I was recently readmitted to the hospital for my second round of chemotherapy.
I’m doing a regimen called Hyper-CVAD, which involves four rounds of two alternating cycles of treatment, for a total of eight rounds of chemo.
For my first cycle I got cyclophosphamide, doxyrubicin, and vincristine, along with an intrathecal injection of a drug whose name I’ve since forgotten. This round I’m getting intravenous methotrexate and cytarabine and TWO (insert frowny face) separate lumbar punctures to get the same drugs injected intrathecally.
For both rounds I also get a steroid called dexamethasone, which my boyfriend, Peter, now refers to, simply, as “the dex.”
He’ll tell you that when they gave me dexamethasone during my last hospitalization I got hyped up and started bossing him around to rearrange that hospital room. “Put that tissue box over on the other table! Move that chair 4 inches to the right! Organize my pill bottles on the counter!” Before I came to the hospital this time, he asked me, cautiously, “So… when are you getting the dex?”
Because of the timing of when I got to the hospital yesterday, my dexamethasone infusion started at night. I went from falling asleep to Keeping Up With the Kardashians (don’t judge …) to suddenly waking up, turning on all my lights, and feeling compelled to immediately organize my gmail folders for the next three hours, until finally going to bed at 4am. Lucky for Peter, he was at home and therefore not subjected to my dexamethasone-induced hypomania.
Before I got cancer, I had a plan. I had multiple plans. I had a 6 month plan, a 2 year plan, a 5 year plan (which I diligently wrote out on a regular basis in a color-coded system with multi-color pens, usually while listening to Tony Robbins).
After years of toiling away in medical school and residency I was finally starting to reap the rewards of my hard work. I loved working with patients. I loved reading, going to conferences, and immersing myself in everything educational having to do with psychiatry and integrative medicine. I felt a total sense of purpose and excitement imagining starting my private practice when I finished residency.
And then … bam. Cancer! What? This is going to set me back at least six months on my 3 year plan! I don’t have time for this.
Now, there’s little I can plan because there’s little I can take for granted. I don’t know how I will feel next week, tomorrow, or even later today. My mood and physical state change on a whim.
But isn’t this what I already knew, what I’ve already talked about so much in my writing? That life is uncertain, that things happen outside of our control, but that you can rest in the moment for comfort, that you don’t need to be afraid?
Recently, small things can feel like big victories or big setbacks. For example, after four days of crippling bone pain from the Neulasta injection (given to help my immune system rebuild after the first chemo round broke it down), I woke up completely without pain, with an appetite, and ate a delicious breakfast of buckwheat waffles, a fruit/veggie smoothie, and green tea (thanks to Peter, who’s taking excellent care of me).
I couldn’t stop verbalizing how happy I felt to Peter. “I’m not in pain! I just ate! I feel so good!” He didn’t seem sufficiently blown away by my exclamation. “But you don’t understand … I ate! This is amazing!” I was so happy to feel relief from the pain. I reveled in that physical comfort as if I were savoring a sweet victory.
Then the next day (yesterday), I was waiting around to hear which UCLA hospital I would be admitted to. I wanted to go to Ronald Reagan, because my friends work there and I knew it would make it easier for them to visit. But in the end there was no bed at Ronald Reagan, so they called me late in the afternoon and told me I should head to Santa Monica Hospital.
I said, “Oh, okay, no problem,” but when I got off the phone I started sobbing. I cried in the cab on the way over. I cried when the admissions woman was checking me in. I felt defeated. I felt lonely. I didn’t understand what was wrong with me, why I was reacting that way. I felt sad for myself almost as if it weren’t me, as if it were another person who I was watching suffer from some other perspective.
There are other small victories: Being told I can get my PICC line changed to a port, which is under the skin and will allow water immersion (thank you to the reader who suggested I ask for this!), feeling good enough to go for a walk, getting dressed up and going to my first party since being diagnosed.
There are other small defeats: Chemo brain (mentally, I’m definitely not firing on all cylinders), having to pee every five seconds because of the IV fluids (and because I’m on “strict I’s and O’s”, everything in and out is measured, and I have to constantly ask the nurse to empty the little plastic hat that sits over the toilet so my pee can be measured).
Oh, and in an ironic twist of fate, after I shaved my hair, it started growing back in. So not only am I bald, but I have patchy stubble that itches and acts like industrial strength velcro, gripping to any piece of cloth my head touches (hats, pillows, clothes I’m trying to pull over my head, etc …).
But you know what? I don’t f**king care about the pain. Bring on the pain, bring on the anxiety about my future, bring on the lack of control over my body and mind, bring on the (hopefully temporary?) chemo brain, bring on the velcro head, bring on the pee hat.
I don’t care because I want to live. I want to live more than I’m annoyed by the setbacks, more than I feel afraid. I’ve got something important to do, and I need to get better to do it. Maybe just by sharing what I’m going through I’m doing it. What other choice do I have?
Elana Miller is a psychiatrist who blogs at Zen Psychiatry.