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
Before being cleared to start chemotherapy, I needed to have a few tests and procedures to make sure that my body was healthy enough and ready for chemotherapy. I had an echocardiogram to test my heart, blood tests to test my levels and a mediport placed in my upper chest area.
The day before starting chemo I had a minor surgery to have the mediport placed. Over the course of my treatment, I will have countless injections, blood tests and infusions. Having a mediport will eliminate the stress on my veins (which have already taken a beating). The mediport is how my blood will be taken, how chemo will go into my bloodstream and eliminates the need to have an I.V. every time. This surgery was really no big deal, but the pain from recovery was more than I expected.
My upper chest/neck area, where the mediport was placed, was super tender. I could barely turn my neck or lift my arm above my head. I had trouble lifting my head without putting too much stress on my neck. It was much more challenging than I was prepared for. This was the first little taste of what it is going to feel like to ask for help – especially with the boys.
As I get ready for 16 chemotherapy treatments over the next 20ish weeks, I keep thinking about how I can keep things as normal as possible for Aidan and Cooper. I am so grateful for the amount of support that we have from friends and family but it is going to be so hard for me to take a step back and relinquish some control. Matt keeps reassuring me that I need to take this time to take care of myself so that I can be there to take care of the boys for years to come. Easier said than done.
I know that I can expect to have all
of side effects of chemotherapy to some degree – nausea, fatigue, body aches,
changes in taste. Of all of the symptoms that will cause actual physical
discomfort, the one that I just can’t wrap my head around is aesthetic and
emotional – losing my hair. For me, this will be the most challenging and traumatic.
With the type of chemotherapy that I am being treated with, it is a guarantee
that 10-20 days after my first treatment, all of my hair will fall out. Since finding out the date of my
first treatment I have been obsessing over how to handle this. When is it going
to start? Should I cut it short before? Shave it? What about Passover photos?
Should I cut it right after? What am I going to look like without any hair?
Will my wig look obvious? Will people stare? Will I still feel pretty? I can get
used to feeling sick on the inside but looking sick from the outside is a much
tougher pill to swallow. I also feel guilty for caring about
something so superficial. I should feel grateful that there is a treatment for
my cancer and just accept the side effects that come along with it. Why am I
putting so much importance on my hair? Yes – I have always loved my hair. I
love the compliments that I get from hair stylists – your hair is so thick, so
long, so healthy, so shiny. Could I be putting too much importance on this?
Maybe? I hope so.
When I told Matt that I have cancer his immediate response was super positive, “We can handle this. You’ll fight it and everything will be fine.” My first thought was, “I don’t want to fight anything. I just want to take a nap and be left alone.” As we continued to share the news with family and friends, everyone’s positive messages always included sentiments like “you’re gonna beat this”, “you’re so strong”, “you’re a fighter”, “you’re gonna kick cancer’s ass”. I was surprised at how many times the “fighter” analogy came up in our conversations.
During these conversations, our
friends started using the hashtag “shaystrong” so it seemed like a good way to
label this whole journey. But, over dinner with friends, we discussed this
hashtag and decided that it doesn’t really fit my attitude. I’m more like a
#shaysdoingjustfine, #shaysgonnabeokay or #shayjustwantstobeleftalone but those
don’t really convey the positive cancer-fighting message, do they?
Of course I’m committed to beating my
cancer but I am not going to change my whole persona, become a cancer-fighting
superhero, and start wearing pink. Everyone knows I only wear black, white, and
grey. Still just me – though #shaystrong does have a nice ring to it.
So what is this blog even about? When
did this all start?
At the end of February, I made an appointment with a new gynecologist – Ilene Fischer at NYU. Matthew and I had decided that we did not want to have any more kids (our apartment is full) so I wanted to switch from an OB/GYN to just a GYN. While talking about my medical history I mentioned that my mom had breast cancer at 50. Dr. Fischer asked me if I had ever had any genetic testing and suggested that I do a blood test to see if I have any mutations of the BRCA gene – even though my mom is negative.
Also – A few months ago I had noticed
a lump in my left breast. It felt like a marble was stuck under my skin. After
doing some googling – the fact that it felt round and was mobile led me to
think that it was probably just a cyst. When Dr. Fischer felt it, she said that
it didn’t seem super suspicious but it was worth getting it checked out. She
scheduled a mammogram and ultrasound for the following week.
During the next week, Dr. Fischer
called to let me know that I was BRCA1+, which means that I have a very high
risk of developing breast and/or ovarian cancer. She recommended that I meet
with a breast surgeon, gynecologic oncologist and genetic counselor to discuss
my options for preventative surgery.
I made the necessary appointments.
The results of my mammogram and ultrasound
came back as inconclusive and the doctor recommended that I schedule a biopsy
for the following week. On March 25th, while walking to pick up one
of my students from school, I got a call from Dr. Fischer that the cells taken
during the biopsy were cancerous. My first response was “okay – what do I do
now?”. Dr. Fischer told me that she is going to try to move up all of my
appointments and get me in to see the right doctors ASAP.
Two days later I met with Dr. Deborah
Axelrod, a breast surgeon at NYU. She explained that I have Triple Negative
Breast Cancer that will be treated with a double mastectomy followed by
chemotherapy. The news was shocking but somehow I was still okay. We talked
about reconstruction and I met with plastic surgeon Dr. Mihye Choi who assured
me that my boobs will look better than ever when this is all said and done. I
scheduled my surgery for the beginning of May.
Throughout my meetings with Dr. Axelrod and Dr. Choi I couldn’t tell exactly what their attitude was about my prognosis. Is this really serious? Did we catch it early? Am I going to be okay? During my meeting with Dr. Choi she was so focused in explaining my what my nipples would look like after surgery like that I stopped her and said, “If you’re so worried about my nipples, I shouldn’t be worried about dying right?” She laughed.
After another ultrasound and MRI, I met with my oncologist, Dr. Sylvia Adams. She told me that my tumor had grown almost a full centimeter in less than a week. Because of this, she recommends that we start my chemotherapy treatments as soon as possible. It was during this conversation that it really hit me that this is my new reality and it’s all starting right now. It was easier to plan for a surgery a month away. I understand surgery and I can predict what the recovery will be like. Chemo feels like a whole different animal. I don’t know how I will feel – will I feel tired? Nauseous? Will I feel okay enough to keep working? What about the boys? Can I still bring them to school and play with them at the park? I don’t have any answers to these questions and for someone who lives and dies by a plan and a schedule this is the hardest part.
From March 25th-April 3rd
every day has been filled with doctor appointments, every conversation has been
about cancer and treatments. I almost can’t remember what we talked about
before cancer. Matt and I have absorbed so much information and the truth is,
it is exhausting. We have had to call friends and family to share this news and
it feels like were dropping bombs on everyone. It’s awful. But we’re doing
okay. We’re taking everything step-by-step and supporting each other through
this whole thing. We’ve got this.