How to Be a Patient
It was still summery when a casual friend invited me to coffee for the first time; I knew it would be cancer-related. She had recently completed treatment for early-stage cancer (double mastectomy with immediate implant reconstruction) so I feared her doctors were unexpectedly recommending chemo.
"My doctor wants me to take Tamoxifen for five years, but she's leaving it up to me to decide," her reluctance was clear beyond the mere fact she called a coffee meeting to discuss it. Having taken it myself almost a decade ago, I can understand the loom of side effects. Tamoxifen covers the Top 40 hits from HormoneTown: bone pain, hot flashes, nausea, fatigue, mood swings, depression, headache, hair thinning.
A brief explanation can you skip if you know: Tamoxifen is a heavy-duty hormone therapy used in the five years after breast cancer when the risk of recurrence is highest. It operates by attaching to receptors on estrogen and progesterone that hormone-receptor cancers must use to survive. It only works with pre-menopausal women with stable levels of hormones; different hormone therapies are offered to menopausal women.
I actually didn't even start taking Tamoxifen immediately after my cancer, as I was 28 and about to marry and start a family. We had to wait a recommended two years to conceive, then had two kids in fairly quick succession to get the child-bearing over with. It was just about five years after cancer by the time I got to Tamoxifen, but I figured better late than never.
It was a challenging time to be taking hormone therapy. I had two small children and moved across the country for John's job. New town, new schools, new friends, new downsized apartment. The moods were so bad I had to go on Lexapro, which had its own set of side effects that were untenable. Between the two drugs, the effects weren't just on the side; they seeped and infected just about everything. I lasted 18 months on Tamoxifen. I took a little longer to get off the Lexapro.
Despite my own bad experience, I know that some women tolerate Tamoxifen just fine. So my advice is always to give it a try, maybe it's no big deal and you can reduce your risk of recurrence with a simple pill every day. My friend summed up her reluctance over coffee: "I don't want to feel like a patient."
After nearly 2O years of a medical issue smorgasbord — breast cancer, cervical dysplasia, basal cell carcinoma, ovarian cysts, uterine polyps, lymphedema — my first thought to myself: "Must be nice to be able to CHOOSE not to be a patient." I don't always feel sorry for myself, but when I do it's downright bloodless. I'm grateful it was just inside my head. My friend deserved compassion and good guidance.
My second instinct was to reflect on the positive parts of my years of Being a Patient. I have often felt taken care of and connected to others. In turn, I dedicated myself to being a good patient for my caregivers. I aimed to be clear and constructive, bringing completed paperwork and rehearsed feedback to make diagnosis and solutions easier to find. I would be compliant, sharp, willing and able to do whatever is needed. You want to parade a troop of residents past my bare breasts? Sure, whatever, everybody cop a good feel. I crack jokes and flirt whenever possible; I want to be the one who delights the nurses in the chemo infusion room with levity and warmth. I am still proud of the day I cracked Nurse Julia up with the Facebook jokes I harvested over the course of my six-hour infusion. I was usually someone's favorite patient, what's so bad about that?
I left that coffee date not knowing what her choice would be, and not fully understanding what she was wrestling with. We ran into each other not too long ago, at a high school musical performance, perched high up in the audience, wrapped in scarves for the chilly evening outside and suffering in the stuffy, sold-out space.
During intermission I complained of the heat and likened it to a hot flash, which led naturally to the question: Did you decide to take the Tamoxifen?
"No," she smiled. "So when I'm hot like this, I know it's all me."
Ah, it finally clicked. Being a model patient for doctors and nurses — and the friends and family found bedside — doesn't alleviate the stress and disconnectedness of the internal experience. I had forgotten the crux of Being a Patient is being at the mercy of something. Something possibly malignant, not always sinister, but definitely not benign. Lacking control, being an observer, taking a back seat to whatever is driving your bus. Not understanding everything that is going on, but enduring symptoms and side effects that take attention and tracking, all the while not knowing where the bus is headed.
Since early summer I have been caught in a web of hopefully non-cancerous issues, showing me yet again what it means to be a patient. With hormonal spikes, terrible back pain and unexpected bleeding, I have gone from primary care to ob-gyn to endocrinologist and back again to all, with x-rays and ultrasounds and bloodwork galore. I am in the unavoidable position of being my own advocate, arguing for what my gut is telling me, fighting to be heard correctly, then changing doctors midstream, frustrated by medical practice that lacks curiosity and ownership.
I'm only slightly closer to believing the next step holds the cure, and I'm still at the mercy of something I don't understand. So I gather my paperwork and rehearse my feedback, wear the paper gowns without shame, and plaster a warm smile on my face. I'll be a model, but persistent, patient for every doctor and nurse, revisiting that Facebook post riddled with puns and one-liners to remind myself that even if I'm not driving this bus, I'm still on it.