An inevitable side effect of ACT chemo is hair loss. ACT is pretty major and even those ‘cold caps’ that help so many chemotherapy patients save their hair is no match for ACT. I have made no secret of the fact that I am terrified to lose my hair. I love my hair, but that isn’t the only reason- I just don’t want to look sick. I don’t want someone’s first reaction when looking at me to be, “oh, she’s sick”. We all have bad days where we feel crappy on the inside, but we can usually mask it with some make-up and a smile. I can’t wrap my head around doing this when I have no hair or eyebrows. It’s vain, I know.
The first step to not looking sick is finding a suitable covering for my unavoidable baldness. Enter Bitz-n-Pieces, a full-service wig salon in Columbus Circle. I met with Fernando who brought me to a private room for our consultation. He explained the different types of wigs and assured me that once we find the right wig, no one will be able to tell that I’m wearing one. I was hesitant.
I tried on human hair and synthetic wigs, halos, hats with hair attached, and even a long blonde wig (not my look) and eventually selected “Kim”, my long brown wig. The color wasn’t exactly right but Fernando explained that once we select the wig, he will dye the wig to match my hair color and style the wig to match my haircut. Once my hair starts to fall out, I will go back to Bitz-n-Pieces for my final fitting, where they will help me to shave my head and make sure that the wig fits perfectly. It should look just like my hair does now.
The whole process of wig shopping was strange. It definitely wasn’t fun, like wedding dress shopping, but it wasn’t emotional torture either. It felt like a mundane chore that needed to be checked off my list. I’ve heard that there are a lot of benefits to wearing a wig- it will take me less time to get ready & my hair will always look good, but will I still look like myself?
Day 1: Treatment Day- very anticlimactic. I felt pretty fine the entire day. I took a nap after treatment but not because I was exhausted. It felt like after you spend the morning in temple and just need a little Shabbat snooze. I felt jittery from the steroids but no nausea or fatigue. The worst part of the day was the anxiety of not knowing if I am one of the lucky ones who won’t have any major side effects or if major fatigue and nausea are around the corner.
Day 2: I woke up feeling rested (thanks Ativan) and still not experiencing any major symptoms. I definitely feel off though- a little foggy but not super nauseous or fatigued. Thankfully Cooper had a sleepover at Grandma & Pops’s house, Matt and Aidan spent the morning together, and I got to relax. It is 75 degrees outside so I was able to walk to and from my Neulasta shot, which I know will come with some achy side effects. I was able to stop by my friends engagement party this afternoon but took a nap as soon as I got home. Overall today was “foggy but functional”
Day 3: Another day of “foggy but functional”.
Day 4: I was able to get the boys ready and bring Aidan to school but had to take a nap as soon as I got home. I guess this is what fatigue feels like. I spent most of the day resting in bed until it was time for me to go to work. Thankfully, the work that I do is super flexible. I work as a private tutor and therefore work at most 3-4 hours/day. Since my diagnosis, I have been worried about how my treatment is going to impact my work schedule. I don’t work that many hours, but I love what I do and would hate to have to take a break from it. Consistency and routine are key when working with kids and I don’t want my unpredictable symptoms to have any negative effect on them. Today I was able to work with three students. I was definitely tired at the end of the night but it was worth it. It made me feel normal. Since my diagnosis, every conversation has had some element of “cancer”, but while I was tutoring, I was able to completely disconnect from that and focus on my students.
Day 5: Since treatment day, the only side effect that has had any impact is fatigue. Sure, I’ve had minor bone pain, but nothing that a heating pad can’t fix. The fatigue is frustrating because it forces me to go home and rest when I would rather be doing something else. I am grateful that up to this point feeling tired is the only negative effect that I’ve experienced, and it hasn’t even been that bad.
Well, the first day of chemo got off to a rough start. Matt and I both did not sleep well the night before and did not wake up as early as we usually do. When the boys started yelling, “The clock is green and yellow! Time to wake up!” Matt and I were not ready to start our day. We rushed to get the boys ready for breakfast and to get me ready for chemo. My chemo bag was not fully packed and there was no time for me to eat. I quickly got my stuff together, ran out the door, and left Matt with the boys to wait for our nanny to arrive. I stopped at the bagel store and ate a delicious scooped & toasted whole wheat everything bagel with egg, swiss, & avocado (yum) and headed to NYU for my 8am start time.
Each treatment day will have 3 parts. First, I have to get my blood drawn to make sure that all of my levels are what they are expected to be. Next, I wait to meet with my oncologist and NP to discuss my labs, symptoms, progress, and the plan for the day. Finally, I get comfortable in a chair and start the actual chemotherapy (which has many parts as well). It is a long day of sitting, waiting and more sitting, but it is also very anti-climactic.
Since I only had my port put in the day before, the area was still very sore. Getting the port ready for my blood draws and chemo was really painful. I didn’t know it at the time, but my chemo nurse, Stacy, told me that there is a numbing cream that I could have put on my skin 30 minutes earlier to numb the area and reduce the pain – I’ll know better for next time. Once I had my blood drawn, I had to wait about 45 minutes to meet with my doctors.
Matt and I met with my oncologist, Dr. Sylvia Adams, and the Nurse Practitioner Anna Lucas (both amazing!). They reviewed my labs, said my numbers looked good and cleared me to start chemo. We talked about all of the possible symptoms that I might experience from chemotherapy and what to do to alleviate the symptoms. It was comforting to hear that there is a solution for every symptom and that I shouldn’t feel completely debilitated from this. We also talked about using CBD or THC to help with nausea, anxiety and insomnia. Because there is no science research to support its effectiveness, Dr. Adams and Anna cannot recommend using it, though they did not discourage it either. If anyone has any experience with this I would love to hear about it!
Next, it was back to my cozy chair by the window to get started with the actual treatments. First, I got “pre-medicine”, anti-nausea & steroids to alleviate the symptoms, and then began actual chemo. The type of chemo used to treat triple negative breast cancer is called AC-T. I will have 4 sessions of AC (Adriamycin & Cytoxan) and 12 sessions of T (Taxol) with Carboplatin. First, the nurse administers the Adriamycin (Red Devil). She holds a syringe to control the speed that it enters my port. During the Adriamycin, I have to either eat an ice pop (yum) or chew on ice chips to avoid getting mouth sores. Then the Cytoxan is added to the port. I did not feel a thing the entire time – it is very strange. Overall, I spent about 3 hours in the chair.
Many of our family members wanted to be there with us at chemotherapy to show their support. I get it. This is a scary time that affects all of us and seeing me go through chemo is a way for everyone to connect to this experience. But, it was very anticlimactic. Everyone was just sitting around in the room, watching me sit in a chair. I don’t know what I thought was going to happen, but it was kind of boring- and crowded. I think it would have been easier to have visitors stagger in throughout the treatment instead of having a full room from start-to-finish or visit us at home afterwards. It was a bit overwhelming.
At 1pm, after I got disconnected from all of the wires and got cleared to leave, Matt and I walked home. I didn’t really let myself have any expectations of what chemotherapy would feel like but at the end of my treatment I was a bit surprised by how normal I felt. It was faster and easier than I thought it would be. As I write this, I am 6 hours post-treatment and I haven’t experienced any major symptoms. I am a little jittery from the steroids but the nausea and fatigue hasn’t hit me… yet.
Special Thanks to my Round 1 Team: Matt, Mom, Dad, Mimi, Poppop, Grandpa, Jordan, Dan & Noam
25% done with AC 6.25% done with chemo! #shaystrong
#shaystrong 