Monday, July 14, 2014. It was exactly one month to the date that I got my original diagnosis of breast cancer. It was the longest month of my life. Now, it was game day.
I felt well rested in the morning. After weeks of night duty with Mira, I finally slept through an entire night as we had just hired a night nurse/nanny. It’s amazing how one’s perspective can change so much over time. When I first heard the concept of a night nurse years ago, before I was a mother myself, I was baffled by the concept. Sooo…the night nurse helps change the baby’s diaper, burps him/her, and then helps him/her go back to sleep? Hmm…isn’t that called parenting? People in India don’t have night nurses and they all figure it out. Then, I had Diya and my mom stayed with me for two months, essentially on a 24-hour shift early on when I was having nursing challenges. I realized then that my mom was effectively my night nurse. People in India don’t need night nurses because they have the family support in place. It was then that I became pro-night nurse for anyone who lacks the support and has the financial resources to afford one. When Mira was born though, I still never considered needing a night nurse for myself. I figured we’d manage with me on night shift (Ash helping me on weekends), and my mom taking over in the morning so I could sleep in. In fact, we were managing just fine. I’m not sure why I initially resisted when Ash suggested we bring on a night nurse. Maybe it was my coupon-clipping self trying to express my middle class values. With treatment to soon begin though, we all knew I couldn’t be doing night shift throughout the week anymore. “What else would we spend our money on?” Ash asked. True.
Anyhoo, I digress. My first day of treatment involved Ash and me getting to Stanford by 7:15am. The plan for the day was to get my blood drawn at the lab so they could confirm my white cell count was healthy enough to begin chemo (this would happen before every infusion), that would be followed by an appointment with Dr. T (my medical oncologist) for a clinical exam (this would happen roughly every other week so she could assess the changing size of the tumor and discuss side effects, etc.), and then I would be headed to the ITA (Infusion Treatment Area) for the chemotherapy itself.
The day got off to a slightly rocky start. The lab didn’t have my orders for the blood draw. Only the doctor could provide that, but the clinic doesn’t open until 8am. Concern there being that if my blood isn’t drawn until 8am, the results won’t be ready in time for my doctor’s appointment, and that could potentially push off the timing of chemo as well. Not to mention that we could have been sleeping for longer. After only a little bit of stalking and some urgent email sends though, we connected with Dr. T who released the orders. Blood draw – check.
Our appointment with Dr. T was introductory as you’d expect. She conducted the clinical exam and confirmed the tumor hadn’t seem to have evolved meaningfully since last time (phew!), the left lymph node still felt suspicious, and that the right lymph node seemed to be nothing to worry about. She walked us through the various drugs I would need to be taking at home (i.e., 4 pill drugs for nausea/vomiting and a self-injecting white cell booster shot). She mentioned that patients often self-inject the shot in their belly, but that I look rather petite and so may not have enough fat there. To which Ash very matter of factly responded, “Actually, she has some extra fat in her belly from the pregnancy.” Umm…thanks Ash, we’ll be discussing that at home later.
I had many questions regarding side effects. When will my hair begin falling out? About 2 weeks after the first treatment. Does Taxol really cause your finger and toenails to fall off (vicious!)? Can happen, but is rather rare. How cautious do we need to be given the weakened immune system on a spectrum of complete isolation to continuing to live your life? This was my most pressing question given I’m naturally a social person and we also have Diya enrolled to begin preschool (i.e., germ factory) at the end of August. Fortunately, Dr. T believes I should continue living my life, but with some common sense precautions like frequent hand washing and avoidance of anyone with symptoms of a sickness. Ironically, she still feels that it’s fine for Diya to attend preschool though since the biggest driver of infections when the WBC drops is bacteria rather than viral infections, and viral infections are most common with kids in school. This advice may not apply to everyone though depending on their specific case and treatment plan.
With my questions answered, I was ready to start chemotherapy. For those of you who are like I was at the beginning of this journey, you may not actually know how chemotherapy is delivered. It’s largely various drugs that are fed by IV over the course of 1-8 hours on a weekly, bi-weekly, or every 3 week cycle for numerous cycles. My first segment of treatment would be four cycles of a 21 day treatment of weekly Taxol infusions and Carboplatin infusions on just Day 1 of each cycle. Given the frequency of the blood draws and infusions, many patients have a port surgically implanted in their chest for easier access than finding a vein in the arm each time. The port, however, leaves a 1-1.5″ visible scar when removed. Given I’m young with access to veins in both arms (since I didn’t have any surgery yet that would render one of my arms unusable for infusions), Dr. T thinks I can give it a shot without a port for now and we can always install one in later if needed. All right – let’s do this.
We headed up to the ITA and lucked out by getting a private room (vs. the infusion chairs out in the open area) – little wins 🙂 Once the IV was installed, I was given a variety of premeds including steroids (through the IV) and anti-nausea/vomiting pills. The first infusion of Taxol is the riskiest since some patients have an allergic reaction and close monitoring is required. They pre-emptively gave me some Benadryl that they warned would make me feel drowsy. They weren’t joking. I could barely keep my eyes open. They told me when they began the Taxol infusion, but I was already half asleep by then. I suddently felt a tightening in my chest and a burning sensation rise from my chest up my neck. My eyes were still closed when I voiced the pain, and a split second later when I opened my eyes, there were 4-5 nurses rushing into my room to turn off the infusion. Ash told me my face had turned bright red and the nurse had pushed the alarm. My body was having an immediate reaction to the sudden onset of toxic drugs, so they would give me more Benadryl and then we would try again.
I fell into a deep sleep with the next round of Benadryl and by the time I awoke, I had been on the Taxol for awhile, so was now safely out of allergy zone. I could barely think and kept slurring my words. I told Ash that I felt drugged, to which he pointed out that I was. It was at this time that Stanford thought it appropriate to send a social worker into the room to discuss my feelings. I could barely stay awake, wasn’t sure I was even making coherent statements, and was somehow responding to psychologist-like questions. She finally left and I was so happy to go back to sleep.
Ash had stayed busy multi-tasking during the appointment while I slept. He was cranking out work on his laptop and was scheduled to head to the airport for a work trip as soon as he dropped me home from the appointment. Given my allergic reaction and overall non-functioning state though, he made the last minute call to cancel his trip. I was so glad to have him by my side.
It was past 2pm when we finally headed home. I slept the whole car ride and then for a few more hours once I got home. Once the Benadryl (or whatever other sleep inducing drugs they may have given me) wore off, I felt great. Great as in normal. I spent time with my kids, my parents, and took a walk around the yard to keep my blood flowing. When I crawled into bed, all I wanted to do was finish updating this blog so I could send it out to my family and friends. I always was the type of person to work late into the night to finish whatever I needed to get done. It was past 3am when Ash realized I was still awake and working on my blog. He was displeased, to put it lightly, so I packed up and called it a night. I was just driven to cross sending out the blog off my to-do list. Then again, maybe it was all the steroids.