I'm writing you from my sofa, where I spend an increasing amount of time (much to the delight of the cat), at the end of my second post-chemo weekend. My last update was a month ago, right after I had done the considerable work of enrolling in the clinical trial at Penn that looks at treatment with chemotherapy and the immunological agent atezolizumab vs. just chemotherapy. My first session was on January 30th and I had a bit of good luck (for a change) and was randomized to the arm of the trial that got both the chemotherapy agent and the immunological agent, rather than the control group! (That's why I look improbably happy about my IV infusion in the attached photo.)
So far, the side effects are pretty tolerable. They don't really show up until days 2 or 3 which, since I go on Thursdays, pretty much means a Lost Weekend to symptoms. There's nausea, but I'm able to manage it with medication, and then there's very intense fatigue. I said to a friend at the outset of this trial that I consider myself a connoisseur of fatigue, having suffered chronic fatigue for years that was bad enough for them to do a bone marrow biopsy to verify that I didn't have cancer. (That's how I know I didn't have it in 2016.) This particular strain of fatigue is both familiar, in that the physical effects are undeniable and demand immediate rest, and unfamiliar because I get foggy-headed in a way I didn't before. Some folks refer to memory and concentration problems they encounter as "chemo brain," but I think this is less intense, more like being sleep deprived or a little sick. Honestly, the whole package is like having a bad flu. It lasts about 5 days and the symptoms are pretty similar. So, not great. But also not the worst.
On this study, I go to Penn for treatment every 3 weeks. It takes all day, in part because when you get treated with a drug that's in trials they have to release it from the "experimental pharmacy," a process that can take multiple hours (as it did last Thursday). I'm really glad I only have to go every 3 weeks (plus visits for scans) and not every week, as I was doing before, both because it gives me the opportunity to recover from the side effects and have a bit more of a normal time in between visits.
Also, they are a huge pain.
I know that may seem obvious, since chemo is clearly a terrible way to spend a day. But the truth is that it's actually less bad than the exhausting apparatus surrounding the visit. I tend, as usual, to minimize the more distressing aspects, both to myself and others, because it's just what needs to be done and, in a situation as colossally unfair as this one, the inconvenience or annoyance of actually going to the hospital pales in comparison. But, if you're curious, here's what it's like.
A day going to chemo for me starts pretty early since Philadelphia is about 45 miles away from Princeton (basically the same distance as New York but it somehow feels longer) and since I-95 is always terrible. Driving can take anywhere from an hour and ten minutes (without any traffic) to 2+ hours (if there's an accident). So if I'm supposed to check in at 8:30am I have to leave the house ideally by 6:30--which I NEVER manage to do because I have a lifelong hatred of mornings--but definitely before 7:00. This means getting up around 5:30 or 5:45. Again, I know people get up this early all the time, but if you know me you know that I am basically incapable of falling asleep before 1am (unless I'm very sick).
So I set out on this early venture, but not alone. I have an intrepid and sleepy friend with me to drive, both because I'm not allowed to drive myself home and because parking at the hospital is such a nightmare that often I have to hop out at a corner or intersection to make my appointment time. I did, however, learn that you get completely free parking if you get chemo! (This isn't true for other kinds of appointments.) My intrepid friend will meet up with me again in the cancer center and, usually, work remotely throughout the day while we sit in a series of chairs and check in with a series of doctors. I'm really grateful for this company because something that no one tells you about cancer is how incredibly boring it is a lot of the time.
The first medical thing that happens is that the nurses at the "infusion center" (which always sounds more pleasant than it actually is, as though it should come with scented oils) access the port through which they draw blood (usually about 10 tubes of it) and through which I'll receive chemo later. After they collect blood samples, I head to the waiting room for my oncologist, who I have to check in with before I can receive treatment. We have to wait for my blood tests to come back to prove that my body is functioning well enough for me to poison it. That sounds kind of backwards, but basically I have to have baseline body functions that are good enough for me to withstand chemo. (Oh, at some point they also do my vitals--height, weight, blood pressure, heart rate, oxygen saturation--which they'll collect again several times.) I also consult with my oncologist and the study coordinator about any side effects or questions and have a physical exam of the palpable tumors.
Next, assuming my numbers look good, I can check in for chemo. Penn has private rooms, which is different from the infusion center in Princeton. Some of them have lovely views of the city and some are windowless prison cells. I've had one of each. It's just luck of the draw. But I can certainly confirm that having natural light makes a big difference. By this time I've been at the hospital for 2-3 hours. The next phase is the most frustrating, which is waiting for the experimental pharmacy to release the immunological agent, which I have to receive first. The first time it took about 90 minutes, the second almost 3 hours. Once they get that, they can finally start the infusions. I get the immunological agent, followed by pre-meds for chemo (a long-acting anti-nausea drug, a short-acting one, many others to make the process less awful by controlling my reaction), followed by chemo itself. Together, all the infusions take about 3 hours.
My total time at the hospital is something between 6 and 7 hours. The driving, total, is about 3 hours. So, all in all, it's a 9-10 hour day. I often manage to use this as a time to enjoy the company of the friend who goes with me, since how often do you get to spend that much concerted time together? Often one or both of us is working, though increasingly I get spacey enough that I prefer to read, listen to a podcast, or just nap. Once I get home, I usually nap and, hopefully, see another friend who brings by dinner. These little acts of company make the biggest difference to me. I feel somewhat bad, since my exhaustion means I'm not often up for long visits, but just having another person around is tremendously reassuring. Dropping by, or being there while I nap or read, does a lot to break me out of the isolation that I can feel by being trapped so much in the physical symptoms of my treatment experience.
Illness is very isolating and makes you very vulnerable. No one else can endure the treatment for you and, in a way, the pain and discomfort is fundamentally incommunicable. Yet the emotional experience doesn't have to be similarly incommunicable and company (or well wishes) is a major antidote to that risk. So, as I wrap up this post-chemo weekend, I'd like to say thanks for reading and sharing it with me.
Love,
Rebecca
