Sunday morning. Tea. CNN muttering in the background. My husband has made eggs with pesto. I’m going through old mail and sorting it into “recycle it” or “shred it.” The cat is snoring on the couch. It’s a lovely boring day.
Finally I have energy. My brain feels clear and crisp; I can do mundane physical tasks, even multitask. Ah, doing too many things at once. I feel like I’m back to my old semi-healthy self — yippee!
The reason for my vim and vigor is in part due to a new chemotherapy routine. What was once every week is now every three. My doc decided to switch things up because I wasn’t tolerating the chemo well and the side effects were mounting. More importantly, she was acting on a report in the New England Journal of Medicine — released only two weeks prior —that had determined that my every week “dose dense” treatment wasn’t as effective for ovarian cancer patients as getting it every three weeks.
This is how fast cancer research is changing and developing. Here we are, smack dab in the middle of treatment, and we’re course correcting based on new findings. It’s both disconcerting how little the doctors know and comforting that they’re staying up-to-date on new approaches.
The new treatment style means I get more chemo drugs in one day-long session but a lot more time to recover. As my treatment continues, the side effects stack up like heavy weights. Five lbs, 10 lbs, 20. Things become harder as we near the finish line.
But as a friend who had been through it all told me, you get familiar with the routine of it all, and you know what to expect — that alone can be a relief.
My days have become nothing but routine:
• Wake up.
• Take Glutamine powder and vitamin B6 to ward off neuropathy.
• Down 10 ml of liquid iron which tastes deliciously like vomit.
• Shoot up my stomach with Lovenox shot #1, avoiding the previous days’ bruises.
• Meditate for five minutes. Try for 10.
• Try to eat something.
• Soak infected toe for an hour — and maybe watch Orphan Black.
• Respond to emails. Do as much client work as I can manage.
• Remember to get up and move, otherwise my leg with the clot blows up like a balloon.
• Go for an afternoon walk, at least around the block.
• Do some more work while soaking toe for another hour.
• Shoot myself with Lovenox shot #2 on the other side of my stomach.
• Eat something healthy.
• More Glutamine.
Some days my week is wonderfully interrupted by my pal Stormy — a friend I hired to come over for three hours, two days a week to help me do some basic tasks. I kind of relish the possibilities of what she might help me with — mail a letter or package; pick up my medication; make me something from my food bible, the Cancer-Fighting Cookbook, that I can eat for the week; take out recycling, take me for a walk.
And it’s not just my to-do list that never seems to change. I even have my side effects down to a weekly science:
• The day after chemo, I have tons of energy because the residual steroids are still in my system. I feel fizzy and amped up, a little like someone mad on, well, steroids.
• The next two days, my energy starts to wane and my appetite is almost nil.
• I take Zofran for anti-nausea and sometimes Ativan for two to three days, plus Colace to help counterbalance the constipation.
• And then I get the hell off those drugs as fast as I can tolerate it so I can get my body back to processing.
• During the weekends, which seems to be the nadir of the chemo cycle, I’ve been extraordinarily tired. I try to eat as many iron-filled foods as I can — quinoa, salads and steak — and hope it’s enough to boost back my red blood cells and hemoglobin so that I don’t have to have another blood transfusion.
My routine and side effects have become so regular that I’ve stopped charting them. I use to fill a giant black binder with “chemotherapy worksheets” (thank you American Cancer Society) and details about my nausea, appetite, neuropathy… but after 16 weeks of this, I sort of know what’s going to happen. It’s only when a new side effect appears, like yesterday’s black-looking tooth (what the?!), that I remember to write it down.
The routine is part of the “fight.” I know, that word is eye-rolling to many a cancer patient, but in this part of the process I am definitely at odds with my own body. The chemo is essentially trying to kill everything and anything from growing and thriving, so I’m sort of constantly in a state of living death. Giving yourself some manner of control — which is frankly a total joke, but some days I can trick myself — allows you to feel a little more normal. But that ain’t livin’.
The more routine I have, the easier my treatment feels, but the more prescribed things are, the less it feels like life.
I miss the idea that I can walk out my door and anything could happen. Mo Rocca might interview me in Tompkins Square Park! A rat might run over my foot on the subway! I might spot a pigeon that looks like John Tuturro! (Real things that have happened.) Who knew it was possible to miss New York City while living in New York City.
Very rarely, when I feel really good, I walk five blocks to my office in a new Brooklyn co-working space. I can count the number of times I’ve been able to get there on one hand. Why did I rent an office space during treatment when I can hardly even go? Because it reminds me that there will be life after chemo. And for now, I sublease the two spots to two friends; one I timeshare with on a desk.
The last time I walked over there, I had some serious FOMO. As I skulked through the lounge, hat pulled down over my bald head, it was full of happy, coffee-slurping, couch-conferencing people busy doing awesome stuff. I wanted to be them again really, really bad. I made myself a tea and went back to sit at my desk for a few hours, working and nursing a nose bleed (side effect) and envisioning myself here in a few months when I feel better.
I daydreamed about chatting up new clients, having a retreat for our TueNight team, going out for sushi, running into an old friend and spontaneously deciding to grab a drink…the happenstance of no routine at all. Bliss.
Read more of Margit’s column, Ovarian Rhapsody: