the second mammogram, it was probably a couple weeks.
Each thing just seemed to take some amount of time. It was probably 6 to 7 weeks from that point to get the full diagnosis. I had my biopsy on a Thursday. I got my official diagnosis the following Monday that it was cancer. By the end, things were moving rather rapidly.
I tried to just live my normal life. I had been promoted in February of that year, so I had still a relatively new job. I really just tried to immerse myself in work and my life. Not trying to worry about it so much, but then everything had to change once it became a cancer diagnosis.
Leading up to that point, I felt like I just tried to — I don’t want to say ignore it, but just tried to remain calm and just be myself as much as I could.
Describe the moment you got “the call”
I’m sure my story’s not too unique to anyone else’s. Even with having the doctor tell me on Thursday that, “Hey, get your mom’s records,” there’s still just this glimmer of hope that everything is for some reason going to be okay and not a cancer diagnosis.
I went back to work on Monday. I think I got the call 3:30, 4:00 in the afternoon from the doctor. I walked away from my desk. I remember them saying, “You have cancer.”
It’s just the hardest thing. The whole world stops. Everything that you felt and hoped and wanted to do — just everything just suddenly changes.
I often say it’s just a line that’s drawn. You can never go back to that pre-period. It’s just different from that point forward, so life as I knew it definitely changed. For the next year, everything definitely changed.
It is that raw emotion. It just really comes back and takes you back to that very day that you found out.
My husband actually worked at the same place as I did, so I emailed him and was like, “Hey, we’ve got to go.” I’m sure he knew at that point.
Plus, everything leading up to it. In the car I was able to just be sad and let it all out. I waited to tell everyone at work maybe a week, just to give myself some time to process it.
We actually set up a meeting. I had a good discussion with my boss. At that time I was leading a team of about 10 people, so we invited the whole division basically. My boss framed it up like, “Hey, we are a family, and sometimes families go through tough times.”
It was good to have their support from the very beginning, understand what was happening, and to hear it more from me and not hear it just through the grapevine.
I’m definitely more of an honest person who’s just going to tell you what’s happening. Let’s find the best way to treat it and to move on.
I think it was probably the hardest for my mom. She was living in Michigan, and I was living in Chicago suburbs at the time. For her to be 7.5 hours away, she definitely felt a lot of guilt.
She felt like she caused it or it was because of her genetics or something. She had a really hard time dealing with it at the beginning.
I remember one of my aunts who lives in the same hometown emailed me and said, “Your mom is really not taking this well. She’s blaming herself. She’s just not doing good.”
I called her, “Hey, I heard that you’re not taking this well [and] that you’re blaming yourself.” She’s like, “Yeah.” She got really quiet.
“Well, I can’t worry about you doing this. I don’t blame you.” I told her I didn’t blame God. I just told her, “Hey, we just have to deal with this. We just have to move forward and deal with this.”
I released her of those feelings. She could come to terms with it. [She] just supported me in the best way that she could from that point forward.
She couldn’t obviously make it to everything, but she came and stayed with me for a week during my mastectomy and my first chemo. Definitely, she was the hardest one to break it to, outside of my husband.
Do you remember how your oncologist described to you what 3A estrogen positive means?
I tried to negotiate with him.
Tina: How about 2C? There’s not a lot of difference between 2C and 3A.
Oncologist: No, it’s really 3A.
Tina: Yeah, but 2C just sounds so much better.
I remember having that conversation with him, but the size of the lobular mass that I had [was bigger]. I also had ductal cancer. It is crazy that I had 2 kinds of breast cancer.
I don’t even have the same cancer that my mom had, which is even crazier. That was very interesting to learn. My mom had triple negative; that’s a very tough type to have, and it’s usually very ferocious.
Mine is some blessing. I had multiple conversations, I remember, talking to my breast surgeon.
Tina: Well, is this a better kind to have then?
Breast Surgeon: The fact that there is a treatment that after chemo can help you, then yes. That is the better thing.
We had our conversations about it, and the fact that mine is hormone receptive — there are drugs that can help me post-treatment — was a good thing to have and to understand, even though that drug for many people comes with a lot of side effects.
You had both lobular and ductal carcinoma in situ
Yes. Lobular is like spider-web crazy, and that’s actually what pulled the nipple in. Ductal was more like a lump in the ductal gland. That’s the kind my mom had.
Ductal typically forms a lump, but the lobular is just this mass of a spider web, and it’s just messy random things growing together. Both were on that same right breast.
Treatment Decisions
Did you get a second opinion?
I think they were still staging it at that point in time. With the fact that I had a surgeon, it wasn’t just some needle biopsy, and that she got in there and clearly could see something — I guess I felt that this with my mom’s prior history, too, that we just need to move forward.
I was pretty clear with my surgeon from the beginning, like, ‘Hey, if this is going south, I want a double mastectomy. That’s just what I want.’ She was always very accommodating of what I felt I needed.
How did you find your oncologist, surgeon, and radiation oncologist?
I lucked out. I just felt most all my surgeons fell into place. It seems my OB-GYN had worked very closely with the breast surgeon that I had, and I really her. She worked very closely with a plastic surgeon. He was really great to work with for reconstruction.
She also was familiar with an oncologist, so that’s how I got in touch with him. They were all in the same network or same hospital, because they all shared the same operating rooms and different things.
The only one that I bucked the trend on was my radiation person. After a consultation, my husband was, “No. I’m not allowing it.” I just had this feeling, and then he verbalized what I felt. He was just like, “No, we’re going to get somebody else.”
How did you decide who to go to for treatment?
I’ve talked to other survivors, and it’s amazing. I always say, “Listen to your gut.” You want a smart person, and you want someone very capable. You do want good bedside manner. I’m not saying that’s most important, but you do want some good bedside manner.
[The first surgeon] took 2 personal calls during my consultation, left me with an iPad, and said, “It’s this, but it’s not.” I was like, “Well, what part is that? What part is not?”
I was also like, “If you can take 2 personal calls to an appointment that means the world to me, then I don’t think it means the world to you.” I think you just have to find a doctor that you feel is as invested in this, in your cancer journey, as you are.
If you don’t have that feeling, you should get a second opinion. You should talk to somebody else. There’s always options.
They might not be as convenient, but you should always look into options if you don’t have the feeling that they’re on your team.
Describe the treatment center you went to
It was fairly newer and fairly mid-size probably. It was part of Advocate Hospital, which was a bigger network in Chicago, but it was one of the outlets for it.
What did you like about it?
I would definitely say for me it was convenient. I don’t feel people should just make a choice based off of conveniency, but it was convenient to get to for still trying to work and still trying to have some normalcy to life.
I knew other people who would go downtown Chicago from the suburbs, but you’re talking maybe a 2-hour drive there, 2-hour drive back with traffic, depending on the time of day. It was on my way home from work. I could schedule things easier with my lifestyle.
I actually felt the caliber of doctors was amazing, the people that I had. I don’t know if I just lucked out with the team that I got, but once I had that team, I really felt they were a dream team. They just all gave me such great advice. They even advocated for me.
I ended up taking a medical leave at one point in time because my oncologist asked me tough questions, and I needed it.
Oncologist: Who’s your advocate at work? Tina: My manager. She cares about me. Oncologist: No, no, no, no. I’m not talking about caring. Who is your advocate at work? Tina: I don’t have one. Oncologist: Well, then I really need you to consider taking a medical leave.
He just put it in very black-and-white terms that I needed to hear. He was very resolute, like, “You need to consider this.” He wouldn’t tell me necessarily what to do, but he would always put it in a way that was black and white.
Sometimes when you’re so confused in the whole process, you do need someone that tells you [how] it is. I’ve always felt like that’s how he would treat his friends. That’s how he would treat an aunt.
He would do the same thing to any one of us, so I just appreciated his candor and his honesty all the time.
Did you make the decision to undergo a mastectomy?
I definitely was an advocate for it, in that my one side ended up having lobular and ductal. Lobular was pulling the nipple in and was a hot mess inside there. I think lumpectomy would never even have been an option for that side.
I just didn’t want to have to worry. I wanted things to be symmetrical. In my mind, my mom had a lumpectomy, it came back, and then she got a double mastectomy. That just meant some more peace of mind for me.
But I understand their statistics. Everything’s always changing. Maybe it’s not necessary, but for me I did have peace of mind doing it. No one ever really questioned it, and it wasn’t a difficulty at all.
Did you have a choice to pursue chemotherapy?
My oncologist showed me a piece of paper, and I used to think that I liked statistics, but then he made me realize I’m not sure if I do.
He told me if I did no chemo and no radiation, my chances of dying from cancer in the next five years were 50%. That’s pretty humbling news, so in my mind, that’s not an option.
Surgery (Double Mastectomy)
Describe the prep before the (double) mastectomy
I remember going in early in the morning, talking with the anesthesiologist, and them wheeling you back. It was a really long surgery. Between taking both breasts, checking the lymph nodes, and then putting expanders in, it was about a 10-hour surgery, maybe 11, which is a very long time for anyone to be under.
I even had my in-laws come and stay with my husband because I was worried about him just being there by himself for so long, too. They came and were part of it, which was amazing to have that support. If it’s a double (mastectomy), just plan that things can take a very long time.
Describe the double mastectomy
I understand some people start off with chemo to see if markers are shrinking and different things, but in my case, they wanted to do the surgery first. They did the double mastectomy right after Labor Day. Within a month of my diagnosis, I had the surgery done.
They took 15 lymph nodes on the one side, and then the other side they took off as well. Of the lymph nodes, 2 came back with cancer in a macro way and then 2 micro, but definitely 4 were impacted by cancer.
The good news is there were 11 that were not, and that was pretty much the extent of the cancer, from the scans and everything else. The surgery was very challenging.
It’s just a testament to being in a weird position for so long. There can be other side effects, actually. My toe hurt for a couple of days, which is crazy. I’m not saying that’s going to happen to anybody else. but just the way that they position you and being under for so long, you know it’s a long time.
I remember coming back to the room, and at first I felt really great, but I still was probably under the pain medication, everything that they had given me. Then a wave of just feeling nauseous and horrible. Then a nurse came in and said, “You look so pale; we’ve got to give you something.” I had to take some more medicine.
That first night was pretty rocky, and I spent 2 nights in the hospital. On that third day, I went home. By then I was ready to go home, but that first day and a half, it’s really tough.
I have never been in a hospital since I was an adult, so it’s just difficult to have someone come in your room and check on you every couple of hours.
Those machines, when your legs are moving and making noises, it’s just a whole different world. Some people are maybe more used to it from having surgeries as an adult, but for me it was definitely a learning curve.
You’d go home with drains that had to stay in for 2.5 to 3 weeks. Then you had to go in and see your surgeon. They put expanders in at the same time to get the skin ready for the upcoming implants.
The whole mobility thing was really, really challenging. Mentally I felt fine. I wasn’t really tired afterwards. I could walk [and] do things, but just learning how to eat cereal or just put on a shirt was very, very challenging.
I wanted to wear button-down shirts because it’s just really difficult to get anything over your head and raise your arms.
I remember eating cereal with my left arm because I felt [like] a caveman, but I felt a caveman either way, whether I eat with my right hand or my left. It was just crazy to relearn some things that are so simple.
I did these “Itsy Bitsy Little Spider” exercises all the time to run your fingers and stretch your mobility. I definitely took it seriously and tried to work on all the exercises they had you do.
When you’re in the midst of it, you just feel, “Am I ever going to be normal again?” It’s definitely a very slow and gradual journey. From that point forward, it takes a long time to feel right again.
How long did it take to recover?
The first week at home, my mom was with me, so she did all the cooking [and] all the laundry. It was very helpful to have someone there, because I couldn’t lift. I was very limited in what I could do.
I don’t even think you can even lift a half gallon of milk. You’re probably not even supposed to. You’re very limited in what you can lift and how much weight your arms can raise.
I couldn’t take a shower because of the drains, so that was really difficult. Had I thought things through, I would’ve maybe cut my hair shorter, knowing I was going to go into chemo and do that next. Just because the showering part or having to take a bath is so much more complicated, and obviously brushing your hair is really difficult.
It’s pretty humbling to be 37 years old and having your mom give you a bath and comb your hair and do all those things. You’re an independent woman, so it’s really difficult and humbling. But I made it through, and all I wanted to do was shower. It was my end goal.
I do remember when the bandages came off, and at that point in time, my mom had stayed with me for a week. My best friend had come and stayed with me for 4 or 5 days, so I was finally alone. The weight of it all was just enormous.
Seeing myself with just this body I didn’t recognize, the emotional toll of it — that was really hard. Probably more than even the physical part of it.
Describe the drains
They fill with fluid, but you had to measure the contents [to see] how much was draining. I had a little checklist, and we had to get it down. When they finally got to a certain amount low enough, then the drains were able to be removed.
Basically, it was tubing inside of you that connected to this little bulb. For me to leave the house and go do anything, I had to pin the [tubing] together. I didn’t want them showing, so I had to hide them in some way.
What were the expanders put in during the mastectomy?
They put in these expanders, and then they would fill them every week or every 2 weeks. I’d go in and see my doctor, he put a little more cc’s [of fluid] in [the expanders] each time to gradually stretch the skin so that next April I had the exchange surgery. Then those expanders came out and actual implants went in.
Chemotherapy
Describe the surgery to put in the port (used to deliver the chemo)
I didn’t have any issues with it. You could shower. I think you could go swimming, even though swimming was obviously not advisable. You could do whatever and live your normal life.
To me, it was more so I just felt like an alien. If you just have this weird thing sticking in your upper chest, your clavicle area, it just looked weird. I just felt like I looked like a mutant or not a human.
But it really was convenient because, obviously, they don’t have to find veins every time, and you don’t have all that. I was fortunate I never had any infections or any issues with it. It actually was quite a convenience once I look back and look at it now.
What was your chemotherapy regimen?
Chemotherapy regimen:
Adriamycin & Cytoxan (AC)
4 times every 2 weeks
Taxol
1 time a week for 12 weeks
I did 4 rounds of Cytoxan and Adriamycin, or the Red Devil, which is the really tough kind. They have to test your heart just to make sure it’s strong enough before they give you that stuff.
That was 4 times every 2 weeks, starting in mid-October 2013. Then I finished up Thanksgiving weekend. After Christmas, I started the Taxol or Taxotere, and I did 12 rounds of that. That was every week.
How long did the chemo infusions take?
They would do blood work to make sure your levels were fine, so my white blood cell count. The potassium is often an issue. They’d run a series of blood tests to make sure you’re okay, and then once that came through clear and your doctor could see it, then they would clear the chemo drugs for me.
Usually from the time I got there till the time I left, it was probably 4, 5 hours. Other people would get different infusions. I was just getting the Adriamycin at the time, Cytoxan, or the Taxotere, so I was just getting that.
They usually push through Benadryl at the very beginning, so you’d get this wave of feeling sleepy before I would even start, and then the chemo would drip usually for a couple of hours. Then you were good to go.
At the time, I’d have to come back the next day and get a Neupogen shot, which helps curb infection chances, but now I think they’re doing that even on the arms. People go home with it now, whereas at the time when I was doing it, I had to come back in the next day.
Describe the side effects of the chemo
AC:
“Hangover” feeling
Heightened smells
Nausea
Loss of appetite
Taxol:
Brittle, dry nails
Constipation
Occasional diarrhea
I had really bad nausea. First time I did the Adriamycin-Cytoxan, I went in, probably administered about 10 or 11 in the morning. By the time I got home, it was early afternoon, and by 4 that afternoon I just felt horrible. It felt like a hangover, and you had no idea when or if you were going to throw up, but you just felt you were going to throw up. I felt that way probably for 3 days.
My smells were really heightened to me. My cousin was there, and she was making pancakes. I didn’t even know pancakes had a smell, but it was the most horrible smell ever. I was like, “Oh my gosh, I have to leave this level of the house; I can’t even handle it.” I was taking the anti-nausea meds that they gave me, but it was almost like I was behind, and I could never get ahead.
I would not have any hunger. I am always hungry, but I had no hunger. For me to eat maybe a teaspoon of Cream of Wheat and maybe a cracker in a day was enough. I had to force myself to even do that.
Usually by about the third day, I’d start to get hungry for something again, and then I knew it was out of my system. I tried to walk and keep active because movement is definitely good. You want to keep your body moving.
You want to drink as much water as possible, but even water I ended up hating. I ended up switching to sparkling water — it tasted so much better — and ginger ale. I tried to do different things. Even today, I still hate Ice Mountain water. It reminds me of my chemo at the hospital because that’s the water that they gave you there.
Then with the Taxol, I didn’t have as many of the food issues. I felt I could pretty much eat normally. The cumulative of the effect of the chemo was definitely brittle nails, and I tried to put Sally Hansen “Hard as Nails” every other day. I put tea tree oil on my nails. I didn’t end up losing any nails, but you could just tell they were really brittle and really dry.
I definitely had issues with constipation. It was sometimes you’d go from diarrhea to constipation even in one week. It was just a crazy roller coaster of things.
I think emotionally I just felt a little less stable with the Taxol. I just felt more anxiety.
Again, it could have just been the cumulative effect of chemo and just the whole weight of everything. I definitely felt just more vulnerable than I ever had emotionally.
What helped with the chemo side effects?
AC:
Emend for nausea
Taxol:
Constipation: MiraLAX, prunes
When I talked with other survivors that had been through chemo, they describe this Emend, which is a stronger anti-nausea. Then I talked to my oncologist about it, and he prescribed that for me rounds 2, 3, 4, and that made a huge, huge difference for me. I still didn’t feel good. I was still tired, just unbelievably tired.
The diarrhea wasn’t as common. I do remember constipation to be more so an issue, and I remember MiraLAX. I remember buying prunes. I remember my doctor telling me, “Try this; try that.” At one point, literally praying to my grandma, who had passed away, and just being like, “Will you please help me?”
That was pretty hard. I just went to a point where I don’t know what to do. My body just doesn’t seem to be working. That’s pretty tough. After I prayed to my grandma, everything seemed to get kicked into gear, so I think she’s taken inventory up there. It was really tough to handle all that part of it [and] just try to be somewhat normal.
You feel like you can go anywhere, or is that going to be the moment where nature’s going to strike and you need to go? That was difficult.
Why did you decide to pursue reconstruction surgery?
I was 37 years old. I’d only been married a few months at the time of my diagnosis, so for me to feel as close to what my “normal” was, I did want some kind reconstruction.
It’s very personal. I did the implants, and I guess I always felt if it wasn’t meant to be or if it didn’t take or there was infection, I would have gladly walked away and just been fine with it, too.
But it was worth a shot to try to make me feel, in my mind, what was as ‘womanly’ as possible — to what I was before my cancer diagnosis.
I definitely have scars, and I did use nipple tattooing by my plastic surgeon about 6 months after the actual surgery. Seeing those tattoos and seeing a vision of something that looks in my mind somewhat normal, that’s actually when I got a lot of tears because I felt at that point in time I had come full circle.
Today with a bra on, I don’t feel I look any different than it’s been before. I’m very pleased with the results and how everything went.
But I do know a lot of people had a lot tougher times than me, or even infections and different things. Sometimes it’s not possible, with the skin, with radiation, and what the impact is.
Describe the process of the reconstruction surgery
That part was quite easy. You did all the fills (expanders), which stretched the skin, and then you got to the exchange surgery, which for me was April 2014.
I’d just gotten out of chemo about 6 weeks prior to that. I think the hardest part was as soon as you felt you accomplished something or were done with something, then it was a whole new ball game of something new challenging on your plate.
That surgery itself wasn’t actually too bad. I didn’t feel my recovery was too difficult or anything. I threw out the first pitch for the [Chicago] Cub’s baseball game about 3 weeks after that surgery, which is crazy. That was my fun fact, but obviously I felt fine enough to do that not that long after, with my doctor’s approval of course.
What was the tissue expander process?
They’re filling it with cc’s of fluid, and it’s just slightly expanding your breast area. When I came home from the surgery, I actually had little lumps — it was these tiny expanders — so I wasn’t completely flat-chested.
There was just this little bump in there, and then gradually over time they’re filling it up with these cc’s, but it was very, very hard. I’m a belly-sleeper, so you can’t even began to lay on that side of you. They’re bricks. When you get your implants in, then they take the expander out, but it’s created space and tissue and allowed that construction then to come in.
Then it feels more a normal breast. I can now lay on my stomach again. I can have the movements to me. The expanders are truly to slowly stretch the skin over time.
How did you choose between implants or flap surgery?
They did talk to me about that, but the recovery time was so long [for flap surgery], and they felt they could do implants. I just didn’t want another surgery. I felt that was the most advantageous to get me back my normal life.
Radiation Therapy
Describe the radiation therapy cycle
It was 5 weeks, 5 times in a week, so Monday through Friday. I would go around my lunch hour every workday. They had a setup time frame. They tattooed you, they traced it all where they need it to go, [and they] made a mold specifically for your body. That happened prior to the 25 rounds of [the radiation].
From the time you were in there, it was very brief. Most times it maybe took 5 to 10 minutes. It wasn’t a very long procedure. It took just as long to basically get changed into your gown and get all positioned than the actual process itself, so it was fairly quick.
Were there radiation side effects?
Sunburn feeling
Pain
I know a lot of people would get tired or have side effects, and maybe because I was coming off chemo and still improving for me, it wasn’t super tiring. I was feeling actually probably better than I had been just because the chemo had really worn me down.
I remember I bought aloe plants, and in addition to the medication that they prescribed, I put aloe plants on my skin each night. I drank aloe juice, and I tried to just heal my body as much from the inside with aloe juice.
I didn’t have my skin break open or have major issues, but it is crazy. Even though you’re done after 25 rounds, there’s still a reaction happening to your skin. About 3 days after my radiation, it was just really, really painful.
It felt like a million little pencil pricks or something. It just was really painful. I would either take an Advil, or if I was at home, I’d actually have a shot of whisky. Then it was done, and it was fine, but it did look like you have a sunburn on you where the radiation was being targeted.
Then it was pain pretty much after. The last few days were maybe more intense, so that’s what’s weird. Even though you’re think you’re done, you’re not really done.
How did your oncologist introduce the hormone therapy?
Because my breast cancer was estrogen positive, I was going to do some hormone blocking thing. Some people don’t react to well to tamoxifen, so there’s different kinds, different estrogen-blocking methods. He wanted to come and try me on the tamoxifen first.
Then my oncologist had just gone on some summit or medical conference. He had come back and said, “Well, they just did this study on people under the age 35, and they’ve shown a 7% greater chance of survival rate when they’ve done the Zoladex trial.” At the point, I was 38. He said, “I know you’re over 35, but I think it’s worth it for you to try this. I think this will be in your best interest.”
The Zoladex shot, I think, was actually started for a different cancer, and then they just realized that it does have some benefits for estrogen-positive recipients.
I started doing that shot. At first we did it once a month, and then we found that there was a time release one that we could do every 3 months. I’ve been on that the last few years. That essentially put my ovaries to sleep. Between the 2, there’s not a lot of hormones in my body anymore. Basically, it just tries to shut down all the hormone activity.
At first they talked maybe it will be 5 years. Now it’s sounding like 10 years, and I’m even hearing rumors people may be on this for life. Side effects willing — so far, I’m pretty good with all the side effects.
I still have hot flashes. I definitely have some moody PMS issues when I first was on tamoxifen, but I don’t know if it’s because I’m in full-blown menopause now. But I feel fine. I feel just like my normal self.
How often do you take tamoxifen and Zoladex?
The tamoxifen is a pill that I take daily. The Zoladex is every 3 months. Usually my doctor visits just coincide with that, and they check me out. I don’t have to get mammograms anymore because I literally have no breast tissue to examine, so they usually do a really detailed self-examination and then do the Zoladex shot at that same appointment.
Does the hormone therapy have side effects?
I feel like it’s harder to lose weight, but I have now taken a more serious role with it.
I do think with estrogen blocking and all the different things, my body is like that of a 60-year-old. Muscle mass and all that becomes more important, and it’s harder to lose weight just normally.
I have proven that it can be done, but it takes a lot more effort and work. I think that’s normal with aging, too, but definitely with tamoxifen, I think that’s an added impact.
[6 days after the scan is] when I got the results, so not too bad. I had it done on a Saturday and got the results on a Tuesday. Waiting over the weekend is always tough.
Dr. Singh called me back, and it’s just funny how you can tell so much from the first greeting. He told me my scan was clean and all was good! Today is a good day. God is Good!!!
I was elated and over the moon! All that heavy lifting of chemo upon chemo and radiation after radiation had done its job.
It’s just so personal. You have this image of who you are, and when you have to change that, it’s very difficult.
I would just keep walking by this wedding picture of myself that was 4 or 5 months prior, and it was really hard to see this long, blonde hair in this picture and this mental image of myself, then to look in the mirror and not see that.
I got it cut shorter in preparation for chemo. I think it was late September, early October. Then with my first chemo, I think it was by the second chemo, 2 weeks after, I was definitely losing my hair.
I went in actually the night before Halloween on my way home from work. I ended up stopping at a Sports Clip and just said, “Cut all that hair off.” I think they ended up charging me a senior rate. I think they felt really bad for me.
But it just felt so much more normal for me to do it at a hair salon of any kind, just to see it on their floor and on their sinks.
That felt like where it should be. If I had seen it in my own sink, I think I would’ve been really disturbed or just too upset about it.
I had a shaved head. I’d gone for a wig consultation and had 2 different wigs, but I really loved my shaved head. It still had hair, and it still had some substance to it.
I wore that shaved head for probably a month to 6 weeks. Then it started to get just really patchy, and it just wasn’t uniform anymore.
I switched to wearing my wigs. Plus it was winter, so it was okay to wear something scratchy and hot sometimes.
Even during Taxol, my hair actually started to grow back near the end. I started to get peach fuzz. Then definitely by late March to early April time frame, it was starting to grow back very, very short. Very pixie. It just started growing and kept growing.
I found that it just wasn’t the same as before. I used to color my hair and make it more blonde, and it wouldn’t take the color. It just had a mind of its own for probably a year or so. It did what it wanted to do.
What did you wear when you were bald?
At home I wore beanies and hats. When I went out in public, though, when I went to work, I would typically wear a wig. I was on medical leave from mid-to-late January until early April. I was at home actually quite a bit, so it didn’t really matter what I wore. I did wear more beanies just because it was more comfortable.
Any advice to others on managing the hair loss?
I would say to cut it shorter in advance. Maybe that doesn’t mean shaving it, but I will say that, again, seeing it at a hair salon cut short just feels still somehow more normal than seeing it at home.
I would say have a little bit of fun with it. I did a hairstyle I wouldn’t have normally done, but I had fun with it. I know other people who did mohawks. I know people who just did funky things or colored it hot pink or unicorn.
But I would just say have a little bit of fun. The one thing that you can control is how it’s going to go, so maybe have some fun with it before it goes.
Did you know about cold caps (to try and save hair)?
There are people that do the cold cap. That wasn’t an option for me, but I would definitely look into it and see what that option is. I hear a lot more survivors talking about that option now. Every year it’s different.
There’s more advances. If hair loss is something that really bothers you or you want to talk to your doctor, I would definitely talk to them about that.
How did you balance work and life during treatment?
I felt in order for me to be me, I still wanted to work, and that worked for a little while. Having the support and love of all my coworkers was definitely amazing.
Then I just got to a point [where] I just felt like I just couldn’t [work]. I was just really sad, and I just didn’t know what to do. I felt foggy and really not sure.
I remember going to a support group, hoping that others would talk about work-life balance. But so many of them were in their 60s. They were already retired. I got a lot of love and support, but I didn’t get that “how do you balance it all” thing.
How was the financial aspect of treatment?
They talk about being your own advocate health-wise. If you get a bill, it doesn’t necessarily mean you owe everything on that bill. Sometimes you have to just follow up and make the calls. Sometimes you don’t have energy either, so you need help to get through it.
Sometimes hospitals offer different people to help you navigate through that. One of the things I remember thinking was, “Oh my gosh, if this were my grandma right now, she would have probably paid $10,000 more than she ever needed to because this isn’t really a bill.”
This is just telling you an explanation of something. Sometimes I really had to call and get to the bottom of what I really do owe, even fighting things because sometimes the insurance wouldn’t pick it up until you connected all the dots for everybody.
I had to be my own insurance advocate a lot of times, but I was actually very grateful for what I had to spend [out of pocket]. I was very lucky. Very blessed.
Support & Care
How did you manage the mental and emotional stress during treatment?
I think it was that January leading up to my medical leave, I was sick. I wasn’t feeling good. I felt like I had a cold. I was trying to work from home a couple days a week, yet I was getting called. “Why aren’t you on this call? Why aren’t you on that call?” It was just very overwhelming.
I would say normally I could have handled all that stress; that’s just who I was as a person. When you’re going through all the chemo and the cumulative effect of it, you might not be able to handle stress like you normally can.
It’s okay if it’s not okay. If you need to talk to your doctor, which I did, you should do that. I do [appreciate] his sage advice telling me, “You really need to consider taking a medical leave.” For me, it was the best decision I’ve ever made.
It was close to 3 months at home, and I could protect myself from germs. My doctor just told me to do something every day that makes you happy. I thought that those were really powerful words.
Sometimes I would just make pizza from scratch with yeast and the bread dough. One day I made a pie, or one day I did an art project. I did yoga every single day on a videotape at home called Gentle Yoga.
It was self-care. I just took care of myself. I really did have to prioritize myself and my mental being. I felt like I’m doing everything the doctors need me to do. I need to take care of myself.
It wasn’t being selfish. It was doing what I needed to do for my body and just listening to it and slowing down. I’ve worked a pretty stressful, crazy job, and it just put a lot into priority for me.
It’s hard to slow down for many. Any tips?
I did this Gentle Yoga tape, and I used to think yoga was stupid. I really did. I was just like I don’t get it. I’m an endorphin junkie. I want to run. I just want my immediate fix. Just give me that. Honestly, I went into it with a whole different mindset during my treatments.
They talk so much on this yoga tape about surrendering and having this balance. It’s not only the push; it’s also the pull and the surrender, and just how important that is. Just being a net and letting it flow through.
All these things really resonated with me during my treatment, and something as simple as the breath and just focusing on it. It’s almost magical.
It was really transformative for me to just take that time and to truly focus on each breath and on just slowing down. It was good. Sometimes you have to.
I’m not trying to say that my job or anything led me to getting my cancer, but I feel one of the silver linings was just coming out of it with a greater sense of boundaries and a greater sense of balance.
Were there big surprises during treatment?
I think probably because I had seen my mom go through it, I guess not so much. My mom gets sick. [If] she goes on a cruise ship, she gets sick. She goes on a car trip; she gets sick. I’m just not that. She goes on any boat; she gets sick.
I was like, “I just don’t have that motion sickness thing that you have.” I thought I would be fine, genetics aside. Then she literally would get sick at 4 o’clock after her treatments, and I would get sick at 4 o’clock after treatments.
I don’t know what was genetic or what was what, but despite me going into it thinking I wouldn’t be my mom, I was exactly my mom in terms of throwing up at 4 o’clock. It was just crazy. That was probably the biggest thing.
I had witnessed so much with my mom going through it. She went through chemo 2 times, once when she was 46 and then once when she was 49. She did the red devil the first time, and then the second time she did the Taxol. I at least had some familiarity with it.
Finding your community
I ended up turning to Instagram because I met so many amazing people who are also younger and trying to balance and do that. That was a great support network. But truly I just made a decision.
I remember waking up after my doctor told me about, “Who’s your advocate?” I just woke up one day, and I was like, “I can’t do this. I’m doing everything I possibly can: chemo, radiation, surgeries, all this stuff, but am I really taking care of myself?”
I couldn’t answer honestly that I was if I continued to work.
Thankfully, I was in a position where I could take a medical leave and still get paid. I understand not everybody’s in that financial position.
For me, it was the best thing for me to do at the time for my body to just take a break. It was actually a really amazing time, just a peaceful time.
Yes. I think at the beginning, my oncologist really wanted me to get chemo at his facility. I remember going in there, and it was just really sad. I had a friend who was getting an infusion for a different treatment at a cancer center at the hospital.
I just wanted to go there. I just felt that everyone had their private area, so I felt my husband could come with me.
For me, it just seemed much more of a natural place to get chemo than in this office with people lined up in chairs. It really was heartbreaking.
I remember working with the nurse navigator, and she helped advocate for me, too, but we eventually got my doctor to understand that I just didn’t want to get it done here.
If you feel very passionate about something, you definitely have to find people on the same team as you. You can definitely push, push back, and try to seek alternative options that meet your needs better.
How important was it to have caregivers around?
My mom was such a support for me, obviously. I just remembered that my first oncology appointment was horrible. The waiting room was horrible.
I remember getting into my car and calling her, just crying and crying and crying. You need that person that can just allow you to be and let you cry and let you get your feelings out.
Obviously, my husband was an amazing support. He helped me to be more normal and to feel more me. We would go for walks together, and it felt like each walk, each step, was closer to the finish line.
That was really great. He was really supportive of all the work ups and downs and everything that happened with the work aspect.
Then it’s the sisterhood. Breast cancer’s just really an amazing sisterhood. Everybody wants to help everybody else. I met some amazing women that I’m still friends with, and I continue to meet more people.
That’s what inspired me to start my podcast, DJ Breast Cancer, just to help people through and be that girlfriend’s guide. Just to tell them how I felt and to feel like they’re not alone.
If you have a best friend going through breast cancer, you could listen to this podcast and then also feel, too, “I can maybe be a better friend, because this can maybe start a conversation or could maybe help me be a better friend.”
Any advice on how to ask for support?
I think support comes in a lot of different ways, and for a lot of people, it’s different. It can be as formal as a support group. It can be talking to your doctor.
Cancer is not a do-it-yourself sport. You need a team. You really, really do, and you have to find people that are going to help you on the journey.
It’s okay if you take a day, and you just need some time to yourself. At the same time, you have to rely on other people. You need people to take you to appointments.
You don’t ever want to go to your first consultation appointment on your own. Don’t do that. Then for rides for chemo, you often can’t drive yourself back home. You don’t know how you’re going to react to the medication.
You’re going to need a team of people. Sometimes they can be your best friends, and sometimes it can be people that you meet at your support group. I had an amazing person, Sandy Clausen, who came into my life, and she took me to so many of my appointments. She was just my angel. She just helped me through so many hard times.
Unfortunately, she got metastatic and I lost her, so it was really hard. She’s actually [whom] I dedicated my podcast to. She’s just the example of support and women helping women.
You don’t have to know people. You can just feel, you just help them through, and that’s just what you do. She’s just an amazing example of that.
Survivorship
What does “life after cancer” mean to you?
Just really embracing life. It looks a whole lot different than before cancer. I just really enjoy living my life. It’s really important to me now to live my life fully and with a purpose. It’s not enough to just show up.
No, I have to be present, I have to be engaged, and I have to believe in what I’m doing. Try to help people and make them more aware about breast cancer and that it’s not an easy cancer.
It’s been dubbed, “You have the good cancer.” Well, no, I don’t. There’s no good cancer, and I won’t rest until something’s been done about it.
It’s just finding beauty in the simple things. Taking a walk. It is making a meal from scratch. It’s telling people that you love them. It’s just a lot more simple on this side than it was before. That’s, to me, one of the beautiful gifts of the whole journey.
How has it been managing menopause at such a young age?
I remember thinking, “I want to have my period. I don’t want cancer to take that away from me.” I got one period, and I was like, “Oh no, you can have it back!’
Then it was funny because I went on the Tazocin and the Zoladex, and it went to my wishes. Actually, I don’t miss that part at all. I would just say it’s the hot flashes. There are some mornings, between the hairdryer, the hot coffee, whatever outfit I picked out for the day, I’m like, “Save me right now or send me an iceberg, one of the two.”
But I don’t really miss having my period. It does change your dynamics; my husband and I thought that maybe we could have a family.
He has a daughter from a prior marriage. It definitely changes when you know you can’t. It’s just this finality thing. Okay, well, this is my life now, so you just have to make the best of it.
I have 2 goddaughters, whom I love to death. One is 13, and one’s going to be 3. I’m just determined that one day they’ll live in a world where they don’t have to worry about breast cancer.
I try to fight for that day and be active in causes that research breast cancer and are trying to make a difference.
Now for a fun story: both happened at Chicago Cubs baseball games!
I was on a train, actually going back to Michigan at the end of my chemo, and the hospital called me and said, “Hey, we picked your name out of a hat, and you’re going to go to some Pink Out game at the Cubs.”
I was like, “Oh, cool.” All I cared about was can my husband come with me, because I just didn’t want to go by myself. They’re like, “Yeah, we’ll get back to you on the details.”
Then a month later, they called me. I was just back at work just after my exchange surgery, and they’re like, ‘Hey, would you like to throw out the first pitch?’ I was like, ‘Yeah, that’s not even a question!’
I’m from this crazy sports family, so yes, the answer was yes. It was amazing. Obviously, you get nervous at a lot of different things, but it was the craziest feeling.
I went to the mound, and I never felt nervous. I just felt like I’m a winner.
This is just an amazing end to such a journey, so it was really awesome. It wasn’t a strike, but the catcher caught the ball. 50 Cent had gone not far before I did and made a total idiot out of him, so I’m like, “Whatever I do, I’m going to be better than 50 Cent.”
And I was. I’ve got that going for me, and Wrigley [Field] is just so historic and so amazing.
Then the next year, they asked me to come back for the Pink game and do the seventh-inning stretch with 2 of my survivor friends, one of whom was my friend Sandy, and then my other friend Ronnie. That was a great experience.
Looking back at it now, I’m even more fond of it because despite all the hardships we went through, we had that one day that wasn’t about cancer. It was just about fun and the Cubs and just being there. It was amazing.
Any more advice for people dealing with a new diagnosis?
It’s definitely a roller coaster. There’s going to be ups, and there’s going to be downs. I think it’s just hold on tight, and you may never get back to a complete normalcy, but things will get better. I think that’s all I can stress.
In some ways, you’ll appreciate the journey. Looking at it on the other side is just totally different. It’s amazing, and you just appreciate more, but it’s not easy.
It’s okay to have a bad day, and it’s okay to be down. If you find yourself staying there, then you’ve got to talk to somebody. Is it your doctor, is it your nurse, or is it a counselor? You have to talk to somebody if you find yourself just staying in a down place. You need to.
Natalie’s Stage 0 ER+ DCIS & Paget’s Disease Breast Cancer Story
Natalie shares her stage 0 breast cancer story, getting diagnosed after finding a lump on her right breast. She details undergoing multiple surgeries, including a lumpectomy, then double mastectomy, and reconstruction, as well as hormone therapy.
In her story, Natalie also highlights how she got through the emotional roller coaster of cancer, being a young mother undergoing treatment, and the importance of patient self-advocacy.
I wouldn’t be doing the things I’m doing now had I not had cancer. It’s sad that this had to happen, but sometimes these are the kind of things that have to happen before people realize that they need to change things up a little bit.
If you have a cancer or struggle that you feel like you can’t make it out of, you need to be able to say, ‘If tomorrow I’m taken away, at least I can say that the life I lived was happy, and I did things right.’
The life you’re living right now, make the most of it.
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 first symptom was a lump, actually. It was not painful, but it was quite hard. I’m from a Jamaican background, and in Jamaica we have a fruit called guinep. On the outside, it’s kind of soft and squishy, but on the inside it’s hard. It was about like that, and I’d say 2 cm round on the side of my right breast.
I felt it when I was in the shower lathering up. I wasn’t one of those women that did the regular monthly check. It’s not something I learned growing up. It was just something that I came across while I was lathering up. That’s how I knew that something was there and wasn’t right.
My breast had never felt like that. My breasts had just gone back down to normal size after nursing my third child, and that was what allowed me to feel it.
Had I still been nursing and my breasts been engorged, I wouldn’t have felt it.
What do you remember of your first visit to the doctor?
The first visit was to see my family doctor. I’m not the type of person that gets too worked up about things if I don’t have a definitive answer, so I wasn’t feeling scared or worried.
I just wanted some answers and went in with an open mind. She’s a young woman herself, so she said, “Okay, let’s just get you in for a mammogram and ultrasound.”
Even through the mammogram and ultrasound, I was still quite level-headed. It wasn’t until the mammogram came back saying it was nothing that I had a concern because the feeling was still there, and I just knew. A woman just knows her body. I knew that this was not nothing.
That’s when I asked the doctor to send me to a specialist who deals with cancer patients and reconstructive surgeries and all that. That doctor said to wait 6 months. She wanted to wait and see if it changed.
How did your doctor give you the diagnosis?
Then 6 months later, I did have a lumpectomy. This is when I started to get worried. Between the lumpectomy and the 2 weeks I had to wait to get the results, that’s when I was concerned.
It was like they had something that could really give me a definitive answer, and I had all this time prior to that to stew in it, so I was nervous waiting to hear the answer.
My doctor and I are quite friendly. She’s a nice lady. We talk about fashion and all that. We always preface our conversations with that before we go any further. I don’t know if that was her way of lightening the mood this day or what, because she didn’t have good news for me.
She said, “I don’t know how I’m going to tell you this because I didn’t expect the answer myself, but you have breast cancer.” She said she felt the lump after surgery and didn’t think it was.
She said it didn’t look like it was cancer, but it was. She did tell me that if there was any kind of breast cancer to have, this was the one.
How did you react to the diagnosis?
I don’t know if anyone wants to hear that they have cancer, but it was coming from a doctor who knew what she was saying, or she wouldn’t have said it.
At that point, I was by myself. Then 2 weeks in after surgery, I was feeling pretty normal. My husband was working, so I said I could go by myself.
Shock. Disbelief. Sadness. Scared. Worried. All those feelings that a young mom has. I have 3 children. My youngest was just under a year.
I worried for them because this was new to me. Oftentimes when you hear cancer, you associate it with death, so of course the tears started falling from my eyes and the worry set in.
I definitely called my husband first as soon as I got in the car. I was overwhelmed and full of tears. He had me take a breath and calm down. His first question was, “What are they going to do now?”
My doctor had decided that she wanted to discuss it with the chief head surgeon of the hospital. When I left the appointment, she hadn’t given me a next course of action, so I didn’t know what to tell my husband. I was still waiting for answers myself.
He’s more of a worrier than I am. He’s a typical man, though, and keeps things within, but I know that was killing him.
I came home, and we said we were going to wait and just went back to business. Honestly, we went back to taking care of the kids [and] working. All the kids were in sports, dance, piano, so you just keep going.
The second opinion came from the chief of the hospital. My doctor called and said, “I’m going to send you to him, and he’ll talk to you about what the next steps will be.” That appointment was within a week.
When the doctor took the lump out and sent it for pathology at that hospital, the technicians damaged my sample. Instead of calling the doctor to tell her that the sample was damaged, they automatically sent it to another hospital — a cancer research hospital in Toronto. That hospital was the one who came back with the results.
It was upsetting for me that they took it upon themselves to send it away after damaging it without letting us know what happened, but at the end of the day, the results came back, and that’s what we needed to take the next step.
The chief now had both sample readings — the damaged one and the one that came back from the cancer hospital. They both said the same thing. It was stage 0 DCIS, still within its sack.
What were the next steps after getting the diagnosis confirmed?
He suggested I have an MRI, and it came back that there were some suspicious spots in the marginal area near the lump. He suggested we either go in and take out more tissue — which would leave a big gouge in my breast — or have a subcutaneous mastectomy.
Subcutaneous, meaning they would leave the nipple and take out 95% of the breast tissue. He said, “Go home, talk to your husband about it, and let me know.”
I understand that a lot of things should be discussed between both parties, but that just kind of stopped me in my tracks. At the end of the day, this is my body, and this my decision.
I knew that I wanted to do what was supposed to stop the cancer from coming back again, which was to do the mastectomy.
On top of that, I knew that I had the opportunity to leave my nipples and do reconstruction, so we booked it. I told the doctor, “While we’re there, I would like to do both breasts.”
I didn’t want to have to worry later on in life about cancer resurfacing in my other breast. He suggested that I do some more research on because they usually just work on the problem breast, but I knew I wanted to do both. That was what happened. I got the double subcutaneous mastectomy.
Describe the double mastectomy complications
To make a long story short, I ended up having 10 surgeries with this doctor to get these breasts built back up after the subcutaneous mastectomy, including adding in the tissue expanders, the emergencies, and all that.
I formed a lot of scar tissue. That was causing a lot of problems because the implants were being squished. My breasts weren’t round. They were sort of oblong. The scar tissue was so hard and painful.
This doctor did so much research. She traveled to Europe, even, because they have a history of a lot of successful cosmetic surgeries, and she said she was going to go find out if there was a way to get rid of the scar tissue. She finally came back and said she couldn’t help me.
She found a great doctor for me at a teaching hospital in Toronto who uses a human cadaver tissue. They can use it in different parts of the body, but for me, she used it in my breast to give me some more muscle and form a hammock to hold the implant and stop the scar tissue from building. I think that took 3 or 4 surgeries with her in order to rebuild the breast.
She put in the human cadaver tissue to add to my muscle, let me heal, and had to go back in. She did fat grafting, so she took fat from my inner thighs and put it in my breasts. I had 3 sessions of that. Then she put back in the implants. That was surgery number 13.
More Diagnoses
Cancer found in nipples (Paget’s disease)
Around the time of that surgery, 8 years after diagnosis, I noticed my nipple started to look odd. My nipple was looking odd, cracked, and bleeding. It looked like how it looked when I first started nursing.
When you nurse and your baby suckles, the nipples get pretty irritated and red, and it looked like that. When I was going in for surgery 13, I told my doctor, “Look, something doesn’t look right. Maybe my nipple is finally dying after almost losing it.”
She said she would have a look at it. She took a sample of it when she was finishing up the surgery and sent it off. That came back as cancer of the nipple.
When she came back in to tell me that that was what that was, it was utter shock. First of all, I didn’t know there was such a thing as nipple cancer. Then, after going through 8 years of surgeries, you’re ready to call it a day. I was so glad to be at the end of it.
To hear that I had cancer once again, I was angry. I was thinking back to my previous doctors and how nobody informed me that there was such a thing as nipple cancer.
What did your doctor do about the nipple cancer?
What we ended up having to do was book another surgery to remove the nipple. It’s not a matter of just taking the circle. It’s taking away a good chunk of your breast tissue in order to get rid of the nipple, the areola, and the tissue around it. That was surgery number 14.
From that surgery, because she had to take so much tissue, my breasts started to basically burst open because I’d had so many surgeries. My skin and muscles were worn out.
My breasts were forming pressure ulcers. With that, I had to have surgery number 15. It was to fix the problems from the previous surgery.
She took out some extra tissue to just be sure she got all the nipple cancer, and that was great.
Then there was a third diagnosis. How did you react to that?
I went in for my results after the nipple removal, and she said, “We found more cancer.” She took out the nipple and had went in to take more tissue, and it showed that there was further DCIS in my skin.
I didn’t have tissue anymore. The bulk of what I have is muscle and implants. Of course, if you have skin, then you have connecting milk ducts, even if you just have 1% of tissue. That’s where the DCIS resurfaced.
This time, it was the weirdest feeling. It was like I had heard it so many times, I wasn’t surprised. I didn’t react right away.
I wasn’t heartbroken and sobbing. My husband had that reaction. I turned and looked at him, and he was sobbing. He looked like he was hyperventilating.
My role changed at that point. I had to console him. I was playing the role that he was to play. I asked the doctor what was next. She said, “I think we need to get rid of that whole reconstructed breast and start from scratch.”
All the surgeries I went through to get this breast back culminated in needing to remove the whole breast all over again. Surgery number 16 in the summer of 2016 was where I ended up losing the full breast again.
I was okay with that. It was like I was finally getting rid of the problem. It was like cutting off that infected limb that keeps causing other infections. We got rid of it.
Remission & Reconstruction
Deciding whether to reconstruct
After the last surgery, I just wanted to heal. I didn’t want to talk about surgeries for a while. I didn’t know if I was going to bother with reconstruction again at that point.
I just wanted to take some time and think about why I would want to rebuild them and whether or not I’d be doing it for the right reasons.
I decided that I wanted to know if I was going to rebuild because I was worried about how I looked physically or because I couldn’t live without a breast emotionally. I needed to know what my real reasons were.
I went to prosthetics. They’re great for women that don’t have breasts. They look and feel natural. Nobody could ever tell that I didn’t have a breast on one side. Because the left side was also reconstructed and part of the fat graft was shrinking, I was wearing a partial prosthetic on that side as well. I was wearing 1.5 prosthetics, and I was okay.
About a year and a half later, I decided that I wanted to try one more time. I decided I wasn’t going to let cancer win. The only option left for me was to use the LD muscle from my back. What they do is they take a good chunk of the muscle, tissue, fat, and skin, and they cut a diamond shape, bring it around your arm, and they place it where your breast will go.
From there, I had more fat grafting sessions. They had to start taking fat from different parts of my body because they had already taken from my inner thighs multiple times, and they were showing effects of that. She used fat from my abdomen.
When your fat dies, sometimes instead of absorbing back into your body, it can form an infection. That’s what happened across my whole chest.
I was on an IV and morphine until it went away. Then we proceeded with another fat grafting session since that one didn’t work.
On May 2th, 2019, I had my last surgery — which was surgery 20 — to implant more fat and put in the implant finally. What they do is they add the muscle, fat, more fat, and then the implant.
Finally, it’s completed as far as the major surgeries. To me, it’s a victory to have gotten this far. I have 2 mounds that I call my breasts. I still just have 1 nipple, but you know what, I’m fine. If I decide to add a nipple, I will. If I decide to leave it, so be it.
Is there anything you wish you had done differently during treatment?
The nipple thing was a big faux pas on a lot of people’s parts. No one told me that if I left my nipples that there was a high chance of cancer forming there.
If you’re leaving your nipple, you have to have some sort of blood supply in order for it to survive. I knew that there was 5% of the breast tissue left to keep the nipples alive, but I didn’t correlate that with cancer resurfacing.
What I wish had happened is that they would’ve given me all the answers. As doctors and health care providers, they should’ve been giving me all the possible scenarios and answers to questions I didn’t know to ask.
I made the decision that was best for me and my health, but if I don’t even know that something could happen, how was I supposed to ask those questions?
Are there any lasting side effects that you can think of from your surgeries?
With regard to the LD surgery, my doctor used so many fat grafting sessions so she didn’t have to take so much muscle from my back. I’m waiting to get back into the gym and to my regular fitness training to see if I have any mobility issues. That’s the one possible concern I could have.
Right now, I have to be gentle with my chest because they’re implants. They could always potentially rupture. With regards to my health, I go to an oncologist for him to feel around and see if he feels anything.
As far as lasting effects, my energy level isn’t perfect because of having so many of the transfusions. I have an underlying blood condition.
The doctors don’t quite know what it is. I take a lot longer to heal internally than others. I’m very low on iron, so I have to keep up on my iron pills. Other than that, I really live a full life.
What is your follow-up surveillance?
I don’t have MRIs regularly anymore, and to be honest, that’s the only thing that would keep me 100% worry-free because that’s the only thing that gives you all the answers you need.
Mammograms and ultrasounds don’t work for me anymore because I have implants. It’s a matter of physically feeling around and watching how I feel.
When I was diagnosed, I didn’t feel sick. I didn’t feel pain. There was just the lump. It’s like I don’t know what to look for, and I’m relying on the doctor to feel around and make sure nothing is wrong, and even that doesn’t give me confidence really.
It’s a matter of minutes in the appointment. I’m considering finding a new oncologist because of that. You have to advocate for yourself because you have to feel confident. If you don’t feel confident with your doctor, find a new one.
Hormone Therapy
Describe the physical impacts of the hormone therapy
To be honest, there were a lot of low points in the first 5 years. When I got diagnosed, I was on the tamoxifen. The tamoxifen can throw you into early menopause. With that comes a lot of emotional struggles.
Describe the mental and emotional impacts of hormone therapy
When I speak about this, I’m very candid about it because women have to understand that when they’re on tamoxifen or any other medication like it, you’re going to feel a lot of side effects.
You’re on it for 5 years or more, so you have to learn how to deal with it.
One time I was driving home from my godmother’s house with my 3 kids in the truck, and I felt this overwhelming feeling to turn the wheel and drive the car over the bridge or to drive the car into another truck. It was just so overwhelming.
The drug plays tricks on you. You become depressed. There were a lot of dark moments. I recall a lot of times in the shower, wanting to be in the dark just sitting in the tub.
Quality of Life Reflections
The emotional impact of treatment
A lot of people think reconstructive surgeries are just reconstruction. You’re going through a lot of emotions because you’re not just fixing your physical body. It takes you back to the real reason why you’re even having the surgery in the first place.
You have to deal with the bad C-word: cancer. Like I said before, it’s hard not to associate cancer with death. You worry for your children. You worry that it’s going to come back. You just worry all the time that you’re not going to make it through surgery.
Even though they’re cosmetic or sort of routine-seeming surgeries, you’re always scared you won’t make it through because anything can happen. Each surgery I had, it played on my mind.
Even after this last surgery, I still think about it. I wonder if it’s ever going to come back. I don’t let it consume me, but I do wonder. Now that I have implants and that physical part is built back, I sometimes wonder if I risk masking cancer if it comes back.
I think that’s a big reason why a lot of women choose not to rebuild. They don’t want to hide the possibility of finding the cancer again at a later date if it shows up.
I trust in the technology and doctors, and I trust in God. I try to live my life as best as possible. I try to do good and support and give back, and I feel that I’m putting positive light out into the universe and hoping to get some of that back.
What helped you deal with this level of stress?
I went to my family doctor and said, “Something’s got to give here, because I’m not doing well. I’m arguing with my husband about things I wouldn’t ever argue about. I took a trip to Mexico for a week by myself. I’m doing all these crazy things.” I knew something was going on.
She put me on a very light antidepressant to bring the melatonin levels up to the happy place. I don’t know that I like this idea — give me medication to fix a problem and another to fix the problems the other caused — but it helped. I was weaned off of it within 7 or 8 months. That limited the stress.
In that time, I went to counseling, and I learned how to limit my stress levels because stress is a killer in and of itself. I knew I had to keep that under control. I knew I had to contain myself because I knew I couldn’t keep welling up like that.
I know that God spared me 3 times in not giving me such a late stage of cancer each time it was found. We had it taken care of. I knew I was here for a reason. I try to do things right. I eat well, exercise, give back, and I talk.
Speaking about it is what’s really helpful. When you get all the heavy stuff off, it’s almost as if you’re saying, “Here. Someone else carry this for a while.”
It feels so much better and so much lighter. That’s what I do right now as a business, and it’s really helped me.
How important is it to have caregivers and support?
There are caregivers in many forms. There are your doctors, obviously. There’s your partner. They’re the ones that are going to give you emotional support you need.
There’s the support of your friends that’s going to take loads off as far as your kids and activities they need to get to, and your house — helping keep it in order when you’re low. Your parents are there to give support.
There are your church and people of faith around you to help you build yourself up within. Without having that, it doesn’t make sense. If you don’t have faith that you’re going to be okay, you’re probably not going to be okay. You have to put the positivity out there in the universe, and that universe for me is my faith.
Your children give you support, too. They remind you that you always have something to look forward to. You have to be here to see them grow. You have to be at their graduations, games, weddings, and all that. It motivates you, and that’s caregiving.
How was it being a young mother and being diagnosed with cancer?
Because it spanned for so many years, I had to deal with it in different ways. My oldest is 19 now, the middle is 14, and my youngest is 11. In the early years, my youngest, my son, was a newborn. My middle would’ve been about 4, and my oldest would’ve been about 9.
They were too young to explain the details. They knew that Mommy was sick and she was going to have surgeries, but she was going to be okay.
As the years went on, they knew I had cancer, they knew it was in an early stage, and they knew I had to be on medication to keep the cancer from coming back. They knew I was going to rebuild and that I have fake boobies. They would see my prosthetics in the bathroom, or sometimes I would just take them off because they’re uncomfortable.
When it came back in 2016 is when I sat down with all of them. At this point, it was a different kind of conversation. I didn’t want to keep things from them. This time, I told them it was the cancer I had before but had come back again. I told them it was going to go away, and I wouldn’t have to go through chemo or radiation, but I was going to need more surgeries to get rid of it. They understood.
They were still concerned, but I had to reassure them over and over again that I would be okay. I can only imagine what they were going through in their heads. I know how my husband and I felt when the cancer came back, so I can only imagine what they were going through. That was the hard part for me.
I needed to learn how to not wrap myself so much in the fact that I was in so much pain, and I needed to be there for my kids. I think that’s what forced me to get up and going so soon after all the surgeries.
I needed for them to see me normal. For me, it would mean that they knew I was okay. I think had I been in bed all the time, they would’ve thought I wasn’t okay.
My eldest daughter is like her dad. She’s more stoic. She wasn’t around with me much. She would ask if I needed anything, and she would message my other daughter to see if I was okay, but she stayed in her room a lot.
Much like my husband dealt with it, she was worried. She didn’t like to see me in pain. Seeing me that way was hard for her.
That’s part of what I’ve learned through my healing process. I had to learn how other people grieve and deal with emotional struggle. People deal with it differently, but that doesn’t mean that one cares less than the other does.
I saw an additional oncologist other than the initial doctor and aside from the chief head surgeon. They sent me to an oncologist. It was like I was the doctor, and he was the patient.
He said, “You had the mastectomy, so you don’t need to do anything. You’re good.” I said, “Well, what does that mean?” He said I was going to see the chief surgeon at the hospital, and he would tell me what to do next.
I said, “They sent me to you for a reason. I didn’t have a mastectomy. I’m going to have a subcutaneous mastectomy. They’re 2 different things.” He said, “Oh. Let me look at the chart.”
If you’re a doctor, you should be right. There’s a difference between the subcutaneous mastectomy and a mastectomy. The subcutaneous mastectomy where I left my nipples is why the cancer came back the second time.
If he was being diligent and looked at his chart, maybe he could’ve advised me further and said, “If you’re concerned about it coming back, you should know there’s a possibility of nipple cancer.”
I didn’t know about nipple cancer back then. After getting it, I realized there were so many things I didn’t know. I researched some more, and the onus should’ve been on the doctors.
Do you have any advice on self-advocacy for others?
You’re not just a number. These doctors have a lot of patients, but you’re a human. You go in there and let them know you’re not a number. You have concerns about your health, and your doctors should be concerned about you.
While you’re there, if you don’t understand something, tell them. If they say you need to do something and you don’t understand it, say something. If they’re failing to tell you that you need to do something, ask.
If there’s something that another doctor has recommended and this one isn’t, bring it up. I think that women should find another doctor if they’re not comfortable with the one they have.
Perhaps bring someone with you. In your time of turmoil and stress, you’re not going to have the wherewithal to ask all the questions you need to, so bring someone with you.
Research, ask questions, [and] tell them you want all your information so you can take it to another doctor if they’re not meeting your needs. You’re entitled to your scans. That’s your body.
If you don’t understand the lingo, tell them. Say, “I don’t understand what you’re saying. I’m not a doctor. Can you explain that to me?”
How was the financial aspect of going through treatment?
I’m in a position where we’re financially okay. I could stay home and not work a day in my life. My husband’s business can take care of everything, but I’m not that girl. I’ve been working since I was 13. I love to work. I’m an independent woman. I like to have my own money that I know I brought in.
I like to activate both sides of my brain. I’m creative. I’m a licensed paralegal, but I’m also a decorator and stager, motivational speaker, and makeup artist.
I have my hands in a lot of things part-time. I don’t overdo it because physically, I need to take care of my health. I work as casual as I want to.
In Canada, we have unemployment insurance. You pay into that when you’re working, and it can kick in if you apply for it, but it only covers part of it. Your bills are not going to change just because you’re sick. Your mortgage isn’t going to change because you’re sick.
You want to keep your children in some normalcy, and life must go on. What happens then? For a lot of people, it is hard. I haven’t had the issue, but I understand it. I help women I talk to now with their utilities, groceries, transportation to and from the hospital, things like that.
Your cancer inspired the work you do now
In 2016, when I realized I had been through cancer 3 times and was still standing, I had to do something with that. There was no reason why I shouldn’t be imparting what I’d learned through my experience to women who might be in a similar situation.
I went through all those stages of healing until I got to an end stage of philanthropy, where I just felt so overwhelmed and wanted to give back. I wanted to share how I was able to persevere through each circumstance. I wanted to show that I’d been through the dark times and depression and prove that you have to persevere. At the end of each day, there’s a beginning of another.
High Heal Diaries is a platform where women can share their stories with other women. Nobody’s judging anybody.
The platform comes in different forms. I do a YouTube talk show. I do the keynote speaking engagements. I do life-coaching. I’m a certified coach practitioner. For those not at a place yet where they are able to speak about their issues in a public form and want help, I can help them get there. I do inner and outer beauty makeovers.
I believe in look good, feel better. I believe when you feel good on the outside, it transcends and transforms how you feel on the inside.
If you look in the mirror when you’re sick and think you look horrible, you’re going to feel horrible.
If you put a little makeup on, get your hair done, and you smile at what you see in the mirror, you’re going to feel happier. If a woman is going through a struggle, we’ll help them with wardrobe shopping, maybe a little makeup, skincare, facials, whatever, in order to help them feel better about the outside and then coach the stuff on the inside.
What is your “new normal” after cancer?
The new normal is really busy. The new normal for me is living a good, full life. It is not taking everything on. I’ve become a little more selfish. It’s not a bad selfish. I come first. If I’m not good, then nobody else is going to be good.
For my kids, if I want to sleep until 12 in the afternoon, they’re old enough to go downstairs and make themselves breakfast if I need to rest. Far too often, women put everybody else in front of themselves. We mask all of our issues. We take care of everyone else, but we mask our own.
On top of that, I don’t want cancer to ever come back. I think I’ve learned what I need to learn now. I would never take away the fact that I had cancer, though. I would never change that part of my life because I’ve become a better person.
I wouldn’t be doing the things I’m doing now had I not had cancer. It’s sad that this had to happen, but sometimes these are the kind of things that have to happen before people realize that they need to change things up a little bit.
Do you have any final words for anybody who may be going through something similar?
I just want women to understand that there are a lot of things out there in society and the environment that we need to cognizant of as far as what we’re putting in our bodies. I’m not going to go off on a tangent about doing all these drastic things because everybody’s going to do what they need to do, but a lot of times we just live, and we do. Sometimes we need to think of how we live and what we do because everything has ramifications.
Also, I’m not preaching. I’m not one of those Bible thumpers, but you have to believe in something. You have to believe in a higher power, because we are not doing it on our own. You have to believe that although you might be sick, you have to pick up and keep going as best as you can.
If you have a cancer or struggle that you feel like you can’t make it out of, you need to be able to say, “If tomorrow I’m taken away, at least I can say that the life I lived was happy and I did things right.”
The life you’re living right now, make the most of it.
Alison’s Stage 4 Triple-Positive Metastatic Breast Cancer Story
Alison shares her stage 4 triple-positive breast cancer story. She was diagnosed at just 34 years old after finding a lump under her right arm and breast area. She details undergoing chemotherapy, mastectomy, radiation, and targeted therapy.
In her story, Alison also highlights how she dealt with 2 relapses, how she parented with cancer, the impact of the diagnosis on her relationship with her spouse, and the support that helped her most.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
As much as you can, try to take it one day at a time. It can feel really overwhelming if you try to look at the whole picture. If you can keep focused on what’s going on today, it’s a lot more manageable.
Something else that’s helpful for me is journaling. I write about things that have worked out and things I’m thankful for. That helps me stay grateful in hard times.
Alison R.
Diagnosis
Can you talk about your first sign that something was wrong?
We had moved from Nebraska to California, but I was back home with my kids visiting family. I felt a lump under my arm. My mom is a nurse, so I had her feel it. She asked if I had anything on my breast. We started looking, and sure enough, I felt a long, flat spot on my right breast.
She said it was probably nothing but suggested I go ahead and check with my doctor when I got home. I was visiting for about a week, so when I got home, I went and saw my OB.
She said, ‘You’re young. It’s probably nothing, but we’ll check it out.’
We did an ultrasound first because I was breastfeeding and couldn’t do a mammogram. We did an MRI next. Then we did the breast and lymph node biopsy.
What was the biopsy like?
They were fine-needle biopsies, and it was an interventional radiologist who did them. They kept saying that the biopsies weren’t going to be bad, but it was actually more painful than I expected.
The one in my breast wasn’t that bad, but the one in my armpit (the lymph node biopsy) hurt. They hit a nerve the first time.
I still have some numbness in my ring and pinky finger from that. Under my arm was sore, and I had more swelling than I expected. The breast biopsy wasn’t a big deal.
How did you receive your diagnosis?
The doctor called and said they had my results, if I wanted to go ahead and come in. She told me it was breast cancer in the breast and the lymph nodes. My husband left work to head there. It was just me and my 18-month-old daughter when she told me.
I realized then that I was prepared for it to be breast cancer, but I wasn’t prepared for it to have spread to the lymph nodes.
I was a little bit shocked. I took in the information, and I was crying. My daughter was on my lap, and she was like, ‘Be happy, Mommy.’
About that time, my husband walked in. I let the doctor tell him. We hadn’t really told anyone that I was getting tested for anything when I got the diagnosis.
We wanted to gather all the information and handle our own emotions before taking on the emotions of others as well. I called my parents on the way home.
A friend of ours takes all our family photos. Her mom died of ovarian cancer and had the BRCA gene. She’s had a prophylactic mastectomy.
I knew that even if it wasn’t cancer, there was a chance they’d have to remove it. Before I got the diagnosis, I had asked her to take boudoir photos for me.
I just wanted to capture my body how it was even if it wasn’t cancer because I knew it could still change it.
I don’t know why I thought of it at the time. It was for my husband. Then I found out it was really for me, too. I’m really thankful I did that.
Since then, I’ve had a mastectomy, but I’ve never had reconstruction, so I’m really glad I have those. Because of her history, I think it was special for her to do that with me.
1st-Line Treatment
What was your treatment plan?
I had a lot of testing, and we first met with the surgeon. He was friends with the oncologist. He messaged her when she was on vacation, and she called me. That was amazing.
They wanted to do surgery, but because of the size, they decided to go ahead and do chemo first to shrink it before surgery.
You underwent genetic testing
My HER2 test results came back equivocal 3 times, so it felt like a long time waiting in between getting diagnosed and starting treatment.
When we finally found out I was triple positive, we could start. That was about a month later.
What was your first chemo regimen?
I started with TCHP chemotherapy regimen — taxotere, carboplatin, Herceptin, and Perjeta. The first time I went in, it was a really long day. I got all of the pre-meds and chemo drugs on the same day. Then, 3 weeks later, you get the next round of them. I did 6 rounds.
After the first round, I ended up with a neutropenic fever. My white count got really low. I ended up in the hospital. Everyone who came in had to be gloved up. My husband thought I was going to die. I didn’t have that fear at the time, but he did.
After that, my white count came up, and we continued, but I took Neulasta after infusions. I used Benadryl, Claritin, and ibuprofen each time I got a shot, and that prevented the dreaded bone pain.
I got mouth sores, and those were not fun. I tried the Magic Mouthwash. I tried a steroid paste. I tried viscous lidocaine.
The doctor started me on Acyclovir and I didn’t get mouth sores after that.
I lost my hair. I shaved my hair before chemo. I had my kids do it because I wanted them to have some control, and I figured it would make more sense to them. I went ahead and shaved it so I could donate it, because they wanted it pre-chemo. Plus, it made more sense to my kids.
My taste buds would be okay for a couple of days, then things would start to taste funny. By the time it started to feel better, it would be time to start the next treatment.
I had fatigue. I didn’t ever get nauseous really. They managed that well, and for the most part, I think my body tolerated the chemo pretty well, too.
I would do labs before doing chemo each round. After the 6 rounds, we did a breast MRI. I didn’t do a PET scan. I had actually begged for PET scans, and nobody would do it. On the breast MRI, it looked like it was pretty much gone.
I did a bilateral mastectomy and right axillary lymph node removal. I had my nipples removed, too. I just wanted to be really sure that I was reducing the chance of having a recurrence.
I was okay with all of that. It did feel weird to lose my nipples, but my doctor said it reduces the chance of recurrence, so I said okay.
To prepare, I was just in a fight mode. I wanted to stick around for my kids. I wanted to be more aggressive.
I have a friend who had been through breast cancer and a cousin in Texas, and they both shared their experiences with me. I talked to a few people who had been through it before.
Right before surgery, I remember feeling nervous about the anesthesia. I didn’t want to wake up during surgery. The nurse navigator reassured me that there were people whose only job was to keep me asleep.
What do you remember of waking up from surgery?
I was in some pain when I woke up. I had a compression garment over my chest. The surgeon wasn’t as empathetic as I would’ve hoped he would be after surgery. I wanted to see my chest after surgery. He was basically just like, “Well, it’s going to look freaky.”
The nurse navigator offered to look with me. I removed the garment, and I remember seeing the staples across my chest. I didn’t feel highly emotional about it or anything.
I had a lot of swelling. The mastectomy wasn’t really painful in my chest, but under my arm was really sore. I had drains in. I had a post-mastectomy bra that had pockets for them. I was nervous to get the drains removed, but it wasn’t as bad as I thought it would be.
What was radiation like?
After recovering from surgery, it was time to start radiation. I met with the radiation oncologist. I went in, and they did an MRI and mapping. They planned out where they were going to radiate.
They would take me in, get everything lined up, walk out, and then radiation itself was so fast.
There was this picture on the wall of a lake scene. I think it was meant to be comforting, but it just made me feel like I was going to die. It wasn’t a terribly scary process, though.
I was mostly just tired. I had quite a bit of fatigue. That lasted a couple of months, even after radiation had ended. I also had some minor burning on my skin in the areas they radiated. I had Silvadene cream for that, though, and that helped.
Switching oncologists
We moved from California back to Nebraska, so I switched oncologists then. It is hard because you develop some trust with your team.
Luckily, my oncologist in California recommended a doctor she was on the ASCO board with. It was orchestrated seamlessly.
You had some more treatment after NED (no evidence of disease)
I had been on Lupron injections to shut down my ovaries since my cancer was ER+. After radiation, I started on Arimidex, which is an aromatase inhibitor to suppress any other estrogen. That’s just a daily pill. I also had to finish up 6 months of Herceptin infusions.
I had gotten my port taken out during my mastectomy because my daughter lays on my chest, and her head would always hit it.
That was okay, though, because Herceptin isn’t as hard on the veins, so I just got it infused through an IV.
How were you feeling after you finished treatment?
I was getting back into my normal life, but that was a time filled with a lot of stress and anxiety for me.
I was seeing my counselor for my anxiety. He asked, “Has your mom or husband talked to you about taking anything for your anxiety?”
I would fixate or obsess over things during that time. I ended up started on a low-dose of Effexor XR, and that has helped tremendously.
Relapses
How did you find out you relapsed?
I felt something in my neck. There was something that felt familiar about it. It felt like what was in my armpit originally. We did an ultrasound and biopsy of that.
I was at the movie theater with my kids. My oncologist’s nurse called, and she said, “I’m so sorry. It is breast cancer.”
That was harder than the original diagnosis. I had the fear that it was going to come back, but I never expected it to happen that soon.
I had known enough to know that stage 4 was so much more serious.
My husband came over, and I said, “Well, I need to go to Houston to get a second opinion. I need to call the doctor.”
He said, “No. What do you want to do right now? The kids are about to walk out of the theater.” We agreed he would take the kids home, I would go for a jog, put the kids to bed that night, and talk after that.
I wanted to get a second opinion at MD Anderson and at Salem Oncology Center because my cousin had seen a doctor down there. He didn’t take insurance, but our cousins and godparents helped us financially so that I could start treatment with him.
What was your chemo like the second time?
I started treatment at Salem Oncology Center. My dad went down with me. We arrived on Sunday, and I went in to get a port put in again. I got wheeled straight into my new doctor’s office.
I did gemcitabine on Day 1. Then I did cisplatin on Days 4 to 6. He would fractionate it. He gave me the full dose over those 3 days. That wasn’t as toxic on my body.
A few days later, I’d get gemcitabine again. Then I’d get 5FU and leucovorin. The next week, I’d get gemcitabine again, and then I’d have a full week off.
I didn’t lose my hair on that regimen.
I had a few mouth sores, but we figured out a dental paste that helped. I used viscous lidocaine. I didn’t have a lot of side effects with this regimen.
After one round of chemo, we did a CT and PET scan. I had a 60% reduction. I stayed for one more round. Then I came back to Nebraska. I found an oncologist in Lincoln who was willing to do it, because it was working. I did a few more rounds with him.
I was in complete remission again after that.
What happened when you went into complete remission?
Once I was in remission, my doctor in Nebraska wanted to stop chemo and start radiation again. My doctor in Houston wanted to keep the chemo going. We had another decision to make.
I met with another oncologist here in Lincoln who happened to know my doctor in Houston. They worked together for 17 years. I made the decision to keep going with chemo. I had to find another local oncologist who would follow the protocol. I found one in Omaha.
He was comfortable working outside of the box. He said because patients aren’t standard, treatment doesn’t always have to be.
Relapse again
I found another tiny lymph node in my neck. I asked to push my trip to Houston for an early scan. The radiologist just thought it was an active lymph node. My doctor said he trusted my fingers, though, and the radiologist did a fine needle biopsy.
It came back positive for cancer. My doctor wanted to switch my protocol. I went for a month of treatment. I did another round of chemo down there.
Then I came back to Nebraska, did another round or 2, and I was in complete remission again.
At that point, I did consolidation radiation. I did that here in Nebraska. They put the thin mask over you, and it hardens.
They’d hook me in, and I would panic a little until I could swallow the first time.
I lost 15 pounds or so during that radiation because it was just on the edge of my esophagus. Eating became difficult, so I was just doing a lot of shakes and stuff, so I think that’s why I lost weight.
I did chemo during radiation. That regimen was Adriamycin, cyclophosphamide and Abraxane. They added Herceptin back in as well.
During radiation, he took me off of Adriamycin and put me on capecitabine instead.
Are you in remission currently?
I was back in remission, but I did a couple of more rounds of chemo again. Then, once I was in remission, I would do a month of chemo on and then a month off. After a year of doing that, I moved to doing 1 month of chemo and 2 months off for a year.
At some point, I hit the lifetime dose of Adriamycin, so they switched that out for Navelbine. I’m currently still doing 1 month of chemo and 2 months off, but I’ve been in remission since August 2017.
If I stay in remission for a while, there might be a point where we spread it out even further or where I don’t have to do chemo at all, but for now, I’m just taking it one step at a time.
Reflections
How have you handled this mentally and emotionally?
I have wonderful friends and family, I see a counselor, that low dose of Effexor XR helps tremendously, and I’m a believer. I pray. I feel like God has given me the strength I need. He’s brought so many people into our lives. He’s been so faithful that I trust even if I do die, He’s taking care of this.
I used to worry about dying as it related to my kids. Then it clicked one day. I can’t worry about not being their mom later. I’m their mom right now.
I have to focus on right now. I accept grace for each day. I can’t know what’s coming, but when I get there, I’ll have grace for that day, too.
I’m not as fearful as I was in the beginning. Now, I feel like I’m able to be realistic about death, but I also know I could be around for a long time. I don’t know which one is my future, but I’m at peace with that now.
How is it being a parent with cancer?
They were so little when I was diagnosed. Now, my son is 8, and my daughter is 6.
About 2 years ago, my daughter’s friend’s mom died from breast cancer. That was the first time my son brought up death and cancer.
He said, “Mom, did she die from her chemo and her cancer?” I had to say, “Yes, she did.” My daughter said, “Mom, are you going to die when I’m a kid?”
I said, “I don’t know. I hope not, but if I do, you have Grandma, your aunts, and your dad, who all love you.” We have those conversations now. We talk about how some people die from cancer, but others don’t.
We’ve also been very sure to use the correct terms in order to not confuse them.
We’ve made it very clear that Mommy has cancer and has chemo. We don’t say, ‘Mommy is sick and needs medicine.’ We’ve made it clear that they don’t have cancer, Daddy doesn’t have cancer, and they can’t get it from Mommy like a cold.
It’s brought us a lot closer. We’ve had to get even clearer in our communication. It’s given us the opportunity to have some really deep and hard conversations.
He’s really good at bringing me back to the moment. One time, I relapsed, and I said something about wanting him to get remarried but would wish it could be me.
He said, “That’s not happening right now. Let’s think about what’s happening right now.” He brings me back to the present moment a lot.
We talked about how it was a hard thing at first to let people help. He still has to work through some of that, and I do, too.
Thankfully, we have insanely generous cousins, who gave us the money to be able to start treatment in Houston. That was hard on my husband because he felt weird accepting that. He wouldn’t even buy himself a candy bar for a while.
When I do treatment in Nebraska, it’s covered by insurance. My doctor here said that insurance could decide at any point to not cover it, but my medical team works really hard.
We have a high deductible, so we just save in other ways and are careful with our money.
Can you talk about hair loss?
You never know if it’s going to bother you, but thankfully it didn’t bother me. Except there were times when I didn’t really know how to dress and be bald.
The second time, when the kids shaved my head, they were really mad. They didn’t want me to lose my hair. They were mostly okay with me going bald.
I did have wigs and hats, though. I posted a picture on social media of me in all the different options. That way, if I saw someone, it wouldn’t be awkward for them.
Then the third time I lost my hair, my kids wanted me to wear the wig. I’d ask if they wanted me to have hair or no hair, and they’d always choose the wig.
I was a little bit bummed when I lost it the second and third time because I looked sick. When I was going through treatment and didn’t lose my hair, it was nice because people didn’t necessarily know.
My hair thins now, but it’s nice to still have it. It’s better than not having it. I’ve gotten to try out all the short hairstyles I was always too scared to try before cancer.
Some of our friends distanced themselves because they didn’t know how to handle it or deal with it. Other people stepped up.
Now, I think everyone is more comfortable with it. People brought meals, care packages, and offered to help with the kids.
One thing that happened when I relapsed was one friend had a bunch of people dress up in superhero shirts and send me pictures. That was nice because it was so encouraging, anyone could do it, and it didn’t cost them anything.
The care packages were always so nice. I got a lot of lotion made for someone going through chemo, scarves, blankets, and so many helpful things.
Even just a text or note of encouragement went such a long way. Having someone just say something is great. I think sometimes people don’t know what to say, so they just don’t, but just say something.
Ask, “How are you today?” I think, “How are you?” is a hard question.
What advice do you have for someone who has just been diagnosed?
As much as you can, try to take it one day at a time. It can feel really overwhelming if you try to look at the whole picture. If you can keep focused on what’s going on today, it’s a lot more manageable.
Something else that’s helpful for me is journaling. I write about things that have worked out and things I’m thankful for. That helps me stay grateful in hard times.
Advocate for yourself and ask a lot of questions. Find an oncologist you’re comfortable with. Especially if you have late-stage cancer, keep going until you find someone who’s willing to fight as hard as you want to.
Shari’s Stage 4 IDC Triple-Positive Metastatic Breast Cancer Story
Shari shares her metastatic breast cancer story, which began with her finding a lump in her breast. She details undergoing a lumpectomy, chemotherapy, and radiation.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
I noticed the lump in December of 2015. It appeared out of nowhere. It wasn’t sore or anything. It didn’t change or get bigger after I started watching it.
I really didn’t have any other symptoms that were apparent. I had decided to get back into shape in the fall. I had done that before and not had any issues. This time around, though, it was harder. It was weird for me.
I did notice a little heaviness in my chest, and now in hindsight, that might’ve been something that was a symptom of the cancer.
How did you get diagnosed?
I had a mammogram the next April. The radiologist saw that mammogram while I was still there and told me I needed to go see an oncologist.
I had saline implants, so instead of a needle biopsy, they went in surgically for a lumpectomy. It was a same-day surgery. The next week, I got the diagnosis of breast cancer.
Results of the lumpectomy
They took out the lump, and the margins were fairly clean. They said they had good therapies for triple positive and HER2, but then they wanted to check the lymph nodes. They did a PET scan.
The day I went back to the oncologist to start my chemo while waiting on the full diagnosis and staging, I found out it was metastatic and I was stage 4.
That was a lot to take in that day, but the treatment was still the same. My oncologist said it was a lot of information for me to take in on one day and was willing to reschedule my treatment, but I didn’t want to. We were treating it aggressively.
I was there and ready and wanted to get started.
How were you thinking and feeling after the diagnosis?
My original oncologist isn’t my oncologist now. His bedside manner isn’t the greatest. The day he gave me the diagnosis, he kept asking, “Do you have any questions?”
We didn’t know what to ask. Finally, my husband asked about prognosis. He said I had 2 to 10 years, depending on how well my body reacted to the treatment.
By the time I got home, I’m Googling everything. I read that the next place it can go is to your brain, which the doctor didn’t even mention. I’m thinking, “Is it there, too?”
We hadn’t done any testing for that. My surgeon ordered an MRI for me, and at that point it was clear, so that made me feel better.
My husband and I just thought of it as a chapter and something we were going to get through. It took a while to realize that this would be the rest of my life. We’ve definitely started living our lives how we want to.
There’s always a reason to not go on vacation or something, but now we don’t let those things get in our way.
My husband was there with me. He’s always there with me. I have 4 adult boy children. I told them all early that I had cancer and thought it was early stages. I had to call them all back and tell them it was metastatic, and they all dealt with it like they do with Google and research.
My parents had a hard time with it. One of my first thoughts was, “Am I gonna outlast my parents?” We told our closest family first, and then I had to tell work because I knew I was gonna start losing my hair.
It was same-day surgery. It was no big deal really. The biggest thing for me was after surgery and recovery and seeing the indentation in my breast on that side, because now it doesn’t look like the other one.
The recovery was very quick. We were back in surgery the next week to look at my lymph nodes and to get my port put in.
The lumpectomy was no big deal. It was a couple of stitches, and that’s about it.
What was your chemo regimen like?
I had 4 rounds of Herceptin, carboplatin, and Taxotere. I had infusions every 21 days. I would get infused on Fridays. The first couple really weren’t too bad. They didn’t feel great, but it wasn’t bad.
After the first one, I went back to work on Tuesday, and I realized I had been walking around in a fog all day. We started working from home the week after the infusion. I would go to work when I was able to and just did what I could.
The CT scan I had at the end of the chemo, that showed significant improvement. The oncologist said I didn’t have to do any more yucky chemo at that point unless something changed, but I did continue the Herceptin once every 3 weeks. I’m still on that.
What was the worst side effect you experienced from chemo?
I never threw up really, but I had underlying nausea all the time. The one time I threw up was after my second round.
I started feeling better, but I did too much. It was 10 p.m., and we had been out. My husband kept saying, “Are you okay? We can’t overdo it.”
Around that time, I had violent throw up for a couple of sessions, and then that was it. It had to have been that I just did too much.
My body was trying to tell me to rest. After that day, I knew.
By the next March, I had another repeat scan, and I had no sign of any active disease.
I switched oncologists. Nothing changed in my treatment, but now there’s a person I can talk to about anything. I went in for the results, and he says, “I understand you thought you got the wrong results.”
I asked him what no evidence of active disease meant. I asked if I was in remission, and he said no. I had to remember how much cancer was in my body and that it was stage 4 and metastatic. They don’t necessarily say remission, but they did say no evidence of active disease.
That didn’t mean there was no cancer left in my body, but it just means that everything that we’re doing is keeping the cancer at bay.
It was after that that I started wondering what the rest of my life was gonna look like. That’s when I started to go on Facebook groups and things like that. I tried to find other metastatic cancer patients.
Metastasis
Metastasis to the brain
In July, I was out for a walk after work, and I started having this really weird thing go on with my ears. It was more on one side than the other, but it was like my ears needed to pop. I knew that wasn’t what it was, though.
It concerned me. It wasn’t going away. The next time I had my regular visit, my oncologist wasn’t there. I talked about it, and I felt like they just brushed it off. I paid attention to it. It didn’t go away.
The next time I saw the oncologist, I told him I was having an issue, and sure enough, I had mets in my brain. I had stereotactic radiation. It was pinpointed to the spots.
How do the brain mets affect you mentally and emotionally?
The brain stuff scares me more compared to anything else. I’ve always worked, and I wonder if this is going to eventually take that away from me.
I worry about my memory. I’m always really paying attention to that, and so far it hasn’t been an issue.
Once I went in and had my first radiation, I found out it wasn’t that big of a deal. I had a headache later on that day, and I was tired until the next day, but other than that, it wasn’t really hard.
After that, I started having an MRI every 3 or 4 months. Before, I was like, “Oh my gosh, what am I gonna do when it goes to my brain?”
Well, now I can go in and get treated with pinpointed radiation, and I know what that’s like. It’s not scary anymore.
When I hear whole-brain radiation, that freaks me out, but I’m not to that point yet. When I do get there, I know I’m probably done working.
That’s what I gather from other people’s experiences I’ve read about. I try to not get too tied up in it. It can be pretty scary when you read how bad it can get.
What’s the targeted radiation like?
They do the mask. It’s like going in and having a facial first because they have to make the mask, which is no big deal.
It’s weird, though, because they screw that mask down onto the table. You have to be very still.
I always keep my eyes shut when I go into all the machines, but even still, I felt like I could see some light or something.
The first time is scary because you don’t know what to expect.
It’s noisier than your scans. You’re in there longer. I was in there for an hour and a half like that the first time. It’s scary, but it’s doable.
The next time I did it, it wasn’t scary anymore. You just have to go somewhere else in your mind to get you through it, and then it’s over.
It’s weird how you get used to all these things you have to do.
Originally, yes. When I think back on my first PET scan that showed I was metastatic, I wasn’t freaking out waiting for those results.
Maybe that’s because I didn’t know much about it. Ever since that first one that shook me, now the follow-up scans do make me anxious. My husband and I deal with that, though.
First of all, we don’t talk about it. We know it’s on the calendar. We get up that morning, and we both know we’re going to a PET scan before work. We just don’t talk about it.
At this point, I don’t tell too many people I’m having a scan because I don’t want them bringing it up and reminding me.
We do a couple of things that help a lot. We tend to plan our vacations around the time of the scans. Sometimes, we’ll go right before a scan. I might be on a 2-week cruise, and 2 days later, I’ll have a scan. Other times, we’ll schedule a trip for right after a scan.
We do that because we figure if I get a really bad scan result and I have to change my treatment, it’d be really nice to have a break from life beforehand.
We have gone on a 2-week trip every year since my diagnosis and a bunch of little ones in between. I would rather look forward to the next trip than dread the next scan. That’s helped both of us. It’s always in the back of your mind, but that helps.
Another thing that’s helped is control. With cancer, you’ve lost control. When I have my PET scan, I have it early in the morning and early in the week.
That way, I know I can get my scan, go to work, and that day after work, I can go pick up my results. That way, I know right then whether I need to be freaked out or let it go.
So far, things look good, and I don’t have to worry. Same thing with my MRI results. They usually pop up on my portal the same day if I get them done early.
It probably took me more than a year to get there. You read people talking about a new normal and how to find it, but for me and how I choose to deal with things, it took me a while.
It was hard for me when my hair started coming back and people didn’t think I was sick anymore.
They started saying, “Shari is a survivor!” Am I? I like to think of myself as a thriver, but I guess as long as you’re alive, you’re surviving.
Dealing with people thinking you’re fine when you’re not just because you don’t look sick anymore is really frustrating. I’ve gotten really active on social media because of that.
This isn’t just about me. This is about anybody that has any kind of illness where they don’t look sick. There are so many kinds of cancer. Not all chemo makes you lose your hair. You don’t barf with every chemo. Even if it does, there’s a lot of nausea meds.
I’ve done a lot of educating people because of this and that mindset shift. I’m an open book because I don’t want people to be naive.
I’m optimistic, but I’m realistic. I never know what the next scan holds or where I’ll be in the next 2 years.
If I go into remission — if someone wants to say it that way — fine, but I know it’s coming back. Don’t tell someone they’re cured, because the percentage of recurrence is so great.
Anybody who tells someone that they’re cured and their cancer is 100% not coming back is a liar. They can’t stop cancer yet, and there will be a cure when they can.
What has been the hardest thing for you mentally and emotionally?
The fact that people don’t know that I’m not fine. For a long time, I was really scared. Meanwhile, people think I’m cured and fine because I’m walking around with hair. Well, I’m also walking around with cancer in my brain.
When I realize that people still don’t get it, it’s hard to deal with. I used to get kind of pissed off about it, but I don’t anymore.
When someone would say, “This is Shari. She’s a breast cancer survivor,” I’d be like, “Wow they still don’t get it. How many times do we have to say metastatic?”
I don’t act like I’m sick, but I am sick. My life has completely changed because of it, so I don’t know how people can’t understand that.
You never know what someone is going through.
Before I got sick, I don’t think I had much empathy for someone who was going through a chronic illness of their own. That included my own mother.
Once I went through chemo, and even since, I realize now that life changes drastically because of illness. I’m much more empathetic now towards people because of that.
Can you talk about the hair loss?
I knew I was gonna lose my hair around 2 weeks after my first treatment. I ran my hand through it because it felt really dry, and it started coming out.
I made plans with my girlfriends. We had a shave party in my backyard 2 days later. I found out that my head is perfectly shaped.
I put a wig on that night, took it off, and never wore it again. I either wore hats or nothing.
Everybody gave me scarves, but I didn’t like them because they just made me look like a cancer patient. I didn’t like that. I didn’t look like me.
I shaved my head on Saturday and went to work on Monday with nothing. That’s when everyone knew something was going on.
Do you have advice for other people who are going to lose their hair?
Your hair is nothing. It doesn’t make you who you are. It’s what’s inside that makes you who you are. Your hair does grow back, and mine has actually grown back thicker. It grows back a lot quicker than you would think.
If you’re comfortable with a wig, wear one. If not, don’t. I had baby-fine hair and used to hate that. I have a video of the night we shaved my head. I have another one where I’d been without hair for 8 weeks or so, and I said something like, “I always talked really mean about my hair.”
Now, I’m like, “Hey, whatever you want to look like, go for it, hair. Whatever you’ve got.”
Can you talk about self-advocacy?
I didn’t really advocate for myself with the first oncologist much. I did ask about my brain stuff, and he said, “No, we don’t do an MRI unless you’re having symptoms.”
Then I saw my surgeon at a follow-up, told him what he had said, and he said, “I’ll order one for you.” The radiation oncologist said the same thing.
When my oncologist saw the results, he had a very “I told you so” attitude about it. I just said, “Yeah, it sure is nice to have peace of mind.”
I was going to worry, and then I didn’t have to because it came back clear. I was taking control of a situation that was going to keep me up at night.
Months into it, I started thinking, “Can I fire my oncologist?” I knew I was going to be seeing him for the rest of my life. The only reason I was going to see my oncologist was because I couldn’t get in to see the other one for 8 weeks.
I thought since I was going to be seeing him forever, I’d like to be able to see someone who cared about me and knew me. Every time my new oncologist walks in, he has something kind or helpful to say to me.
I consider him a friend. I’m a patient to him, and I understand that, but I see him as a friend. I never felt that with the first guy. I made the right choice.
What advice do you have for other patients on advocating for themselves?
It’s all about how you ask questions. For example, I was on a Lupron shot. That medicine caused me so much pain in my joints. I couldn’t get down on my hands and knees to do yoga to try to stretch things out.
It took me a while to figure out that the Lupron was the culprit. My quality of life was declining because of it. I started reading up on it and what to do.
I asked my current oncologist one day, “Can’t we just take my ovaries out so I don’t have to take the shot?”
He said, “If you had a genetic mutation, then I would say yeah, but since you don’t, no, there’s really not a point.”
I didn’t get the answer I wanted. A while later, I was still having pain. I said, “What do we need to do for me to get my ovaries taken out?” He said, “You’ll need to do X, Y, and Z.”
3 months later, the ovaries were out. It was a simple surgery. By a month after that, there was no more pain.
It was all in how I asked the question. When I do have questions, I try to go in with the right words. If I don’t understand the medical terminology, I’ll ask him to explain it to me a little bit so I can ask what I really want to ask.
A lot of times, if you can come in talking their talk a little bit and be an educated patient, that will get you the answers you need.
Living with cancer as a chronic illness
During chemo, it’s really in your face because you’re so sick. When I was that sick, I realized how many little things I took for granted. I realized how thankful I was for certain things.
Then I started to feel better, and I got away from it again. I got back into my life. I realized I really like the person who was so vulnerable and so thankful for so many of those things.
It’s about remembering that. I think of it as waking up in the morning and being grateful for getting to go to work, because there are people who wake up and can’t get up and do anything.
Cancer & Relationships
How do you and your husband lean on each other?
If I need to talk about something, I tell him I need to talk. He may not want to talk about it, but if I need to, I let him know I need to.
I talk, and I make sure he hears me because both of us are going through it, and that’s that.
I think it takes a while for the patient to realize that the caregiver is dealing with just as much. It might even be harder for them sometimes.
I’m the one that’s going in for everything, but he’s just as scared of losing me as I am of dying. The fact is the person that’s dying is gone, but the person that stays is the one that has to deal with everything.
You don’t figure that part out for a while. When you realize there’s 2 sides to all the crap you’re going through, it helps put things in perspective.
What advice do you have for other married couples going through something similar?
Go to somebody to talk. You need to see a relationship therapist. A man needs to hear the reality of what happens when a woman loses all her hormones.
There are still ways to find intimacy in a relationship, but you need help finding those ways. You need to know that going into it so you can start preparing and shifting.
What helped you through the hardest times?
During those first chemo treatments, I would have my husband just talk to me. He would talk to me about a trip we would take when I was feeling better.
After I found out I didn’t have to be on any more chemo, I looked at my husband one day and said, “I thought we were gonna plan a trip.”
That’s why we planned our first one, and we haven’t stopped. It’s a distraction. It gets us to do all the things we always said we wanted to do. It’s something fun and positive to think about rather than the what ifs.
The other thing is when I feel sorry for myself, I think of how much worse it could be. I would see people in the chemo room who were sicker than me, younger than me, or older people would be talking about hospice.
As soon as you have a story, somebody else somewhere already has a worse one than you. It’s a lot of wasted energy to sit there and feel sorry for yourself when it could be so much worse.
I took care of funeral arrangements and a will, which is something we had never had to think about doing, but now it’s taken care of. I don’t have to worry about it anymore. Dealing with those kinds of things and knowing now that they’re done helps, too.
If my kids had been little and at home, I don’t know what I would’ve done. I was grateful that my kids were all out of the house. They’re all boys, and I think if they had been girls, they would’ve been more consistently involved. Whereas, with boys, they opened the door, asked questions, and then shut the door again.
My heart goes out to women whose kids are younger. I’ve already got to see one of my kids get married. I have a grandkid. I’ve gotten to experience these things that other women might not get the chance to. My heart goes out to them.
Last Christmas was hard because all my kids came home for the holiday. They’re all adults and have their own lives, but it worked out that they all got to be there. I was able to have all 4 boys home.
I did every single tradition we’d ever done, and I did it on purpose because I don’t know for sure.
I was thinking, ‘Am I going to have them all home again? Am I going to feel up for it again? So, I made the most of it.
Sure enough, I heard from each one of them how much they enjoyed it. It was the little things they appreciated so much. Other than that, things are the same. They’re boys. They don’t call their mom as much as they should.
You might feel like you have to do everything really quickly. Everyone tells you you need to get more than one opinion, but you’re so scared that you feel like you have to do it right then.
You don’t have to do it that fast. If I had it to do over again, I would’ve probably taken a little more time. I could’ve probably waited the 8 weeks and gone to the good oncologist first.
I probably had the cancer in my body for years before it finally came out on my breast, so what was another 8 weeks really going to do?
Slow down. You don’t have to rush into decisions. It’s not going to make you die quicker because you wait for an appointment you’re comfortable with.
Whether you do it or someone else can do it for you, take care of it. The more you worry about things, the unhealthier you’re going to be.
Walk for 30 minutes a day, whether you feel like it or not. Things like that. Do anything you can do to keep feeling normal.
Be able to accept the help of all the people that want to help you. Allow people to take things off your plate. If something is bothering you, find a way of taking care of it.
Renee’s Stage 3-4 Relapsed IDC, HER2+, Metastatic Breast Cancer Story
Renee shares her story of stage 3 breast cancer before she relapsed and was staged at 4, or metastatic breast cancer. She details how she was able to get through chemotherapy, a bilateral mastectomy, and radiation.
In her story, Renee also highlights how she parented with cancer, how the diagnosis impacted her marriage, and how she has managed treating her cancer like a chronic illness.
Take it one day at a time. I know they say that, but it’s so true. You are going to be so overwhelmed. I joined Facebook groups at first and had to unfollow them.
There is so much advice out there. You have to decide what’s best for you.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
My kids and I were dancing around. My son accidentally knocked my boob, and it hurt really bad. I went upstairs and looked at it and felt it.
It felt hard, and it felt big. I started crying right away. I suspected it was cancer.
What happened at the doctor?
I called my family doctor and saw her a few days later. All she did was feel it, and she told me it was breast cancer.
She was going to send me for screening, but she was pretty sure. She had seen a lot of breast cancer cases before.
For the first 2 weeks, I wasn’t really okay. I came home and worked from home for a bit. I was a mess. I was terrified.
I was waiting for all the testing. When I got those results, I found out it was stage 3.
Chemotherapy
What was the chemo regimen?
The surgeon said I would probably do chemotherapy first and maybe we could do a lumpectomy, but that depended on how well chemo worked.
I did 4 rounds of AC (Adriamycin & carboplatin) chemo. My first round put me in the hospital. I had an infection in my port. I ended up in the hospital again after my third round. We reduced the dose for my fourth round.
Then I had 4 rounds of Taxol. That wasn’t as bad. I had a lot of bone pain with the first round of that, but the next 3 were okay because they adjusted my meds.
Can you talk about your side effects from chemo?
Days 3 to 6 were the brutal days. With AC, I was nauseous from the start. My nurse told me to eat little meals throughout the day. That really helped, but I wasn’t very hungry, so I had to force myself.
My appetite wasn’t bad on the Taxol. I didn’t have many problems with that.
On Taxol, I lost my eyebrows and eyelashes. I had lost my hair, and then I just looked like an alien.
I’m a really vain person, so I’m shocked at the fact that the hair loss didn’t bother me. I was more concerned about getting the meds in me and getting the cancer gone.
I shaved it when it started falling out. I had cut it short, and I thought it was cute.
It hurt when it was falling out. People had said that, and I wasn’t sure I believed them, but it does hurt. It’s hard to explain, but it was weird and painful.
Surgery
What was the mastectomy like?
After the AC chemo, I had a scan. They knew then and there that it hadn’t shrunk enough to have just a lumpectomy. My surgeon suggested a mastectomy at that point.
I had scheduled the mastectomy. Then, 3 weeks before that, I decided to go ahead with the bilateral mastectomy.
Mastectomy surgery recovery
I was nervous. The only surgery I’d had before was a C-section. I was most nervous about the pain I was going to experience after.
I wasn’t really nervous about losing my breasts so much. They were killing me. I wanted them gone.
I remember the anesthesia hurting. The needle was painful. I don’t remember much of waking up, but I know I wasn’t in pain.
They told my husband that everything went well, and he told me because I was out of it for a while after I woke up.
It was a day surgery. I came home and put my husband’s shirt on. I had bandages around me. Someone had told me not to look when the bandages came off. I was so numb that I wasn’t in any pain.
About 2 weeks later, I had some weird tingling in my nerves around my elbows, but that was it.
I’m squeamish with blood and scars, so when I looked, it was kinda ugly looking, but losing my breasts didn’t really bother me. I wasn’t as traumatized as I know other women have been.
I had the mastectomy at the end of January, and I had radiation in the beginning of April, so I had a nice break.
Radiation and more chemo
I had 25 sessions of radiation. I went every weekday for 5 weeks. Radiation took a while, and then I was just tired.
I had started Herceptin while I was on Taxol, and I continued that. I got that infused every 3 weeks. I stopped for a little bit when I had my surgery. I had 18 infusions in total.
Relapse
Remission to relapse
At my first visit after the surgery, I got the official NED declaration. I was done with treatment on December 31, 2018. When I was told I was NED, I didn’t know if I fully bought into that.
It was really hard to get back to my normal life after that. It felt like nobody really understood me and my emotions. Just because I was NED didn’t mean I wasn’t worried a lot.
When my Herceptin was done, I was having some pains in my chest. I was going to the ER sometimes. It ended up being nothing. They said it was anxiety.
Then 2 months later, I started getting headaches. I thought I was going insane. Turns out, my headaches were something.
How did you find out your cancer was metastatic?
I had headaches constantly for about a month. I was going away on vacation, and I went knowing that I very well could be in metastatic relapse. I just wanted to enjoy myself.
When I got back, I got really dizzy. I called my doctor and went to the after-hours clinic and wasn’t going to be able to get an appointment for about a month.
I worked the system and went to a different hospital in a different town. I presented myself with constant headaches. The doctor saw me and ordered a CT scan. Then he came in and told me.
I think I already knew before I found out. My twin sister, daughter, and mom were there with me.
It wasn’t until I told my son that I started crying. After that, I was a mess for 2 weeks straight.
Treatment plan for the brain mets
I had to get radiation. It was inoperable, so we went the radiation route. I had the mask and everything, but it didn’t scare me.
I must be nuts because I actually thought the mask was kind of nice.
I just thought of it as a spa mask they were putting on my face. It was cool and felt good.
I had 5 treatments. The treatment itself took 5 minutes. It was only 10 to 15 minutes total. It just made me tired. I lost my hair in certain spots.
Then I went on Taxol again. I ended up in the hospital from that for 7 days. One of my sons was sick, and I got it. I didn’t have enough of an immune system to fight it off.
That was a downward spiral. That was a horrible experience. They couldn’t figure out what was wrong. I just kept saying, “My son had a bad cold. I have it, too, and have it worse.”
I did Herceptin and Perjeta after that. I had some bad diarrhea from that, but I was okay. My oncologist was nervous about those drugs, though, because they don’t get through the blood-brain barrier, so he put me on Kadcyla. That’s what I’m currently on.
It’s an infusion I get once every 3 weeks. I’ll be doing this until it stops working. I had some bad neuropathy from it, so I paused for a few months, but I’m back on it. I get extreme fatigue from it, too. My nose drips sometimes, but it’s not constant. That’s pretty much it.
What’s your status now?
I get scans every 2 months. I was stable in December 2019. I was fairly stable in the beginning of March 2020.
There was this one spot, but they’re not worried about it. They think it’s from radiation because it’s still in the tumor area.
Reflections
How are you coping mentally and emotionally?
I went and saw a counselor at the cancer clinic. She helped me process things a lot. I have a palliative care doctor as well who helps me process things. I have Facebook support groups.
I faced my mortality, and it just gets easier to face it.
What is it like to live with cancer as a chronic illness?
I’m really optimistic. I’m quite a positive person. Either that or it’s denial, but I’m just really a positive person. I guess I just have a lot of faith in science.
It helps that I know I still have another great treatment option lined up if this one stops working.
Who knows how much time these treatments might buy me and what we might know then? I have thought about dying.
The hardest part is my children and leaving them, but I’ve done things to prepare. I’ve written them emails just in case. I get angry about it sometimes, but then I think positively a lot.
I’ve done some meditation and classes to learn to deal with stress and anxiety. It’s a daily thing.
Your support system
My husband has been very helpful. He’s taken up a lot of the housework, cooking, and all that. My kids have helped. Maybe not as much as I’d like, but they’ve helped. They’re all teenagers.
I have a twin sister, and she’s amazing. I don’t know how I could’ve gotten through this without her. I also have another sister who is very supportive as well.
We talk every day. What I like about my twin is we talk about normal stuff. We talk about what we’d like to do this summer and shopping, and we make future plans. We talk about the everyday.
My mom comes to all my chemo treatments with me. I love that time with my mom.
Others have offered to come, but I don’t want them to because that’s my time with my mom. I like how she looks after me.
I’ve had some great friends look after me. I’ve lost some friends who’ve distanced themselves. I’ve had some great new friends who have stepped up, too.
We’re a hockey family, so we get a lot of support from other families. We live in the suburbs outside a big city, so a lot of neighborhood families have helped out with meals and things.
Cancer’s impact on your relationship with your husband
It’s so hard. We had just gotten married. Then 2 months later, I was diagnosed. Before that, we were together for 3 or 4 years.
I felt supported, but there was a lot of tension in the house. Then, when the stage 4 diagnosis came along, we really connected. It was like nothing else mattered. We realized what was important.
A lot of the lack of communication was me. It took me going to a counselor to find ways to express how I was feeling. I didn’t understand his side of things.
I was like, ‘I’m the one with cancer,’ but then I realized that it was scary for him, too.
I felt like I failed them. Not because I felt like it was my fault that I got sick, but because I couldn’t do all the things I wanted to do for them that I normally could do. I felt tired and weak, and then I felt like a failure.
In happy moments, I’d be happy for them and then be so tired. In struggles, I wasn’t as available to them. I felt like they stopped telling me as much.
What advice do you have for someone who has just been diagnosed?
Take it one day at a time. I know they say that, but it’s so true. You are going to be so overwhelmed. I joined Facebook groups at first and had to unfollow them.
There is so much advice out there. You have to decide what’s best for you.
If you have a good oncologist, trust in them, but also be your own advocate. If you’re going to do your own research, make sure it’s not Dr. Google research. You’ll learn through the experience.
Try to see the positive. Maybe it won’t be every day, but find it. I’m not saying, “I’m so glad I had cancer.” I’m not. Practice gratitude, though, because having a negative attitude is not going to help you.
In her story, Stephanie also highlights the importance of patient self-advocacy, guidance for couples going through cancer, and how cancer changed her view of cannabidiol (CBD).
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Know that this is survivable. Breast cancer is one of the most survivable cancers.
Make sure you eat and you rest. Those are the 2 things that you’re not going to want to do because of the drugs you’re taking, but you need food, and you need rest.
You need to do everything in your power to make yourself be able to do those 2 things. That’s how your body is going to heal.
Stephanie J.
Diagnosis
Describe the lump you found
In spring, I was giving myself a self breast exam. They say you’re supposed to do them every month, but I would say I did them every 6 months or whenever I would think about it.
It was right on the top on my left breast above the nipple area. I could touch it. When it first came in, it was itty bitty. Your breasts swell because you have cycles, and when that happened, it seemed to go away.
Over the summer, though, it got to be about 3 cm. It was pretty aggressive. Triple negative is known for being pretty aggressive.
When did you go to the doctor?
I didn’t go to the doctor until August. When it was obvious it got bigger and wasn’t going away any time soon, I decided I should get it checked out.
I was self-employed, and I didn’t have insurance. I thought, “If it’ll go away, fine.”
I started researching options on how to get it checked out. I pretty much just wanted to confirm what I already thought it was at that point.
What resources did you find for getting care while uninsured?
In Dallas, we have Baylor Hospital. They have a big cancer center. I’ve always been a researcher, so I started going to the library at the hospital and asking around.
I got referred to the Bridge Breast Network. They’re a group that helps uninsured and underinsured women of Dallas and Tarrant county get diagnoses. They got me a mammogram and biopsy.
How did you get the diagnosis?
It wasn’t a terribly long process. First, it was the mammogram. They noticed the lump and did the ultrasound and needle biopsy that day.
That was weird because they numb you. I was watching the screen and the needle going into the tumor, but I didn’t feel anything.
It wasn’t as scary as I thought it was. It wasn’t bad. It took about a week to hear back on the results.
I was working part-time at a taco joint and bar. This lady came in, and she was bald and dressed in pink head to toe. She was there to see her grandson play a show next door.
I told her I just had my biopsy done, and she was so sweet. She said, “If it happens, just know that I’m almost done, and it’s survivable.” She took my info and kept up with me for a while. That helped me a lot.
My doctor called me about a week later. I feel bad for medical professionals because they have to deliver bad news all the time.
She called me and said, ‘We got your results back. It is cancer.’
It’s almost like a punch in the stomach. You know it’s coming, or you at least have a feeling that it might be coming, and you prepare yourself. Then you hear it, and it still took my breath away.
I didn’t know what I was going to do with this diagnosis since I didn’t have any insurance. The doctors called the Bridge as well and let them know the results.
They called me up and invited me in. They gave me a treatment packet. They told me all the doctors they had set me up with. They really were instrumental in me still being here.
What was your treatment plan?
Because of my staging and grading, I was given a 23% chance of living to see 5 years. Here I am 10 years later, still kicking.
Because I was triple negative, my doctor said if I responded to chemo, things would look pretty good, but if I didn’t and it metastasized, there wasn’t going to really be anything they could do.
I was going to do 4 months of chemo, then a double mastectomy with expanders and reconstruction.
They did a mouth swab for genetic testing and found out I was BRCA1+, so they wanted to clean house with an oophorectomy and hysterectomy after the mastectomy, too. They were pretty thorough. My final reconstruction surgery was about a year after my diagnosis.
Chemotherapy
Can you talk about the chemotherapy?
Chemo is the one thing everybody dreads. It doesn’t look pleasant. I wasn’t excited about it at all. Being the researcher I am, I looked into everything. I had 2 stages of chemo. The first was Adriamycin and Cytoxan. The second half was Taxol. I did 4 of each.
I researched how to endure chemotherapy. Of course, an illegal way to endure chemo is cannabis. I had never really spent much time with it, so I talked to friends that knew about it. I asked my oncologist about it, and he said he couldn’t tell me to do it because of legal reasons, but he also didn’t tell me not to use it.
I was 1 of a few patients he had on chemo at the same time. I was 1 of 2 that was using cannabis, and we were the only ones that actually gained weight on chemo.
I had infusions every other Tuesday. They had to hit me pretty hard. I was really drugged up on the first infusion day. They gave me Benadryl, steroids, and anxiety medicine. I hated the steroids. I felt like the whole apartment was spinning that first night after getting infused.
The AC wasn’t fun. I had leg muscle pain with the Taxol. I also experienced some neuropathy. The skin on my feet and fingers was tingly and painful. The Taxol was probably harder.
Both kinds sucked, but the Taxol was harder. They also gave me Neulasta shots after chemo to make my body produce white blood cells. That made every bone in my body ache.
It took about a week for me to start to feel better. Chemo side effects are cumulative, though, so the further along in the process, the more everything hits you and the harder it is to recover.
My husband is a tattoo artist, so he works nights. He came home one night, and I was lying on the floor underneath the coffee table gripping the legs of it because I was in so much pain. I don’t like pain meds and opioids or anything like that.
That was the one time I had to call and ask my doctor for something. I was lying on the floor, crying, for a while until he got home.
That was the one time I thought, ‘This is going to kill me. I’m not going to survive this.’
What advice do you have for someone going through chemo?
I’m a big proponent of cannabis and CBD if you’re in a legal state. I don’t want to recommend that you break the law, but I will say I can’t imagine going through chemo without it. Even with it, it was really difficult, but it helped a ton.
Always talk to your doctor. They’re a part of your team. Don’t keep things from them. Know that this is survivable. Breast cancer is one of the most survivable cancers.
Make sure you eat and you rest. Those are the 2 things that you’re not going to want to do because of the drugs you’re taking, but you need food and you need rest.
You need to do everything in your power to make yourself be able to do those 2 things. That’s how your body is going to heal.
We did a PET scan before I started. I did a few CTs throughout. They would do ultrasounds here and there, but the big scan was after chemo. At the end, they did another PET scan, and that’s when I found out I was in remission.
I was glad when he told me, but I knew I still had to get through the next 5 years. Then 2 weeks after that, I did my double mastectomy.
Surgeries
What was the double mastectomy like?
Prep beforehand was really about making sure my body was strong enough and could handle surgery. I drank a lot of protein shakes and really watched my diet to make sure I could take the surgery.
The day of the surgery, we got there at like 5 a.m. It was an 8-hour surgery, so it was a long day. I was out, so I didn’t know it, but it took a while.
It was like 2 surgeries because the breast surgeon took everything out, and then the plastic surgeon came in and put everything back together with the implants.
Waking up from surgery was one of the most painful experiences of my life. I’ve had 2 sons naturally, and getting my breasts removed was on par with that.
Waking up from surgery was terrible. They have to split the chest muscle, so it was rough. That’s what really tore me up, I think.
I was in the hospital for a few days, went home, and rested and recovered. I was nervous about being able to handle the recovery. I had 2 drains coming out of me. I had to learn how to take care of those. I didn’t want to cause any infections.
What were the oophorectomy and hysterectomy like?
They did both at the same time. The gynecological oncologist who did the surgery was in the other room and was controlling a robot. I don’t know how to describe it other than it’s just really cool science stuff. I was only in surgery for 3 or 4 hours.
They inflate you, and they make tiny incisions in the bikini area. Now I can hardly see my scars. That surgery recovery wasn’t nearly as bad as the double mastectomy. I didn’t really have a lot of pain or anything. I had gas built up from being inflated. That’s not so fun, but that’s about it.
I couldn’t drive for a while after the hysterectomy. It took about 6 weeks before I was cleared to drive.
What was the reconstruction surgery like?
Throughout my treatment, I was getting my breast expanders filled. When they filled the expander, they would take a magnet and it sticks to a metal valve. When it sticks, that’s how they know where to add the fluid. They do a little at a time, so it wasn’t painful really.
The reconstruction surgery was a nice little day surgery. I felt better after that surgery because the expanders are heavier than the implants.
I felt lighter. I just had to live in a sports bra for a while. It was no big deal.
Quality of Life
You’re thinking of getting a mastectomy tattoo
I haven’t done it yet, but we’re planning a mastectomy tattoo. My husband is going to do it for me.
He was horrified by the apparatus in the plastic surgeon’s office that they use to tattoo nipples. He takes his work very seriously.
We’ve been trying to decide on a design. A tattoo artist is going to be good at realism, so I’m sure he could do a 3D nipple, and we might go with that.
But while you’re there, why not add a cool design? I’m a creative professional, and I’m pretty tattooed already, so I’m working on something a little more involved.
We’re thinking of doing some filigree design with hearts. My scars travel from nipple to pit on each side, so we might do some sort of vine with flowers following that.
You can tattoo over scars. I don’t have a lot of feeling near my scar, so it’d probably be the easiest tattoo I’ve ever gotten.
My husband is just going to bring his stuff home, and we’ll do it on the house.
During the process of going through cancer, you just lose all autonomy. You’re no longer your own person for a little while. Knowledge is power.
Sometimes we get scared, and we don’t want to know, but it’s best to be a student of the disease. Learn everything you can and be your own best advocate.
All of my doctors were very open and communicative. They saw early on that I asked a lot of questions and knew my stuff, and I think they appreciated that.
I asked them about hair loss, and my doctor said it would happen on day 14. I thought that meant I was going to wake up on day 14 and have a ring of hair on my pillow.
It wasn’t like that at all. I buzzed my hair in preparation. I woke up, and I still felt my fuzz.
I went to run some errands with my friend. We were in the bank parking lot, and I went to scratch my head, and it was all full of hair. We both looked at each other, looked at my hand, looked at each other, and started crying.
Now I look sick. Now people are going to know I’m a cancer patient. That was harder for me. Having no hair meant that people would know I had cancer, and that bothered me because I hate the sympathetic head tilt.
Eventually, all my hair fell out all over my body. Something people may not realize this, but even your nose hairs fall out, so your nose is constantly running. I only grew about two-thirds of it back, so I always have tissue on me.
If you can, buzz your hair. It feels like it would be more traumatic if it was long and coming out in big clumps than if you just go ahead and buzz it and start getting used to the short hair or no hair.
Plus, when the fuzz comes out, it’s a little easier to handle than I imagine it would be if my hair was its normal length.
It usually comes out in patches, so if it’s buzzed, it comes out easier. After the fuzz started coming out, I went ahead and shaved it. I went through chemo in winter, so it made it really easy to have knit caps on all the time. If not, I would just rock the bald head.
How did the cancer affect your relationship with your husband?
It’s funny because we were just friends when I got diagnosed. We hung out with the same people. He would come around and check on me when I worked at that bar. He’d come sit, but I’m clueless, so I never got it. I don’t do signals well.
Then I got diagnosed. A week after I got the diagnosis, I posted on Facebook that I wanted to have a nice night out before treatment started. He was like, “I’m down. Let’s do it!” I’m still clueless at this point, but I of course agreed.
We ate sushi and went to a concert. At one point, the band was taking a break, and there was just overhead music playing. He leaned over and said, “I want to be with you through everything.” I was like, “I don’t even know what everything means.” He just said it again more emphatically.
We’re about to have our 5th wedding anniversary now. He never missed an appointment or surgery. He’d work until 2 or 3 in the morning and have me to pre-op by 5 a.m.
He would tell me I was beautiful even when I had drains and no hair. He’s just a good dude.
Do you have advice for other couples going through cancer?
The human brain is wired to be scared of things because we want to survive. In order to make a relationship work, you have to push through fear to get to the love.
People often get this mixed up: the opposite of love isn’t hate. The opposite of love is fear.
Thankfully, my husband pushed through his fear, and we’ve made it through to the other side now.
As a caregiver, that’s good to keep in mind. It’s okay to be scared, but you just have to get through it.
You’re on a journey together. It’s okay to cry together and experience it together. The cancer patient is the patient, but the caregiver has feelings, too. If you need to go to some type of counseling to get through it, do it. Therapy works.
Always be patient. Understand that the both of you are going through it. Try not to isolate yourselves. Be together.
They were both in high school. My younger one was a freshman. I just thought, “I want to live long enough to see them both graduate high school.”
I’m a matter-of-fact kind of girl. I just tell the truth and deal with it. So, I met with them and their dad. I talked to their dad first and told him we needed to tell them together. We sat them down and just told them.
They had just lost their grandfather to throat cancer a few years before this, so naturally, they were both terrified. I just let them know that I was going to put in my best effort.
That was hard to know they were scared I was going to die. Deep down, I was scared of leaving my children, but I didn’t say that to them obviously.
Telling your kids is an emotional time. I’m grateful they were old enough to understand and take care of themselves if they needed to.
I imagine it’s incredibly tough for mothers with younger children, who can’t understand. I knew if I didn’t make it for some reason, they would at least be able to comprehend it.
The support system I had is another big reason I’m still here. My husband, my friends, and women I met through the Bridge Network. They also had therapy.
Baylor offers things like that. That’s a great thing. People in medicine are realizing there’s a whole body wellness. The mind and the body are connected.
Having mental and emotional support was really instrumental in my recovery.
I had friends come over with food, and we would watch bad TV together. Another friend came over to teach me how to draw my eyebrows on. Little things like that got me through the bad stuff.
How has your experience changed the way you view CBD
I work for an ad agency, and we do a lot of work with CBD and marijuana companies. It’s really nice to be on this side as a Gen X person. It’s neat to be able to put my experience out there and try to change the stigma.
I had a friend who was sick, and she couldn’t take pain meds very well. I brought her some CBD ointments and things so she could at least try to rest.
Being able to take my knowledge and skill set to help other people maybe find a product to help them get through cancer is amazing.
After my cancer, that’s when I really started wanting to be in this space. I was a DARE-generation kid, so it was a shift for me.
To this day, it helps with my chemo-induced IBS, hot flashes, and neuropathy.
For me, it was living every day with intent. I don’t stress about the things I can’t control as much anymore. I can only control how I react to things.
Also, I’ve got new fuel for my fire to do things I want to do. I want to photograph all the state parks in Texas before I die. Things like that. I try to go for things more.
I also care for myself more than I used to. Self-care and taking time to make sure I’m rested used to be on the back burner a bit, but it’s not now.
I like to read, so I try to make sure I dedicate more time for that. I love to be in nature, so 1 or 2 weekends a month, I go to a state park. Self-care is subjective, so you get to choose what feeds your soul.
Time with my family and time doing things I enjoy are what’s important to me, but self-care is about what’s important to you.
What is your advice for someone who has just been diagnosed?
Research. Communicate with all of your medical professionals. Don’t be afraid to venture into spaces that have been scientifically proven to help you. Knowledge is power. I think research is the number one thing you can do for yourself once you’ve been diagnosed.
Genoa shares her stage 3 HER2+ breast cancer story and describes her treatment, including chemotherapy, why she chose a lumpectomy over a mastectomy, and radiation.
In her story, Genoa also highlights many important quality-of-life issues, like dealing with the hair loss, working through treatment, and being a patient self-advocate.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I just assumed that that diagnosis meant the end of life as I knew it, and I’m here to tell you that it does not, and it did not.
Cancer is no longer the death sentence I used to think it was growing up or what I feared it might be.
Genoa M.
Diagnosis & Tests
What was your diagnosis?
I had stage 3, HER2+, which is an estrogen-positive breast cancer. It was aggressive.
I had been feeding it. Basically, I had had an estrogen-patch that I attached to my butt every 2 weeks to help me through menopause. All that had happened was I had accelerated [it].
Through medical intervention trying to help me manage my menopausal symptoms and re-balance my hormones, I had accelerated something in my breast that was cancerous.
The best description I ever had was from a nurse practitioner [who] drew me a diagram on the sheet that they cover the examination bed with.
She drew me a diagram and said, ‘Here are the ducts in your breast. Really, what’s going on is your cells are having a party outside of the ducts, and we need to get them back into the ductwork.’
You are having an outrageous party in your breast outside of the ductwork, and that’s why you have a tumor. That made the most sense to me.
How did you get diagnosed?
My life at the time was simply that I was living in a city I’d always wanted to live in with a husband I’d always wanted to be with. I had a stepson who had made it to university, and I was working in my career.
Despite all these wonderful things, I felt nauseous.
I think as women we know that nausea is there for a reason. I for sure knew I wasn’t pregnant because I had had a hysterectomy, I was older in life, and I was in menopause.
If I felt nauseous, that meant something was really wrong. When something’s wrong, you intuitively know to go get some help. That’s how I knew something was off.
I was due for my annual mammogram, and I went to see my OB-GYN. As luck would have it — or maybe the universe was taking care of me — I had hit my deductible on my annual health insurance.
My OB-GYN, in addition to requesting my mammogram, also said, “Why don’t you have an MRI? You’ve had a history of breast cancer in your family, so let’s do an MRI as a baseline.”
I thought that was a fantastic idea. I also let her know I felt nauseated. She’s like, “I don’t know why you’d feel nauseous.” There was absolutely no reason at all to be feeling icky. I just felt icky, so I scheduled my mammogram.
Describe the MRI
It was incredible. I actually managed to have my MRI scheduled on the same day. I don’t know that you typically get both the appointments that you want on the same day, but that’s how it worked out for me.
I do think there was something very special going on because by the time I got to my mammogram in the afternoon, the results of my MRI had already gone through. They did a very different mammogram because they knew exactly where to go.
The fact that it wasn’t just a technician doing my diagnostic mammogram with an ultrasound — it was a radiology doctor — I knew something wasn’t good.
I knew something was wrong because I felt nauseous, so it was almost as if, “Okay, they’re taking me seriously. They’re not just saying we don’t know why you feel nauseous. They’re looking for something.”
They were looking for something on the right breast. They let me re-gown and sit up. Then they told me they could see a tumor-like mass, and they would need to do a biopsy the next morning.
All I remember was the doctor telling me they’d found the mass, and then the technician just gently rubbed my back while I breathed.
All I wanted to do was put my street clothes back on, go home, and find my husband.
What were the next steps?
(In 2 days: MRI → mammogram → breast biospy)
I consider myself so fortunate to be able to get that much help that quickly. Once I knew the biopsy [was] the next morning, they were already talking to me about getting a surgeon.
I was thinking, “You can take a tumor out, but what about the rest? How far has it gone?” All I could remember from my mother’s cancer — she also had breast cancer in another country a long, long time ago — they had not checked the lymph node.
Her tumor was in her breast, but the lymph node also had cancer cells. The lymph node is the gateway to the rest of the body, so I was thinking you must check the lymph node. Don’t just do a biopsy on the tumor itself.
I won’t say they fully dismissed it, but they were very much, ‘If you need chemotherapy and your tumor is malignant, then we’re going to just blitz everything.’
That wasn’t good enough for me because I wanted to know — I was almost obsessed with knowing — has my cancer spread?
They took the biopsy and put a clip in to tell where the tumor was. The clip was very important because the surgeon then went looking for the clip in order to take the tumor out.
Basically in 48 hours, I’d had an MRI, a diagnostic mammogram, a biopsy, then they sent me home for the weekend. You needed at least 3 days to get results.
Biopsy and scan results
We waited it out. It was everything you could imagine in a long weekend of not knowing and imagining everything in between.
Then I got the call on the Tuesday to say it definitely was cancer and to come back in. They would walk me through my diagnosis.
We went back in, and they actually did a wonderful job of explaining to me what my full diagnosis was [and] giving me a lot of information about the pathology from the biopsy. It was late September. I actually started chemo in October. We went really fast.
What is a clip?
The clip is a marker. When you have a biopsy, they’re already in your breast. They’ve already taken a sample of the tumor and the growth.
Before they take the needle out, they put a tiny marker. It’s like a metal clip. and they put it in there to say, “This is the place. This is where the trouble is.”
For any ultrasound or any surgery you have afterwards, that’s how they go looking for that. That’s how they map it all out.
Describe the breast biopsy
That actually didn’t hurt too much. It was once they put the local anesthetic in the tissue area. I was fine until they took a sample. When cancer is in a cellular form, everything is angry and upset, and the cellularity is compromised.
When they actually took the sample, I did feel the pinch. I felt a sharp pinch, and then it withdrew. I know I reacted, and they said, “Don’t worry. It hurts because everything is wrong, basically. We hit it. The fact that you felt it means we got a target, and we’re not going to do anything else.”
How did you decide between a lumpectomy and mastectomy?
There’s some big information here I do understand and would love to share, because you have the option of breast conservation if you want it [or] if you are really anxious.
My aunt did this after her chemotherapy because of my late mother. She decided to have a mastectomy just as a prevention.
She did the Angelina Jolie. Take it away. That for her was sanity-given, and they offered that to me. If I felt that would give me my best emotional chance of recovery, they would have taken the breast off and then worked on reconstruction.
The good news is for all women that they now know enough about how breast cancer behaves so that your chances of survivorship are just the same if you have a lumpectomy or a mastectomy.
It’s more about do you feel better not having the breast there? I actually felt better having the breast there. I chose breast conservation and a lumpectomy.
How did you choose hospitals?
I went to my usual OB-GYN for the mammogram. Because I was already getting care there, that’s where they did my MRI and breast biopsy. For chemo, I changed to another hospital because the chemistry between me and the first medical team was not what I wanted.
Then they tried to set me up with an oncologist and a surgeon within their own system. I had appointments with both the oncologist and surgeon that same week, so they definitely moved quickly.
The problem was I didn’t feel that I was with the right oncologist and surgeon. It wasn’t that they were incompetent in any way. Their style wasn’t working for me, if that makes sense.
I’m a very visual person and an emotional person, so their body language wasn’t feeling good to me. I didn’t know that I could develop a relationship with them so I could tell them how I really felt or where my concerns were.
Even their offices made me feel depressed and insecure. I kept looking at where they would give me my chemo and thinking, “Well, I’m going to be so sad sitting in that chair in this depressing room doing something I don’t want to do anyway.”
When your gut’s telling you that nothing’s coming together, you should probably listen to it.
Chemotherapy & Side Effects
How did you determine treatment?
What they wanted to do was shrink the tumor first, then remove it surgically.
Their recommendation was go through chemo, try and get the best response we can, and then it can be significantly reduced. Then we’ll go in and take it out, and you’ll have radiation.
Describe the chemo regimen
It was neoadjuvant chemotherapy, including taxanes (Taxotere), carboplatin, and trastuzumab (Herceptin).
How did chemo go?
Your first infusion is your staging infusion, and it takes pretty much the whole day.
After that they can go quicker and speed up. About halfway through, I was having the 4 bags over 45 minutes to almost 30 minutes. They were speeding me up and speeding me up. The side effects were the same, but you didn’t have to stay there as long.
The best advice I had about getting through the day of chemo — and it makes total sense if you think about it — just get up and move.
Don’t just sit there and let all the meds flood through your system. The best thing you can do is move around and get them to move around.
I found I was able to disperse a lot of the nausea and a little bit of my anxiety, too. Just get everything. The more I drank, the more I flushed. The more I moved, the more things moved around me. I definitely felt better for it.
What were the chemo side effects?
nausea
fatigue
constipation
diarrhea
Describe the side effect cycle
Days 4 and 5 were the toughest days. If you knew they were coming, you kind of just built everything around it. Days 1, 2, and 3 I just always felt floaty and drugged up.
Days 4 and 5 were the hardest: nausea or just energy, emotions. [It] got better on day 6 and got better on day 7. It was just the drugs working their way through my system.
Week 2 was always the rebuild. You’re coming back off. Week 3 was, “I’m actually feeling pretty good.” Then you go right back to week 1. I had constipation, diarrhea, so bizarrely both, and then the nausea.
The really good learning from all of that is take your side effects straight back to your oncologist and team, because they can adjust your dosages.
What made you feel better?
You don’t want to exercise. With all your being, the last thing you want to do is exercise or move, but you must because you will feel better.
I’m not an athlete by any means, but I could swim and could walk. As long as I moved and tried to do those things, even though I felt crappy, I would always feel better afterwards.
The other thing I learned was however nauseous I felt and however much I didn’t want to eat, if I ate through my nausea, I’d feel better, too. It really is true.
Then fluids. I’ve never been someone that wants to have 8 glasses of water a day. I still don’t want to have 8 glasses of water a day, but I would just take my big 1.5 liter bottles and keep refilling them.
It just made so much sense to me. I wanted to flush all the impurities out. The only way to do that was to drink a lot of water.
Radiation Therapy
Heading into radiation
Happy it was less than I thought it’d be. It is once a day every day for the whole month of May, except weekends.
Negotiating less radiation
My radiation [was] shorter than I feared. Again, you can negotiate. Your doctor will tell you that you need to have a standard. They’re supposed to tell you, and they will, that the standard radiation is 5 weeks plus a booster week, so 6 weeks of radiation.
The reason they tell you it’s a full 6 weeks is because there are 15 years of research attached to that being the best protocol. However, there are 5 years of research to say that 3 weeks and a booster week yields the same results.
They’re required to tell you that the standard is 6. Going to a hospital every day for 6 weeks is overwhelming.
Radiation, just like chemo, has side effects and other issues. It fixes 1 problem but maybe creates others.
When I really dug in and really pushed, turns out they’re very comfortable with less, as long as they’ve fully expressed to you it’s your choice.
The moral of that story is you are in charge of your health, and you have the right to ask and the right to negotiate your own treatment plan.
I did not understand my relationship with my hair until I was diagnosed. I think the times I broke down and cried over my diagnosis were triggered because I knew my hair was going.
Doing this interview without a wig on is one of my first attempts to be braver about not wearing a wig. I wanted to choose this opportunity to get braver and get more okay with not having hair, or at least not having the hair I would’ve liked to have.
I did not understand how much my identity was wrapped up in being able to brush my hair. When you start losing it, it’s so traumatic. You know it’s coming, and I think you resist — well, I did.
I fought against it. But every time you touch your hair and there’s a chunk, or roll over on your pillow and leave hair on one side of your pillow, you realize that’s actually more distressing.
I have a really amazing hairdresser, and I knew it was time to take all my hair off. I also had gone and gotten a wig, the kind of wig you needed cut.
I called my hairdresser, and I’m like, “Okay, Ed, I’m coming in. We have 2 missions. 1, I need a buzz cut. 2, I need you to cut my wig into something that looks like me.”
He did both of those things. He was so supportive and so kind. It was liberating having what was left of my hair cut off. It was definitely more distressing leaving it there.
I don’t know that every woman feels this way, but I kind of needed to just get it over with.
All of a sudden, you lose your hair after the second chemo. It’s almost like clockwork. It was after the second chemo. I just made it through Thanksgiving mostly with hair.
I was about 8 weeks in. All of a sudden, I wasn’t worried about shedding. I had a bob cut to my chin. If every time I turned around I was losing hair, it was so distressing.
It was liberating to not have that emotion on top of, “I’ve got a tumor. I need to deal with this because I really like life, and I don’t want this to rob me of anything.”
Did you wear a wig?
Yes. I hate wearing the wig. 2 weeks post-chemo, it looked like a shadow on my head, but there were tiny little hairs growing.
Today, knowing that you were coming and knowing that I wanted to show up just me and not me with a wig, I looked in the mirror and I’m like, “Could I see myself going into the office without a wig? Stuff’s happening.”
I don’t think I’m quite there, but I’m almost there. I am so looking forward to when I can go, “Yeah, I’m good to go in.” I’m closer. Hopefully, really close.
Also, I’ve realized the wig makes other people feel more comfortable. That took pressure off me, but I hate that damn wig.
There was this amazing quote I saw on the front page of a magazine at Stanford, “Don’t let cancer be the most interesting thing about you.”
I was like that was for me. If I lead with it or let other people lead with it, then I’ve lost myself utterly.
Wearing a wig has helped everybody else. Here I am for a meeting, here I am sending an email, and regular things happen.
Most people would always want to ask me how I was, and I’m like, “Honestly, I’m fine and just happy to be here. Thank you, but let’s get going and not let it be all about my cancer.” I had other comments about things.
Why did you decide against cold caps?
There were 2 things. 1, they didn’t guarantee effectivity. Once I understood that they needed to be changed every 30 minutes for 24 hours, they’re really, really cold, and the pressure is on the person with you to keep changing. You rent a special ice-cold thing that keeps the next one you’re supposed to put on cold.
I just thought, “I’m not going to put any more pressure on myself or my husband to go through changing those, and if they don’t guarantee that you’re not going to lose your hair then, this is already hard enough and they’re expensive. So screw it.”
Quality of Life
Did you work through treatment?
The crazy thing for me was — and this might be other people’s reality — I needed to not go on sick leave. I actually kept working.
The weeks of chemo, I was lucky enough to work from home, and I pretty much dragged myself through my meetings and my calls. I’d put a hat on and dial in on a Google hangout.
I could do my email from my couch if I needed to, but I didn’t really distract myself through TV or reading. I just tried to move and tried to show up for work and keep it moving.
I think the economic reality for a lot of people is earning 70% of your income by going on sick leave, if you’re lucky enough even to have sick leave, is such a hit to your budget.
It doesn’t help you get better knowing that your finances are compromised. All I knew was I didn’t need that added pressure for my family.
I remember my mom and my aunt having chemo, and they were in positions where they really didn’t have careers. I just thought, ‘Well, I’m in a very resource-rich city, and medicine’s come a long way.’
I had a very supportive family, too. I had a very supportive team. My management were not very supportive, but my team was supportive.
I knew every day that I made it into the office, they would make me feel so welcome. They would encourage me and motivate me, and they did that.
I also learned to tell certain people what I was going through because I knew they were very motivational and very warm, loving people.
I picked certain people who didn’t necessarily work on my team but I would see as I walked into the office or in elevators. I let them know (about the cancer) because I’m a private person.
They would give me a hug and go, “Genoa, you’re here!” I’m like, “I know!” Knowing that I would see those people helped.
What do you wish you had known before the diagnosis?
The thing I wished I had known but I know now is that cancer is no longer a death sentence.
For any woman watching this and has been diagnosed with breast cancer, you particularly need to know that there has been so much research and so much medical progression in our type of cancer that you are already on a winning team.
Because my mother had died of breast cancer 17 years ago and my aunt struggled with it, I assumed my struggle was going to be the same, but no. It’s come a long way, and it is by no means going to kill me.
The minute I accepted it wasn’t going to kill me, I was like, “Right, I just want to get this dealt with so I can move on and enjoy my life.” That’s what I wish I had known, because I spent a lot of time freaking out.
Integrative and Eastern medicine
I did not come up with this, so I take no credit for it, but the best thing I did was go see a Chinese medical doctor who specializes in cancer and [is] an acupuncturist.
The 2 disciplines together with my chemo, I actually think I’m coming out of this probably a more whole person incredibly.
My hormones are balanced, and I feel so good about life. Do not just take a traditional approach to your treatment.
What surprised me the most was where the best support came from. It came from people I didn’t expect and I didn’t anticipate telling. But I’m so glad I did, because their support and their help.
Don’t assume anything going into this. Be open to love and support coming from all sorts of places, all sorts of unexpected places. It will surprise you how uplifting it can be.
I just took the approach, “These are the side effects. They were on the sheet they gave me for each of the drugs, so check that box.” It wasn’t until my second round when the nurse practitioner’s like, “You know you don’t have to suffer quite this much?”
I was like, “Okay, that would be nice. Is that allowed?” Silly me, I should have made a big fuss after the first round and not waited to see if it’s as bad the second round.
When the dosages were adjusted for me, it got more tolerable, then just stayed consistently the same. Nothing really changed.
You are in charge of your treatment. Ask. They can always make changes, and you’re not being a wimp. I think there’s this thing about chemo — it’s meant to be awful, because cancer is awful.
If it’s awful and you get through it, then you’re definitely going to be cured. It doesn’t have to be awful, and you don’t have to fight through it. You can still be cured. It gets a really bad rap is what I’ve learned.
Doreen’s Stage 2A IDC Triple-Positive Breast Cancer Story
Doreen shares her stage 2A triple-positive breast cancer story, diagnosed after she found a lump in her left breast. She details undergoing and recovering from TCHP chemotherapy, a lumpectomy, and radiation therapy.
In her story, Doreen also highlights how she navigated life after the breast cancer diagnosis, losing her hair, how she managed work through treatment, and the importance of keeping a sense of humor.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Be open to anything that comes to you, I think, because during this process you’ll meet a lot of people that you never thought you’d meet and have conversations you never thought you’d have.
I think you need to let those happen. Know that you’ll get through it.
Doreen D.
Diagnosis & Tests
How did you get diagnosed?
I’m not quite sure whether they were symptoms or not in terms of what I was looking for, but 2 years before diagnosis, I started to gain weight and gained almost 20 pounds.
I had gone to my doctor and mentioned to her about it. I’m pretty active. I work out anywhere from 5 to 6 times a week. I don’t eat bad. I don’t have any of those big issues, so I’d gone to her and started talking to her about that.
Her response to me was that I was just fat and if she had a nickel for every person that came in there and told her that they had thyroid disease, she’d be rich.
My response back at that point was I never mentioned thyroid, nor did I mention anything that had to do with it. I mentioned more that I was trying to figure out what was going on.
Eventually, I found a doctor who’s a little more alternative and deals with athletes. We did a bunch of blood tests, and he mentioned to me at one point that some of my markers were coming back looking possibly like cancer, but he couldn’t be sure or couldn’t tell what it would be or what that was like. Of course, that’s in the back of my head.
I was away traveling on a work trip, taking a shower, and found a lump on my breast that was kind of shattering in terms of just the fear that went through me, not knowing what it was.
I started calling doctors and the mammogram center, trying to figure out what I need to do. Trying to get my gynecologist to order the right test for me, and after maybe 5, 6, 7 different phone calls, finally got an order for a test, which ended up being the wrong one.
I had to do a little background research and find somebody else who would actually listen to me, pay attention, and order some tests for me. That ended up being another 7 days from then.
By the time they actually did the right mammogram and ultrasound, the next day I was sent for a core biopsy. Through the core biopsy, they had found something that looked aggressive and scary. They checked my lymph nodes.
At that point, I knew I had cancer and wasn’t quite sure what stage it was or how bad it was. All I knew at this point was it wasn’t in my lymph nodes, and nobody’s actually telling me I had cancer.
From that, they had started to put down on the calendar my surgeon consult, my oncologist consult, and then when they’d give me my diagnosis consult.
What were you thinking or feeling before the official diagnosis?
Nobody’s really saying I have cancer yet.
There’s no reason they would give me a surgery consult first and foremost, or an oncology appointment. The next day I was flying to Italy for one of my really good friend’s weddings.
My close friend who was staying with me knew I was going for an appointment, and I mentioned that I thought I might have cancer. She’s like, “No, you should be good. It’s probably not cancer,” She pretty much pretended like she didn’t hear that. I’m like, “No, it’s cancer.”
I got a lot of that kind of feedback instantaneously, but it was something that was in my head and something I couldn’t really talk about. I didn’t want to ruin my friend’s wedding.
The hope was if this was it, I would only have to do lumpectomy and radiation. I had all these things going through my head at that time that I tried to wipe out of it.
I think I was lucky that I was somewhere else in terms of a foreign country that I’d been to before. I could just mentally keep myself busy.
I landed, and the next day I had an appointment set up with what’s called a patient advocate at [the medical center]. She’s a breast cancer survivor, so I brought a friend with me because I knew it was probably going to be messed up.
We went into the room, there was a little bit of small talk, and I said, “Let’s not do that; let’s get down to the results of this.” I’m a little bit stressed out, to say the least.
She gave me the diagnosis. Of course, I cried. My friend cried. We started to talk about what the next steps were.
I already had my surgery consult. They definitely told me the stages, and I had no idea what that meant or how bad it was. When you look at the scale of things 1 through 4, I was a 2A, so in my mind it was better than 2B.
It had no correlation to anything, but that’s how I looked at it. I was just like, “Okay, does that mean chemo?” Then the chemo thing came out. I’m like, “I need to do chemo, I need to do this, and I need to do that.”
At that point, my advocate is like, ‘Take one day at a time. There’s a lot that’s going to come at you.’ You don’t think about it in that way. You don’t realize the enormity of what’s to come and hit you.
That’s where we sat, and the next stage after that was my surgery consult. So I think that was it. It might have been an MRI.
I can’t quite remember, but either way, there was one or the other that happened. Within that week, I had a surgery consult, I had an MRI, an echocardiogram, I had my port put in, and I met with my regular oncologist.
It was just things coming at me at all speeds in 5 days.
Describe the breast biopsy
Hurt like hell. It’s through a needle, a hollow needle almost. It’s long but not thick. They used local anesthesia.
It took about a half hour at the most from beginning to end. My mass was right above my nipple in the right quadrant, and you could feel it. It was relatively big. It was 2 to 3 centimeters.
I think there were 3 different things that they took out, and the woman that did it told me about what she was going to do. They take out the pieces of the inside the core of the cancer, and they come out in little tubes almost. They put each of those into a separate tube and do the diagnosis through that.
Chemo was the scariest word
Absolutely, chemo was the scary word because you think about stage 1 people, and not to belittle it, but it seems simple. In the scheme of things, it was just getting an operation, having a small thing taken out of you.
Then radiation, which is not fun, but it’s better than chemo hypothetically. At least that’s what people will tell you.
It seemed like a bigger ordeal because you think back to your parents’ chemo — I hate to put it that way, but before pills that would help you not puke or poop, it had to be even more miserable.
I think because the patient advocate had mentioned to me that I don’t want chemo before I left for vacation, in my mind I’m like, “Okay, if I have chemo, I’m doomed. That’s just the worst-case scenario.” Little did I know that maybe stage 4 was the worst-case scenario, but I didn’t know stages existed then.
Treatment Decisions
Your biggest questions
I didn’t know there were stages. I didn’t know there were positive or negatives for estrogen [and] progesterone. I had no idea any of that existed.
For chemo, it was [a question of] how long, because I didn’t have a gauge of what that looked like either or what that would feel like.
At first, I don’t think I asked a lot of that kind of question. It was more of, “Now, what is the plan? How do we do it? Am I going to die? How bad is it?” The simple stuff. That was where my head was at with the patient advocate.
By the time I got to the surgeon, she filled in a few more dots for me. I don’t think I knew how long or what that process was yet, but my surgeon is one of the best. I felt really comfortable with that.
She laid out things really easily. She answered any questions I had, and at that point, I didn’t really know what I should be asking.
Luckily, I have a cousin who’s a surgeon who was on the phone with me and her, so that helped a lot in terms of her asking questions and telling me about that later.
How did you choose hospitals?
I think it was decided for me, to be frank. I’m at the same place I get my mammogram every year, and my patient advocate was from CPMC Sutter Health.
When it came down to that, before I even got the diagnosis, they were setting me up with people in the network.
I just asked her who was the best and who she would go to, and she picked for me. That’s how it came about. I didn’t really question any of it.
Did you consider switching medical teams?
I didn’t even think about it, but when I met each one of my doctors — when I met my surgeon, I knew she was super smart, direct, and to the point.
Everyone in the office was great, so I had a good feeling. I don’t expect my surgeon to be warm and fuzzy. I want to be someone who’s going to be badass and get that shit out, and be as great at that as possible so that I know hands down, I’m fine.
I did do a little bit of research on the backend of anybody that knows her. I know a lot of people that work at hospitals. She’s one of the best. I was confident with that. My oncologist was wonderful.
There’s another guy that’s also an oncologist in her office who I met. I was a little bit like, ‘Hmm, I’m not sure I like him.’ It ended up being one of my favorite people.
All the nurses were amazing. I didn’t question any of that because I felt like they knew what they were talking about, and they didn’t sugarcoat anything. My communication style was more like that.
By the time I got to my radiation person, I really didn’t feel it, and I realized that I really didn’t have to be with him that often. It was once a week, and he’s the best at plotting where the rays go.
If I was going to do it again, I would probably go somewhere else. Maybe. But it wasn’t as drastic, and it didn’t mean as much to me there because the 2 people that actually gave me radiation every day were wonderful.
It becomes, “Do I want the best person I can find in the best place I can find with the best machines?” Yeah, I do.
Did you research your doctors?
I’m part of Bay Area Young Survivors, and so that group has been good to kind of bounce off who people have used. With the radiation oncologist, I had 2 names, and I sent both of them out there.
I got pretty much a 50-50 of the group liking both of them without many issues. I had maybe 1 or 2 talking about the impersonal piece, but that’s less important to me.
I usually would go on a Thursday. I wanted to have enough time over the weekend, because I worked through chemo. I’d go in on Thursday morning at 9:30.
They go in. Through my port, they’ll take out blood to check all my levels. That will be [checked] in house. All my levels will come back, and then they will figure out what they needed to do for each one of my chemos in terms of my body weight, blood pressure, and my blood chemistry.
They would put it all together in house in terms of the chemo, and it would come out in bags. I would get it in that order: TCHP.
The taxotere was the first one. It would be hung up in a bag, and I would just sit there and work from the office. I had my friends go with me. I would have one friend each time.
They would go through each one of the bags. It would take 4.5 hours total. While that was happening, I would also talk to the doctor.
My oncologist would come in. We’d talk about everything that was going to happen or was about to happen for that first one, what to expect, and what I should possibly be ready for, which was good.
I really like knowing more of the ‘tell me what’s going to happen’ because I want to be ready for it.
It’s like turbulence. If they get on the speaker and say we’re going to go through a rough patch, I’m ready mentally. That’s how that day went.
There was another doctor there, who was also an oncologist, who’d come in and deal with more of the everyday stuff like fears, any questions I have, or anything I didn’t get answered from the first oncologist.
Then they just keep checking on me, changing the bags throughout the day after that, and at the end I would go home. I couldn’t really eat during it. I would mostly drink fizzy water. That’s where my obsession started for that.
Then the first day I was fine. I could go to the gym and be okay. The next day I had a lot of nausea, diarrhea, that kind of stuff.
By the second cycle, my nausea would start as I’m getting my infusion. They started to put another chemical — I don’t know what it was — into my infusion bag so that it would help, but I still was nauseous, and diarrhea would start that day. Those were constant through the whole process. [It was] only better during the third week.
Sore throat, swallowing — that was usually the first couple of days. Then I started using Biotene (mouthwash) the day before chemo, the day of chemo, and the day after, and I didn’t have any issues with that after.
The food thing sucked. Not being able to taste food was the worst. I had super smell, and I could smell everything that would be amazing. Then you take a bite, and it was like eating bark.
That’s mentally challenging and physically challenging because you’re trying to survive. You’re trying to be productive, you’re trying to get out when you can, you’re trying to do things, and you’re trying to have as real of a life as possible. Then you can’t eat normal things.
I did a lot of protein shakes. Jello. I don’t have a sweet tooth, and now I do Ice cream became my best friend. I became an expert at that, so it’s just trying to get over that piece every week.
It was like that until the third week, when I could start to taste again. That was across the board, that one symptom. The diarrhea, fine, you deal with it. The nausea, you deal with it. I could be downplaying this for other people that that’s horrible for, but for me that wasn’t as bad.
Describe the side effect cycle
The first round for me was the worst. First and last were the worst. It started to hit me Saturday. I’d really start to feel it. It was more sore throat, which I ended up finding a solution for (Biotene mouthwash).
The nausea was constant for me, even though I was taking pill. I wasn’t throwing up, but I was nauseous. The diarrhea was constant for me. I had tons of pills for those.
Kind of feeling crazy at times. I would not know what I’m doing or where I’m at. I would have to sit down a lot. Got a little tired, and then after that, it was more of losing the memory, losing words, not being able to find them.
Getting tired, having to sit down a lot, that kind of thing. Not being able to focus on my work like spreadsheets. [It was] horrible, so I got a lot of the easier stuff to do.
But I would absolutely fly weeks 2 and 3.
I used Purell like a gun. Third week is good. Then you go back in again, and by the second cycle, I had lost my hair 2 weeks in. My eyebrows I kept until the end. Eyelashes fell out the last one.
Food became unpalatable. Probably the second cycle was when I lost all my taste. I’d lose that for anywhere from 10 to 12 days. I’d have 2 days of feeding frenzy!
What helped you physically with side effects?
Biotene mouthwash (sore throat and swallowing)
Exercise
Protein helped, and exercise helped me. Actual exercise. It doesn’t have to be anything big. It’s just moving, because I felt it moved the chemo through my body faster.
What helped you deal with side effects emotionally?
Being around friends and choosing not to talk for a lot of the time.
Sometimes it was not talking to people, not going out, watching bad television. Other times it was somebody coming to pick me up and drive me around. “I don’t care where you’re going,” is what I said to my friends.
So many people call you and ask “What can I do? How can I help?” I couldn’t come up with anything. After a while you kind of figure out what you need.
It’s like if you’re going for an errand, come pick me up. Getting into the car is hard. Getting out of the car is hard. Walking normal — hard. Thinking — hard.
But you could still be with somebody and not say anything and roll through it. For me that was huge.
Being around that community for me was enormous. Not hiding so much. I think that you have to absolutely do that. Not saying you shouldn’t hide when you need to, but as much as possible, getting out with people that are not a lot of work for you.
How did you hear about medications that would help prevent side effects?
I went to chemo bootcamp. Most frightening. That was one of my bad days. Before chemo started, they bring you into the oncology office. This nurse that’s new comes in and goes through each one of the drugs you’re taking.
She goes page by page into all these things that are going to happen to you. It’s this long list of horribles. You’d go through page 1, 2, 3, and that’s like, “First drug, here you go.”
I’m like, ‘I don’t want to do this anymore,’ and she’s like, ‘I have to legally go through it.’ I’m like, ‘Okay. So for these 4 drugs, all of these things are the same. Can we agree on that?’
I started to fast-track whatever we needed to do, and after a while I just stopped listening to her because I couldn’t handle it.
Mentally, I couldn’t get into all these things that are going to destroy my body, so I just tuned it out. That was horrible.
Then my friend took me for drinks. It was like 2 in the afternoon. We just went drinking. That’s how I dealt with that piece.
Back to the other stuff, that’s where I learned what was going to happen to me hypothetically. From there, I’m part of some Facebook groups that are for triple-positive.
I just started following threads and asked questions there. You get instantaneous answers. That’s where I found a lot of solutions to simple things, and I would just try something. If it worked for me, great. If it didn’t work for me, it was gone.
Did doctors and nurses ever give advice about side effects?
Sometimes, like the diarrhea and the nausea. That would come from the doctors, so I had special pills for those. I ended up for the first time ever buying one of those weekly Monday to Friday [pill cases] because you can’t remember shit.
I couldn’t remember the labels of anything either, and all the drugs have 2 names. There is the normal name and then the simple name, which is not simple, but it starts with a letter.
Each one of my drugs, beforehand I’d take a big marker and put “D” for Decadron and “C” for another like Colace or something. I would label them that way, and then on my notes I would just put “C” and “D” and write it out that way. I’d have a reminder in my phone as well, because chemo makes you stupid.
That’s the way I would lay those out. Those drugs were given to me by my doctor. Then Imodium was part of that, too.
When these don’t work, that will work last. But everything that the doctor gives you is much stronger than anything you can get out in the field, so I did a lot of that.
My talks with the doctor every 3 weeks, I’d say, “This is what’s working. This is what’s not working. Do we have anything else I can do?” Then they would suggest stuff, or I’d start taking things.
Then I’d email and let them know, “Is this going to get in the way of anything we’re doing? Is this good? Is that bad?” They would instantaneously pretty much get back to me in a day. I was lucky I had a good team.
What was the response to chemo?
I had a complete response from chemo, which means that they couldn’t find the lump by the time I was ready for surgery and had an echocardiogram.
I had 2 echocardiograms and 2 MRIs in that time of my chemo to look and see where we’re at in both of those stages, in terms of my heart and also the size of the tumor. There were scans before chemo, during chemo, and before the operation.
Doreen’s Video on Surgery Prep & Recovery
Surgery (Lumpectomy)
Preparation for the guided-wire biopsy
I had to do a needle biopsy first, called a guided-wire biopsy. That setup [was] horrible. No way to sugarcoat that. The day before, the night before you go in, they put this tiny needle into your nipple, and that hurts!
That lights up the stream for where the cancer would flow into your lymph nodes. From that, they can tell what lights up, and that will be what they take out.
For me, you could see it on the screen. They showed it to me afterward: 3 of them lit up. The next day you know they’re going to take out at least 3 when they go in there.
That doesn’t mean they’re cancerous. It just means they’re lit up, and that’s the path the cancer would travel if it’s traveled, which is scary when you think about it.
Describe the actual guided-wire biopsy
The next day you go in, and the needle-guided wire is what they need to do next. They gave me Valium because I was stressed out, and I’ll take a Valium any time they offer it when I’m in the hospital.
We went downstairs. The 2 ladies that were in one of my tests along the process were the same ladies that were doing this. I think they were the ones that did my core biopsy, actually.
They put you in the mammogram machine, which crushes your boob. This time it was sideways, so it was more like this, because my cancer was on this side. They numb it a little bit, but not enough is the thought.
Then they put this paper-thin wire into the spot where your tumor was. You can see that happening all while you’re doing it, so you’re looking at a screen watching a wire go into your boob, feeling the pain of that first and foremost.
When they take that out, the wire is still stuck in your boob, so you can look down. I’m like, “Can I look at it?” They’re like, “You sure you want to see that?”
I’m like, “I absolutely want to see it because it’s hopefully a one-time thing.” There’s a little wire that goes, and it came out to here. They ended up taping up and putting on my boob.
The lumpectomy was next
I went in for surgery. That was the best part because I get to sleep for that. There’s not a whole lot of talk. I just went in, you lay on the table like Jesus, and then you’re out.
I didn’t stay overnight. It was a 1-day surgery. Once I was fine, I left. They told me that they got all the margins and there was nothing in my lymph nodes.
From there it was just rehab. I slept a lot that first day, but since then it’s been more rehab in terms of arm mobility, physical therapy, that sort of deal.
It wasn’t a mastectomy or anything like that. It was small and disappeared pretty much [after chemo]. I didn’t have to worry about that.
Because the lymph nodes were clean, I didn’t have to worry about anything after that either. Both of those pieces very lucky. Just a lumpectomy. I didn’t have any of the history either, so I didn’t have the BRCA gene.
Doreen’s Video on Radiation
Radiation & Side Effects
After surgery you had radiation
I think it was a month or a month and a half at most. So 6 weeks is probably max. I started going to get the setup probably at 4 weeks. I met my radiation oncologist. I learned what was going to happen. I found out how long I would have to go.
Then they tell you whether it’s a full boob or just partial spot. I had full boob. I think I didn’t grasp what that meant or anything. All my big questions were more about my heart and lung because it’s on my left side.
They talked about how the plotting works, and I still don’t grasp the understanding of the technical piece of it, but I was lucky I only had to go for 4 weeks.
If I had to go for as long as they initially thought (8 weeks), I don’t know if I would have survived as well mentally and skin-wise.
Describe the radiation process
There’s an initial meeting that talks about what they’re going to do, what it’s going to look like, and how they’re going to plot it out.
Then they go away and plot it out in terms of the different layers of radiation, how close it’s going to get to where they need to go, and which angles they’re going to take with the beams to be able to hit it the best way.
You go back after that, and they do a setup for you. You get into a different machine. They tattoo you, and that’s going to line you up to everything in the room so they can get you in the exact spot that they need to.
That morning you start, you go in, and it’s probably 30 to 45 minutes. They get you in the right spot, they take pictures over and over again, and then they finally radiate you. For me I had 3 on one side, 3 from the other side.
You lay down in a huge machine. They prop you up, which is kind of funky. I didn’t realize that until you kind of look around, so you’re off the ground probably 4 feet, 4.5-half feet.
There’s a machine behind you that’s almost like an MRI machine that comes up and around over you. When they’re doing films, there’s a bounce board behind it, so they’re both coming out and around you. It’s pretty much showing your boob to everybody.
I have a gown on my right shoulder, and it goes down to my waist. They put a blanket on me up to my waist, and that whole part is open from there.
You look up, and there are lasers in the ceiling. There’s lasers to each side of you. Then the machine has lasers. Then there’s lights that I can see that will tell me when the laser’s on and when it’s not on.
Also, I have a box taped to me, too. I don’t know what the box does. I think it was more of the measurement of where my breath was. Once that hits a certain level, that’s when they can radiate me.
What were the biggest side effects from radiation?
In the beginning, everyone tells you that radiation isn’t as bad as chemo. I personally hated radiation, mostly because chemo was something I could manage and work through, and it was rational thinking for me.
Radiation was every day, Monday through Friday, 5 days a week for 4 weeks. It’s not very long.
For me, I had to hold my breath during radiation to be able to push my boob up high enough that you’re not hitting any of your lungs and heart, so of course now you have that in your head as you’re doing the radiation of, “It’s going to ruin my lungs. It’s going to hit my heart.”
Then the machine is imposing. It’s enormous, it goes around you, things are coming from the ceiling, and the people that are techs helping you are running out of the room while you’re sitting there.
It’s just danger. Danger, but you’re still on that table. You’re the one being affected by it. For me, that mental game was a lot harder. Then when they lay you out, they marker you.
Mine was from underneath my underarm up to my chest bone, all the way down underneath my boob, and I didn’t realize that whole piece would get red.
I just didn’t think about it till week 2. I started getting really red there. It’s a constant burning that doesn’t go away. Now I have the incision underneath my arm, which is now burning along with the rest of my boob and my nipple.
You put on lotions every night, every day. Then you have to wash all that off in the morning, because you don’t want it on there when you go in. It’s just a game of constantly being sore and red like a full-on burn.
It wasn’t fun. It was mental, and it’s physical because of the burning. Then there’s the other piece of being exhausted. You hit a wall. I was more exhausted than I was at chemo.
You had to go to physical therapy
I worked out after. I didn’t do a lot, but I’m an idiot and had fluid on the incision for the lymph node biopsy that started to build. It got more and more pressure, so it ended up being 80 ccs of fluid, which is apparently a lot.
They had to go into the scar and drain that. Another needle process, which is not fun. 7 on the Richter scale. I had to have that happen twice to me.
The first time, it was probably because I was working out. Second time because the pocket’s there. They had to drain it, so I had those 2 things.
With the actual lumpectomy, no issues. It’s right around my nipple. But the most problems I’d been having is with the actual clot underneath my arm. That stops any mobility overhead, and then it started to cause some tightness through my peck. On top of that, then you add radiation.
Radiation also tightens all of this. The mobility becomes worse once radiation starts. I started radiation a month after surgery.
You still had to get infusions after radiation
After radiation ended, I went for my infusion. I was still getting infusion of Herceptin and Perjeta because my chemo is estrogen- and progesterone-based.
It’s fueled by estrogen, which we naturally make in our body, more so as females. Now that just blocks it. It was part of my chemo the whole time.
It was the last 2 that I would do. It’s a “non-chemo chemo,” is what I call it. I do that every 3 weeks until end of September.
How long will you take hormone blockers?
Because I’m not menopausal yet, I don’t know if that’s going to kick me into it. I take a pill for 5 years or until menopause, and then they give me another pill for another 5. So total of 10 years on hormone blockers, which should kick me into menopause.
Those will be every day for 10 years or until something better comes around. I’m trying not to go down the Google path of that yet. because everything I read about tamoxifen is horrible.
I’m hoping maybe something will come out better in that 10-year period that won’t be so damaging to my system.
My hair was down to my waist. Big, Italian hair! Not big-big, but I have a lot of hair. Thick eyebrows, eyelashes for days, that kind of thing, so yeah, it’s a vanity issue.
I worked out. I didn’t want to look as manly; I guess that’s the best way to put it. It makes me more feminine, I thought. That has always been my thought process around my hair.
That could be a security blanket. At this point, it doesn’t bother me anymore because I’m so used to it, but it was huge.
Losing your hair and that whole process around it, it’s a big one. That now shows everybody you’re sick. Whoo. That was big.
When I had gone into my first chemo, I started talking to the nurse who was giving my infusion, and I said, “What do you think? When do people normally lose hair on this? Because everybody has a different cocktail.” I did the whole WebMD and every single site and looked at when you lose it. Of course, they were saying quick.
Other people were saying not so quick. She had told me 2 weeks. That frightened me because that was quick. I questioned it, then she moved to maybe a month. I asked her to tell me the truth, and it ended up being 2 weeks.
What motivated you to finally cut it the first time?
That first week, I had my hair in a ponytail, and then I brushed it a little bit. Second week, my hair started to fall out in the brush, so I stopped brushing it. Put it up into a hair tie.
I’d wake up, and there’d be clumps of hair in my bed. Then I’m like, “Maybe if I don’t touch it, it won’t fall out.” It just looked horrible, so at a point, I was talking to one of the owners of my gym. He’s like, “Fuck it, I’ll just shave your hair.”
I’m like, ‘I don’t know if I’m ready for that.’ It was almost 2 weeks. Then I went home, and a big chunk fell out onto the floor. I texted him. I said ‘All right, let’s do it.’ He said, ‘I’ll bring my clippers in, and we’ll do it.’
I let my friends know I’m going to do it at the gym. This is the time. Probably 10 of my friends came. The guy that was initially going to do it didn’t do it. He wasn’t there, so I looked at one of my other friends, and I’m like, “How are you with clippers?”
He’s like, “I’ll do it.” Great. [We] went out to the patio porch and started with fun hairdos — mohawk and half my head — and then just shaved the whole thing and had a couple beers.
Just shaved it. It was probably a little bit longer than what it is now. It was probably what they call a 4-clip. That was 2 weeks in.
When did you shave it all?
From there, it started falling out more and more. By week 3, one of my other friends came over and shaved my head for me. That was it. I went completely bald.
I still had really big eyebrows and eyelashes, so I just bought a lot of earrings with my girlfriend, Elise. We went out and bought some cheap hoop earrings, and I just rocked it.
I work for a tool company for construction, and 4 guys in my office are bald. I have to walk in now one day with hair and the next day bald. I started taking pictures with all the bald guys at work.
It was called ‘Project Baldy.’ Any time I travel out in the field and guys are bald, I’d get another picture and get another picture. I asked advice for shaving heads, and that’s kind of the way that I dealt with it mostly.
Describe the emotional part of hair loss
It’s more the sick part, I think. Right now my hair is short. It’s not what I want, but it’s cute, and I’m cool with it because it feels like I’m doing this intentionally.
Being bald puts you into this whole other place of being the sick person, and that just makes me feel less viable.
I just don’t want to feel like the sick person. I don’t want to feel like that weak person that’s gonna die. It puts you that much closer to being what you don’t want to be.
It’s not even the imagery for anybody else. It’s the imagery of yourself looking into the mirror that’s so bad. It’s horrible seeing that and trying to figure out how do I make this me? You’ve just lost who you are right there in one second.
Everything you’ve seen yourself to be is gone. You’re still there, but it’s not who you imagine yourself to be. It’s bigger than dressing up for Halloween.
It’s like not many people put a bald cap on as a female. It’s not cute. Everything you’ve ever been told is never that.
I think the good part was for me was embracing it and just, “This is who I am now.” Finding ways to make it fun.
You had to learn how to draw in your eyebrows
I’m so not “chicky” either. I went to Sephora. There’s this one girl that did a really good job with her eyebrows, and that was what I was focused on.
I’m bald and looking at her eyebrows. She’s looking at me, and I’m like, “Can you help me?” She’s like, “What do you need?” I told her I needed eyebrows and needed them to look good.
She brings out this stuff, and I’m like, “You need to show me how to do it. I don’t want you to do it for me. I want you to show me how to do it.”
She spent so much time with me. [She] taught me how to do it. [It] was amazing. I gave her a huge hug at the end and have been doing it ever since. Hopefully the eyebrows come back, but right now it’s not as important.
Your hair hurt as it fell out, especially your eyelashes
Yeah, itchy. My head would get really itchy.
The worst part was my eyelashes. My eyelashes hurt a lot when they were falling out. You wouldn’t think as small as they are that they’d be as painful, but it was like little spikes.
Did you wear wigs?
They have a bunch of free places that you can go to that they’ve donated wigs, and of course they’re granny wigs. Horrible, horrible granny wigs. I did the whole “mom” style. Really short, blonde — and I’m not blonde at all.
I tried on afros and all sorts of stuff. I ended up with one big, huge for-real afro that I thought I would wear out one night for fun. I didn’t. I brought it back.
I tried to find anything that would look like me. I went to even nicer places. Beautiful wigs. I just never felt like myself, so I just never did it because of that.
Itchy. Hot. It was too much work. I ended up wearing scarves around my head. Luckily, it was winter, so I wore a lot of big scarves just kind of over half my head. That was fun.
Did you try cold caps to save your hair?
My stuff started to fall so fast. I talked to the lady there. It seemed like a lot of work. You have to have somebody with you for a couple hours beforehand. Then hours afterward. It was so expensive.
If I spend $2,000 over the time that I’m doing this to save my hair, it seems stupid, vanity-wise, for me.
Other people have done it, and good for them. But I’d rather take that $2,000 and go on vacation when everything’s done. That’s what I did. Hawaii!
Work & Finances
Doreen’s video on working during treatment
Did you work through chemo?
When I was diagnosed, I called my boss right away when things looked funky.
I said, “Look, I have some stuff going on. It doesn’t look good. I’m not sure what that means yet. It could possibly be cancer. I’m not sure, but I’ll let you know when that happens, and we’ll talk about what that looks like.”
When I was diagnosed and had my full plan, I called him and said, “This is what’s going to happen. This is how it works. These are when it’s scheduled. I’d like to still work through it and see if I can do that, because I think keeping busy is going to be better for me than wallowing and thinking about cancer all the time.”
That was my thought process. I have 2 jobs, and it was like that for both. My other job is at the gym at night, so that becomes another piece of the pie. How do I stay awake for that long? Can I handle it for that long?
My gym was amazing in terms of that and said, ‘Any time you need coverage, we can do that.’ I used that as much as possible, but I also used the gym as a place that would keep me involved, keep people on me, and keep people seeing me and helping me mentally.
I would work out with them and teach them. I could teach from seated position if I needed to. I spent a lot of time sitting down and talking to people from there or getting up, walking over, helping them, and sitting back down.
But I had desk work, too. For my desk job during chemo week, I’d work up until the day of chemo. From chemo, I would work from there, so I could just do emails and phone calls during chemo. That was perfect. Then that Friday I was usually pretty clear, so I could do that and work.
The week after I couldn’t fly, and I couldn’t be on the train or anything like that, so I’d work from home during that week. Then that following week I would fly.
I would get on the plane. I would wear a mask, and I would fly places. I wouldn’t fly any more than 2 hours. That was my goal. As long as my white blood cell count was fine, I was free to do that.
As time went on, I would be able to do it the second and third week. I could keep things together; I could answer emails. I could do my work, but I couldn’t do anything super detailed. Looking at Excel spreadsheets took me really long periods of time to focus.
I was pretty open with the people that I worked with, like, “I can do this, but I can’t do this. If you could take this for now, I can work on this for now.” I picked up a lot of the smaller stuff, the less-detailed stuff, the busy work. That was good.
Once I could travel, I didn’t have to do a lot of that busy work. All I had to do was be supportive and helpful and be able to come up with things in my head. I would mostly write those down or know them pretty well.
Did you work through radiation?
I did not work through radiation.
I worked through my first week of radiation, and right now I’m on disability. My disability is 2 months total.
Now, I’m starting to heal and be able to stay up later than 8 at night. Usually during radiation, I would sleep probably at 11 p.m. and take a nap.
Then I would pass out narcoleptically around 8 p.m., then wake up at 2 a.m. and be up all night. There are different cycles of not sleeping and sleeping.
How was dealing with insurance during treatment?
I have a high deductible. The low deductible insurance was more money in the long run because people apparently don’t use all their insurance, shockingly.
[For] my insurance, I had a full all-in from September to December. I spent about $20,000 on top of my insurance, so that’s pretty shitty because that’s including what I pay for my insurance monthly.
That was my partial deductible. It falls into this co-insurance, and that was also all out-of-network. Out and partial was $20,000. So now that reset in December.
Through my work we deal with a company called Compass. I would send all my bills that I paid to the lady at Compass, and she would go and check them. Things that had not been marked off, she would deal with.
I had a lot of confusing back and forth with her. I think partially because they’re confusing and partially because the insurance companies are confusing.
A piece of it was I couldn’t focus because of the chemo, but it all worked out in the end.
Mental & Emotional Care
What were hard parts of cancer you didn’t anticipate?
I think the hardest part about cancer is that in the beginning at least, it’s not about you. It’s about everybody else.
It’s like trying to make them feel comfortable. It sucks, and it’s lame. People are shitty sometimes. The death stories and the stories about people they know who have died of cancer, the rambling of stupid stuff.
That was the worst part. I think the baldness is less of that, but it opens up the door for random people to start telling you cancer stories and death stories.
I started getting a little bit East Coast on them. I would have conversations with people who’d start stories, and I’d be like, “You’re not telling me a death story, are you?”
That whole baldness brought out a lot of that stuff.
Did anything surprise you?
A lot. Everybody says this, but there are people who stick around, and there are people who go away. I was surprised by the way people deal with it and make it about themselves.
I’m surprised that random strangers who have come up to me, mostly good in terms of seeing me, seeing me bald, knowing what’s going on, and directly asking me if I have cancer, which is strange.
I’m surprised by how encompassing it is. A constant. There’s not been in 9 months a week that I have not had an appointment. Still going through that.
That’s a lot. If I knew that before and people told me that, you don’t understand the enormity of it.
A sense of humor is important
You have to [make jokes]. You have to. When people see me drinking and say, “Should you be doing that?” I’m like, “What’s that going to do? Give me cancer?” Then they get all awkward.
The best thing my oncologist told me — I think it was in cycle 5 of chemo — she’s like, “You need to use your cancer card.” I was like, “I don’t know. It just doesn’t seem like I should.”
She’s like, ‘No, this is the time. Use your cancer card.’ I’m like, ‘I don’t even know what that means.’
She’s like, ‘Use it when you need to get out of things, or you just need something and you’re not getting it, or just use it. Use the cancer card.’
Any advice to people who’ve just been diagnosed?
Use all the things. Anything that’s been suggested in terms of free services or trying things out. Try everything. See if it fits for you.
Don’t just listen to people. I think you have to make your own decisions. And cry at will.
I don’t care about a lot of stuff anymore. Not as important. Like, eh. I eat what I want. I drink what I want. I’m not worried about those things yet.
Be your own advocate
You have to. If I hadn’t pushed on along the line, it would be bigger and worse. I had already been diagnosed, and I’d already started chemo when I got a call back from the secretary of my [original] gynecologist’s office, seeing if I wanted to come in for a mammogram.
I’m like, “Have you not seen any of records that were sent to you? Because of you guys, I had this, this, and this happen to me. And I have breast cancer. I think you guys should know that you did not help me in any way. In fact, you were a block to my health care.”
Another example is there was this shot. It was something different. It’s a shot that they were going to add to my regimen that would make you horribly poop. It was going to be explosive diarrhea.
I did all this research at the end, and I said, “Why do I have to do this? These are all the side effects. How is that going to help me if it’s a 1% chance [of helping]?”
We started a debate back and forth, but for me it was more of the I’d hear it, then I’d sit on it, sit on it for a couple weeks, and come back with it. I needed to absorb it first.
As long as you’re thinking about it, coming back and talking about it, and you’re getting the response that you either need or the response that at least makes you understand a little bit more, then I think you’re okay.
But if you’re not getting that, you need to seek it elsewhere. Do it.
Be prepared for the sudden drop-off in care and attention
That shift is hard. It’s like, bink, you’re done, and there’s less care, which is weird. I feel better that I’m not that important, right? It’s a double-edged sword of it’s cool, but it’s hard.
Another thing I guess I didn’t realize for myself is that I now am a lot more open about talking about things than I ever was, because people along the line would ask me questions about cancer in general or how I’m doing and that kind of thing.
Before, I’d just be like, ‘Yeah, I’m fine.’ Just throughout the whole process, I would tell people, ‘This is how I feel. This is what it feels like. This is what’s going on. This is why I’m in the process.’
Draw boundaries with people
I didn’t draw boundaries that made other people feel comfortable after a while. At first, it was like I realized it was all about them, and it had nothing to do with me.
Then I stopped getting into those conversations with people. The conversations I had as I got through more were more for my benefit.
For me to think about stuff, it was less about making other people feel comfortable. I think it was an interesting shift. I don’t know when it really happened.
You’ve got to feel that out for yourself. Everybody’s got to go through whatever’s comfortable for them.
In her story, Stefanie also highlights how she navigated the hair loss post-chemo, how she approached work during treatment, and the impact of the breast cancer diagnosis on her marriage.
If my cancer is the worst thing I go through in my life, I’m very blessed.
I know there are people who have had it way worse than I did with cancer and otherwise.
I just tell myself what I’m grateful for all the time. I have my family, and there’s people out there who don’t have that. I just try to count my blessings.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Diagnosis
What were your first symptoms?
I was pregnant. I gave birth on October 4th, so 2 days before I found out everything. I found a lump in my breast while I was pregnant.
I was 5 months along when I noticed it. I was usually in and out at my appointments, so I brushed it off and thought it was a clogged duct. I just didn’t think anything of it.
After I gave birth, one of the postpartum nurses said, “You have a lump on your breast.”
I said, “I know. It’s a clogged duct, and it’s gonna go away when I start nursing.” They did a sonogram that night, and my OB/GYN felt horrible for me.
I look back, and I think ignorance is bliss in a way. It’s a blessing that I didn’t know about it during my pregnancy, because I would’ve stressed out. My doctor said if I had found out when I was 8 weeks pregnant, there would’ve been other options, and who knows what I would’ve done.
The way it worked out for me was okay. I’m not saying it would work for everyone, but it worked for me.
How did you get the diagnosis?
They did the sonogram on the night I gave birth. They did a biopsy the next day since the sonogram was inconclusive.
They told me I could call on the 6th for my results. I was still inpatient from giving birth after my scheduled C-section.
My husband was working because I told him I was going to need a lot of help when we got home, so I wanted him to be working as much as he could until then.
I was alone and called the radiation department. The doctor said, “I’m so sorry. You have cancer.”
I got out of the hospital the next day, but I was just ready to go home right then. I wanted to crawl into my bed and forget this was happening.
Originally, I was going to do my 4 rounds of AC and 12 rounds of Taxol and Herceptin. Then we were going to do surgery. We decided on a lumpectomy, especially because my little one was so small.
My surgeon said she was confident she could get it all, so that’s what we were gonna do. You make plans, and God laughs.
My ejection fraction was really low at one point, so they had to stop my Taxol and Herceptin. We did the surgery early. Because I had to stop chemo for a while, she said they were going to go ahead and operate.
That gave my heart some time to rebound. It did bounce back. I was under the care of a cardio specialist.
What was your chemo regimen like?
I had AC every other week. Then I did 12 rounds of weekly Taxol and Herceptin. The first chemo was terrifying. It was the scariest thing I’ve ever experienced.
That’s when everything became real for me. You see all these people already well into their treatments, and you see what you’re going to become.
They hook up to this bright red bag of chemo, and it’s so scary looking. They have to tell you all the potentials of what could happen. They have to tell you all the possible wors- case scenarios, and you’re sitting there wondering if it’s going to happen to you.
I had a 6-year-old and a less than 1-month-old at home. I had a lot to worry about. Luckily, I had the nicest nurses. As scary as it all was, I knew it was going to be okay.
What side effects did you experience from chemo?
I was fine the day after infusions. The day after that, I felt like a train hit me. My bones ached, I couldn’t hardly function, and I was nauseous.
They had given me anti-nausea medications, but I felt fine the day before, so I didn’t take them. I learned very quickly that even if you’re not feeling nauseous, you should still take the medicine.
I would be tired and need a day to recuperate, but then I’d be okay. It wasn’t so bad. I felt so much better on the Taxol and Herceptin than I did on the AC.
I had some fatigue and diarrhea a couple of times, but other than that, it was so much easier. My hair started growing back during it, which I was not expecting.
They did a lumpectomy and lymph node removal on January 27th. I had a revised lumpectomy the following week because they didn’t clear the margins the first time.
I told her, “If you can’t clear the margins after this, just give me a mastectomy.”
At that point, I just wanted the cancer gone.
I was thinking, “You just need to get this over with.” They told me they weren’t sure about my lymph nodes when I went in for surgery. They said if they wound up needing to take them, I would wind up having to stay overnight in the hospital.
I was sad about needing to be away from my kids. I was nervous and wondering what was going to happen. At the same time, I was confident in my surgeon and knew they were cutting out what they could.
There was part of me that was just glad we were doing something and glad to be there fighting the cancer. There was another part of me that was nervous and just wondering what was going to happen.
I ended up having to stay overnight. Calling your little kid and telling him you’re not going to be home that night is terrible. Not being able to hold your baby is one of the worst feelings in the world.
I remember waking up from surgery, and my surgeon being there hugging me. She told me, “It’s good. You’re done. It’s all over.” She’s amazing.
I wasn’t in any pain when I woke up, thankfully. I had a drain, and I didn’t like that. That was a little uncomfortable. I wasn’t happy about having to stay overnight.
My husband would probably tell you I was argumentative because of that. Once I calmed down about that, I was okay.
They were giving me Tylenol intravenously, and that worked really well. They told me I was going home the next day. I just kept that in my head, and that’s what helped me make it through.
When I got home, everybody took a turn to come and stay and help me. I couldn’t lift anything because of the lymph node removal. My best friend came and stayed for a day. My grandma, my aunt, and my husband took a day off, and everyone was just so wonderful.
It really did take a village to get me through all this. I’m so lucky to have my village. I can’t imagine going through what I did without my family.
You had more treatment after surgery
After surgery, I went once a week for 9 months to get Herceptin. It’s really nothing compared to the other chemo I was doing. At that point, I was feeling so fine that it was mostly just an inconvenience.
Describe the radiation therapy
I also had 30 rounds of radiation. It was horrible. It’s not because it’s painful. I did get a burn, but that’s not why it was horrible. You don’t feel it while you’re getting treatment.
It was just an inconvenience because you have to go every single weekday. If they’re backed up, it just takes forever. The treatment itself isn’t long, but the wait times could be terrible.
I wore wigs for a little while. I stopped pretty early on, though, because they’re annoying and itchy. I don’t care how nice it is; it’s still a wig. I was more comfortable not wearing anything than wearing a wig.
My kids were so used to me being bald, so it was fine for me. Their friends came over one day, and they were horrified by my bald head. I had to apologize profusely, and of course, I was crying.
I hated that my kids’ norm was mommy not having any hair. That shouldn’t be normal for any child.
Did you work through treatment?
I went back to work in December in between getting AC and Taxol. My job let me take off one day a week for treatment when I started Taxol.
I’m a teacher, and at that point, I was teaching special ed pre-school, so that wasn’t easy. I was grateful my job was accommodating.
I enjoy routine, so going to work was a break from reality. It was 6 hours a day I could not think about cancer and just do my job. In a way, I think that helped get me through it.
How did cancer affect your relationship with your husband?
My husband and I already had one son. We got married and had a baby right away. That wasn’t the easiest road, and we have our own notions of how things should be.
I’m opinionated and high energy. He’s more passive and quiet. We’re complete opposites.
My husband was terrified in the beginning. We just had our second baby, and here his wife is with a cancer diagnosis. He didn’t know what was going to happen.
He did everything for me despite being scared himself.
Anything I asked of him, he did. I couldn’t have asked for somebody better. He wasn’t singing from the rooftops about how amazing I am, because that’s not his style.
He was just so supportive. He kept it together when I couldn’t. The laundry was done, the kids were fed, and everyone was where they needed to be.
Looking back, I realize how important it was to me that he took care of those little things.
I had to learn really quickly that I couldn’t do everything I was used to doing. I wasn’t able to make lunch or get my kid on the bus.
I was tired. I just had to resign myself and realize when I couldn’t do things.
Emotionally, it took a toll on me. I cannot imagine leaving my children without a mother. Especially the timing of my diagnosis.
I went through a moment of “why me,” because we had a newborn baby. It was just terrible. I heard the best sound of my baby crying and heard the worst thing you can hear 2 days later.
I have my mother, and I know that everyone would step up and do what they had to do, but it’s not the same. Those are my kids. They’re everything to me.
I asked my doctor right at the beginning, ‘Am I going to die?’
She looked at me and said, ‘No, you’re not going to.’
I’m so hypersensitive to my body now. Any little thing can alert me. I live with a little bit of fear. I remember in the beginning thinking, “I don’t want to go through that again.” I really don’t, but I did it once. I know I could do it again if I had to.
Now, I’ve settled down. There are days where I forget I had cancer, and there are days when it feels like it was yesterday.
Every day is different for me. I can go days without thinking about it. I feel compelled to share my story where I can.
If my cancer is the worst thing I go through in my life, I’m very blessed. I know there are people who have had it way worse than I did with cancer and otherwise.
I just tell myself what I’m grateful for all the time. I have my family, and there’s people out there who don’t have that. I just try to count my blessings.
What advice do you have for someone who has just been diagnosed?
Stay positive even on your worst days. Try to find something to be grateful for, even if it’s the littlest thing. Don’t be afraid to lean on other people for help. Somebody set a meal train up for us, and that was amazing.
Don’t feel embarrassed about accepting the help someone is offering you. Take the help. Don’t be afraid to ask for it either.
