For a while I didn't have much to post and now I have too much. I completed treatments 3, 4, and 5 over the past month, there were some bumps in the road but all is on track now. I had to rely on help more these past few weeks and it can be difficult to show that vulnerability. But I also feel very connected to and cared for by my friends and family. Even a stranger stepped up and lent a hand when I really needed it.
Treatment #4 was the halfway point of chemo and the last of my doxorubicin infusions. That's the drug which absent intervention all but guarantees hair loss. The cooling cap that freezes my scalp during the IV has been working far beyond expectations. My oncologist was shocked and smiled widely at me as she ran her fingers through my hair during our last visit. The fasting seems to be contributing here, as the best-case scenario with a cold cap is about 50% hair retention (and that’s only in 1/5 women, the rest still go bald). As mine is 100% retention, something unusual is going on. Keeping my hair has completely spared me of one of the most difficult aspects of chemo, I'm really happy about this.
After that treatment though, my fainting issue popped up again. Remember when I said I would admit if chemo knocked me on my ass? Well it decided to knock my on my face instead. I had trouble writing that story out succinctly and decided to add it at the end of the post instead. The TLDR is that two days after treatment I fainted while walking in my neighborhood, landed on my face, and now have braces (ceramic thankfully) for three months but otherwise came out okay. This didn't derail anything but hurt my teeth and ego a bit.
Starting with treatment #5, I moved to a new chemo drug, Taxol, which is interestingly made from the bark of the yew tree. From what I can tell, this medication shift is both to prevent cumulative toxicity from any particular drug in addition to trying different methods of tumor reduction. The first one did work though. While we haven't done imaging, from the doctor's hands and my own the mass seems to be much smaller now, closer to 1 cm x 2 cm. The calcifications do remain outside of that, a series of small scattered deposits which form when cancer cells die and leech calcium, usually due to crowding within the ducts. Surgery is still required to remove those and all remaining cancerous cells after chemo, but it's useful information to see how responsive this tumor is to doxorubicin.
With the new drug comes different side effects. The good news is that nausea no longer presents, the bad news is that pain is added. It's joint/bone pain, what I'm guessing could be described as similar to suddenly onset arthritis focused on the largest of bones - hips, shoulders, legs, in addition to general muscle aches. The main side effect of Neulasta [the injection I give myself the day after each treatment to bring my white blood cell count back up] is also bone pain so together these drugs tend to hit hard for 2-5 days. Ibuprofen does help but mostly I distract myself. I've been playing a lot of video games… they keep my hands busy and time flies by. While my white blood cells are at a healthy level, my red blood cells and platelets are low, which mainly leaves me fatigued. I'm not going to risk another face-plant so during these immediate post treatment days I'm okay with just hanging out at home and napping a lot. The drugs do wear off. I'll wake up one morning and feel considerably different - out of pain, more awake, motivated, able to concentrate on something besides a screen or the inside of my eyelids. Every round I'm grateful for that morning. Tasting the ordinary again instead of metallic residue.
My father stayed with me for about a week around the fifth treatment. The IV day went smoothly though it is a longer infusion than before. Taxol alone takes over three hours, adding ancillary meds like steroids and anti-histamine, and then pre/post infusion head cooling, I'm hooked up to something or other for about 5 1/2 hours. Since I've also had to add ice packs to my hands and feet to prevent nail damage, the nurse loads me up on lorazepam to make this bearable for hours on end. Besides my father's company, my friend Yiru stopped by. I remember having a nice time with Yiru but unfortunately barely anything that we spoke of. I'll have to ask her for a recap. This was the first time I was really "doped up" and I didn't realize how effective those meds are. So effective that I could sleep despite the discomforts of ice and tubes spread along my body. My dad hung out with me for the days while I recuperated. He played guitar for me, ran errands, we went on walks as often as possible, and he got hooked on Veronica Mars as I binged Hulu. He helped me identify which new side effects were popping up from Taxol and made sure we did everything we could to mitigate them. It's nice to have dad around, he encourages me to work on my guitar skills and spend more time in the gym.
Outside of treatment, I've had some fantastic trips this past month too. I went up to Vermont with my friend Paul, spending a few days in Springfield in a house that really looks like it would be haunted but gives no actual indication of such excitement. We also drove a couple hours north to his family home, a farm community where he grew up and his parents still reside. Some friends joined us and we mobbed around the country roads in a Kubota style RTV, enjoying beautiful views of Lake Champlain and finding adorable 10 day old goats in the barn. I also got a tour of his company's offices in Burlington. I had previously met several of the employees and it was fun to see this start-up hub, complete with aged pool table and half finished code scribbled on the white board walls.
Then, my absolute highlight of the summer so far, was the weekend I celebrated my birthday. I turned 33 on August 2nd (as my mother pointed out, this is the coming-of-age year for hobbits), and spent the prior weekend celebrating it in the Catskills. Myself and nine of my friends rented a beautiful house on 16 acres of property about an hour and a half out of the city (if there wasn't massive traffic trying to get out of Manhattan on a warm Friday afternoon). We barbecued, sunbathed, did morning yoga, and sat around a fire pit eating s'mores. My friends are big on birthdays, and they made this one really special for me. They surprised me with a picnic layout at a drive in movie, decorated the whole house while I slept, made my favorite bbq dinner (Abe's kebabs), and even a specialty drink (Pineda's coladas). My two groups of friends became one, the first being my FiDi-bar-turned-obstacle-course-race-team group and then the four I collectively refer to as "the boys", whom I associate with Williamsburg, Art Basel Miami, and house music… these groups melded perfectly. Like, new friendships forming in front of me perfectly, very satisfying to watch. If all of that wasn't enough, Paul rented the fastest sports car I've ever driven and gave me the keys for the majority of the weekend. The roads upstate are perfect for this, gorgeously green curvy country back roads to fast straightaways where passing an under-performer is over with a shockingly brief push of the pedal. Parents do not worry, I was a responsible race car driver.
Remaining treatment days: 8/16/19, 8/30/19, 9/13/19
**The full fall story…**
7/20/19 Two days after treatment #4, I started my day with what should have been quick walk to the coffee shop around the corner to grab a breakfast sandwich and latte. I felt a bit dizzy while waiting, grabbed my order then sat at a table outside, since there were only tall stools inside, hoping this feeling would pass. I laid my head in my arms as I felt my blood pressure drop, not sure what else to do in the moment. The next thing I remember is waking up face down on the sidewalk, cheek and chin burning, a mouthful of blood, and I could tell my teeth were not the same as before, though I couldn't tell exactly how yet. A man was speaking to me as I came to and slowly put together where I was and what had happened. I turned my head and asked for him to check if my front tooth was still there, he reassured me that no teeth were missing. It wasn't intensely painful, but I was so grossed-out by the feeling of my front tooth preventing me from shutting my mouth all the way, and how I could feel the blood and street gunk coating my lips. Forgive the descriptiveness here, it helps to move these memories from my mind to this page, like a grotesque version of Dumbledore's Pensieve. Brian, as I later learned was his name, was determined to get me out of the sun as quickly as possible, this was in the middle of a heat wave and it was blistering out. I said something about being on chemo. Brian told me he was a leukemia survivor, went through 22 months of chemo himself, so he can truly relate. By this time another coffee shop patron had come out after seeing this event unfold through the window. Together they helped me inside and I sat on the floor, back against a wall, as this group of strangers rallied to help. The paramedics had already been called, the shop employees brought me cool damp cloths to place on my face, another man gently wiped the gravel and street muck off my arms. My teeth hurt, but were not as bad as I initially feared. My upper right front tooth was pushed behind its neighbors and about 3 mm lower than it was before, in the way so I couldn't get my back teeth to connect anymore. The rest were only sore and not repositioned thank goodness. That was not the immediate focus though, and it was another day until it could be addressed. The paramedics came, brought in a stretcher and wheeled me out. My rescuer, Brian, grabbed my number so he could check up on me later. They took me to Brooklyn Hospital and the ER docs did a full work up. There wasn't anything obviously wrong, the fainting was due to a handful of factors. Obviously being two days past chemo and weak, but also I had not yet taken my prescribed steroids for the day as I was trying to get food in my stomach first, the heat certainly didn't help, and lastly I didn't know how to handle that dizzy feeling while alone in public. I should have asked for help. While in the ER, I called my friend April who gave up hours of Saturday beach day time to come sit with me in the hospital. She also accompanied me to treatment #3 during which I passed out after the nurse had trouble getting the IV in. I woke up to her gently rubbing my leg and telling me I'll be okay, before I started profusely vomiting. April has really seen me at my worst and been an incredible comfort each time. I'm so thankful for her. Nothing alarming came back from the myriad tests in the ER, they gave me fluids and potassium but that's about it. As far as injuries, it could have been so much worse. According to Brian, he saw me laying my head down on the table (he had already noticed my NASA tank top, I had it on due to it being the 50th anniversary of the moon landing and his father worked on the lunar module), then I all of a sudden stood up and starting walking. I made it a few steps, looking drunk, and then fell face first onto the sidewalk. He felt the shock wave of my head hitting the pavement. But miraculously, my sunglasses took most of the impact. They broke of course, and bruised the bridge of my nose and orbital bone a bit. My temple and chin/cheek had scraped the sidewalk and were bloodied but the wounds were not deep. My shoulder, elbow, and both knees were bruised but not severely. My mouth was by far the worst of it, lip split open both inside and out, gums bleeding from the tooth being knocked so far out of place. I looked a mess, but had no headache or concussion. The ER released me and April drove me the four blocks home.
In the next few days I followed up with a dentist, it turned out that if I had gone in the same day as the fall they would have been able to numb me up and push the tooth back in place, but that was no longer possible. Since the tooth is still alive an implant isn't needed, and moving it slowly back into place is the best option. So now I have braces. I have the mouth of a teenager while also being in medically induced menopause. It's strange. Silver lining though, my teeth had been shifting since all the orthodontic work in my youth, and I will soon have a straighter smile than before. I'm even adding them to the uninjured bottom teeth to fix one that has shifted forward over the years. It will only take three months, and I got a massive sympathy discount from the orthodontist. As my friend Christine put it, we're going full glow-up for 2020.
My face and mouth healed quickly, but I was admittedly frustrated by the whole episode. I didn't see it coming. The thought that going out to get coffee was "too much" still doesn't seem acceptable to me. Other post chemo days I had 20k steps after wandering the city for hours, why this time did my body fail me? I am being more cautious now, but I wish I didn't have to be.
I did make a friend from that unfortunate experience. Brian and I met up for coffee (at an even closer coffee shop) about a week later, I looked pretty bad the first time he saw me so it was nice to correct that image. He lives in the neighborhood and works on an augmented reality app. We talked a lot about his experience with leukemia, AR technology, and the space program his father contributed to. I've met with a few cancer survivors now, and it does help. They are more comfortable speaking of the discomforts without feeling the need to express sympathy. Not that sympathy is always unwelcome, but for me, I do at times want to explain the hardships to help me process and not feel alone, but I don't like the feeling of pity. A cancer diagnosis throws the receiver into the world of the sick. From the perspective of the world of the healthy, this looks like a worst case scenario, utterly terrifying and confusing. But I have a different perspective now. I've stepped behind that sickly curtain, and in this world, I'm extremely lucky. Compared to my peers who are permanently physically limited, who will be in treatment for the rest of their lives, or who's pain never fades, pity sent in my direction seems misguided. It feels nearly fraudulent when people feel bad for me, since it looks like I get to step back out of the world where so many more are shackled forever. I know suffering doesn't need to be compared, but I am just so thankful that this isn't worse, and every emotional reaction of mine seems to have at least some basis there. I do wish I didn't have to physically endure so much, but it's going by quickly, and I like picturing who I'll be when I'm on the other side of this.