How to Survive Chemoradiation, Part 1

I could (and am) writing an entire book about this particular topic, but I was asked a few months ago by a yoga instructor if my educational background helped me through my recent (although technically on-going) struggle with Glioblastoma. Yes, the disease that killed John McCain. No, not exactly like his, mine probably developed from a prior brain tumor (it’s a long story), which means I don’t have exactly the same response to treatment he did, which brings me to point #1.

1. Your disease is completely individual to you. Your response to treatment and treatment plan will likewise be idiosyncratic. I can only really give advice that worked for me; you can take or discard it as you see fit, because everyone’s path will be different.
2. It’s probably going to be as bad as you expect. Chemo and radiation are one of the few things that really will meet your worst expectations, although possibly not at first. One thing I noticed — that I wasn’t ready for — is that each round of chemo “stacks up,” so they do get worse. I don’t know how many brain cancer patients drop out of treatment around Cycle 6 or 7, but I know of at least a few, and, in a disease that affects so few people, that’s probably enough to sway the statistics. There are entire online resources dedicated to medical marijuana (hint: don’t smoke it), but I know that took the harshest edge off of my treatment and helped me get through it. Never let anyone tell you differently or that it’ll be a breeze. Having said that, thanks to various anti-nausea treatments (including medical marijuana), I still made it through all 13 months without puking.
3. Stick with treatment. Again, I don’t know how many people drop out of treatment because they don’t want to wake up at 2 am in a panic attack; which is understandable, but with cancer, quality of life and quantity are absolutely interchangeable. If you quit treatment, it’s not like you’ll get a year of relative health and then drop dead; you’ll get noticeably worse and more debilitated until you die. Brain cancer patients have this particularly rough, because the side-effects of treatment mirror the symptoms of the disease — and they can frequently cause false positives, so there’s no way to be absolutely sure if it’s effective. Stick with it, anyway, because, even though treatment may or may not work out, we know what happens when diseases of any sort are left untreated.
4. Keep interested and invested in treatment. Make friends with the nurses; you’re likely to see a lot of them (I got weekly infusions for a year; I’ve seen some of those nurses more frequently than some family members). I’ve known patients who got dressed up for their infusions; I had a lucky shirt (given that I’m still alive, it’s a very lucky shirt). There’s no real wrong or right way to do it, but I was inspired by the line, “If your path demands you walk through Hell, walk as if you own the place.” Having said that, it is possible to get a little too psyched up about it; I was in a waiting room where one guy was dragged out shouting, “Cancer is a blessing!” I kept a blog because I was intensely aware that I would see some unbelievable, book-worthy shit. And the disease didn’t disappoint. Remaining invested in your own life — for whatever reason, in whatever way — is critical, because this disease will strip you of almost everything, and that investment will help you drag yourself through treatment. I did the High Fidelity playlist challenge (yes, I now cry whenever I hear Bruce Springsteen’s “Tougher Than the Rest”). And remember that life is cyclical; you may be getting yours today, but everyone on the sidelines will be in that seat, eventually.
5. Proactively solve problems. Even though you can get lost in the rabbit hole of “What if,” anticipating likely and realistic problems — even if it’s just staying on top of your prescription refills — and solving them before they hit or become out-and-out catastrophes can save you a lot of grief. This will also encourage you to remain interested in your story, which helps you make it to the finish line.
6. Be public. Before Susan G. Komen, breast cancer was heavily stigmatized, and breast cancer outcomes were very poor. According to the stats I learned in grad school, most forms of breast cancer now have an over-70% cure rate. Cancer in general is still heavily-stigmatized, and considered something that makes you unemployable, so most of us are forced into secrecy, or can only find post-cancer employment with advocacy groups or the non-corporate world. This isn’t some sort of gravely illegal transgression; it’s a disease caused by faulty cellular repair mechanisms (this is true), and it is an unfortunate cellular inevitability. You get a rare chance to burn brightly enough for everyone who follows to see you at your most incandescent.
7. Don’t let anyone write you off. Even though it’s not worth it to chase down any fair weather friends who might abandon you; do not let your medical team give you less than 100%, even if — perhaps, especially if — your disease is currently considered terminal or incurable. It’s unfortunate, but you’ll likely have to put most of your life on hold to deal with cancer; you shouldn’t expect anything less from the oncologists treating you.
8. Get in shape. A great piece of advice I was given at the start of this whole train wreck from my research coordinator was that there’s a direct correlation between how well patients tolerate chemo and radiation, and long-term outcomes. It’s possible he was playing on my competitive streak, but I took that as a directive to action. Later, as I progressed through treatment and started hearing horror stories from other survivors and their family members about oncologists discontinuing treatment or not going hard from minute one. I was lucky in that my physicians were not hesitant to order the harshest, most-effective treatment regimen they could. I was lucky my willpower was stronger than my queasiness or fatigue (well, sort of; I’m sleeping a lot these days), and managed to put on a dozen kilograms of muscle. Also, if you have radiation therapy, you’ll be at high-risk for strokes, clots, and other cardiovascular health, so your long-term survival might depend on getting on that treadmill 20 minutes a day. Also, a high-fiber diet will help with the most-frequent complaint of chemo: constipation. The fact that it’s also an extremely healthy diet is a delightful bonus. Even though I advocate that everyone with an “invisible illness” be more vocal about it, you can use human psychology to your advantage. We don’t like to rethink initial impressions, and if your oncologists see you as a fairly healthy person (also, if you ever catch yourself saying or thinking, “I’m pretty healthy, apart from the cancer,” you’re not alone), they’ll be that much less hesitant to pursue aggressive treatment.
9. Document everything. As macabre as this sounds, this is one thing all survivors seem to agree on; take notes, pictures, write, draw, do it all. If the battle goes ill, you’re leaving a black box of data for the next generation of survivors and researchers; if you make it, you have a record of that time you outplayed Death herself. This will also help you get in touch with your creative side, which will help develop that positive attitude society likes in survivors (I’ve been asked by other GBM patients how I have such a good attitude, and all I can say, you earn it; you get it when you get the clean two-month scan, when you six months without a seizure, when you get a clean six-month scan; everyone starts out terrified and angry; you can’t expect yourself to be positive out of the starting gate). I was initially driven by fear — most GBM patients experience “expressive aphasia” before the end, and I can not tell you how horrifying it was to contemplate that there would be a time when I might no longer be able to write or create or express myself. Fear turned into humor, as I started realizing how morbidly and grotesquely funny the whole situation was. Humor turned into courage.
10. You are not alone. These are the four critical words every survivor needs to hear, from minute one, repeat as necessary. Ask your physicians about support groups; one of the better recommendations my support group developed was to find a “cancer mentor” with a similar diagnosis and ask for their advice and help. I befriended a leukemia patient based on our age and similarly long-term treatment plan; corny as it sounds, I think of her a lot and hope she’s doing well (Hey, Sarah). And for everyone reading this who reached out to me during this process, know you have my profound gratitude, and I owe you one.