Cancer Rollercoaster, Part 3: Things You Do After a Cancer Diagnosis and Holiday Weekends

I’m not going to lie – it’s been a stressful week. The day I closed on my house, I got a call from my gastro that the tests he had run for carcinoid syndrome – a rare syndrome caused by multiple neuroendocrine tumors, a kind of incurable but slow-growing cancer – had come back positive. I made a ton of calls to various specialists the next day, as instructed by the somewhat distraught gastro guy, and finally got an appointment at the UW liver tumor center on the 5^th.

So the holiday weekend we couldn’t get anything done on the cancer front, besides morbidly reading up on symptoms and possible treatments, and dwell on the fact that there literally aren’t any carcinoid specialists in our state. Instead, I decided first that Glenn, my husband, needed some distraction. On the way out to do house stuff on the new house, we stopped by a winery we’d never stopped into in Woodinville where they had loud live music, dancing, and a fancy food truck. It was about 72 and breezy outside, the perfect kind of summer weather where you want to stay outside all night and just be in the air with your skin. There were a ton of people our age – and older – dancing up a storm without looking or acting self-conscious. Woodinville is interesting because it attracts a mix of hipsters, hillbillies, and suburbanites in equal measure, and all of them were dancing and happily eating giant tacos and drinking huge bottles of wine at communal tables. Watching Glenn eat carnitas and drink wine (no alcohol for me! Not only am I allergic, but it’s a no-no for people with carcinoid syndrome) and swaying to the seventies-cover tunes played with enthusiasm, watching children and the flowers and the sunset over Mt. Rainier – well, it was one of the happiest, most relaxed nights we had had in a long time.

After a brief trip to the farmer’s market in the morning, Glenn spent a day tearing out cabinets and weird entertainment built-ins that no longer work with modern televisions, taking down ugly light fixtures and shower frames. He said it was therapeutic. It is a good counter to sadness to do something with one’s hands. I myself wrote a couple of (admittedly, sad) poems. Then we watched the fireworks at Carillon Point in Kirkland, where you can watch three-five fireworks shows over Lake Washington. It was cold and cloudy; my favorite part was when some ducklings wiggled by my feet on the edge of the lake in the dark, trying to hide from the fireworks.

Yesterday was my first ever meeting with a surgical oncologist at UW, after a liver panel there had gone over my file. There were five (!!) residents – fancy medical students – in the room with us. They listened to my heart, asked me about symptoms, other tests I’d had, a health history for bleeding problems and stomach issues, asthma, allergies. The oncologist – who never made any eye contact, but managed to convey some kind of optimistic reassurance nonetheless – confirmed that I had advanced carcinoid syndrome, and that was probably the origin of the 14 liver tumors, that they were indeed, as the ER doc had said back in February, metastasized cancer. He said that the cancer was too advanced and too far spread to do any surgery (plus my bleeding disorder doesn’t make that an especially great option), but that people with my condition “could live a good long time” and that the treatments he was recommending – Sandostatin, a chemo drug – could help halt the tumor growth and decrease symptoms like hives and the horrible stomach problems that have been troubling me since I lived in California – about seven years. Which is how long the doctor said I’ve probably had the cancer already. Life expectancy – I’ve read multiple accounts of this – with this cancer is usually between three-to-five years for advanced cases, with treatment, but can be as long as ten-to-twelve years. Three to five years seems short, but a dozen years seems comfortably long. I’d be…let’s see…fifty-five? Certainly younger than I’d like to die, but by no means tragically young, you know? Anyway, they’re apparently working on DNA-based targeted treatments in research, so let’s hope those are available sooner rather than later.

The weird thing is, I’ve had so many brushes with death, including almost dying of flu-turned-pneumonia eight years ago in San Diego, that I’ve sort of made some peace with the idea. I have a wonderful husband I don’t want to leave behind, but no small children who’ll be scarred by such an event. I’ve published – well, this September, it’ll be five books of poetry, which is pretty productive for someone my age, I think. I believe in an afterlife, which is comforting. I just planted lavender in the yard of my new house, hoping that I’ll live long enough to see the little clumps of purple grow into lush clouds. You’ve got to look to the future, even as you prepare for the worst. I’m not done yet. While not excited to try the chemo drugs, I am hopeful that they will help me live a fuller life while I’m here, not one dragged down by the symptoms of the cancer. Every day since the diagnosis I’ve had special animal visits – the day of the diagnosis, a heron flapped its wings about four feet away from me, then took flight; at the new house, a hummingbird hovered about three feet from my face, intent on a neighbor’s red flowers; on osprey circled over us at Carillon Point on the 4th; today we saw a Western Tanager, a beautiful rarity here.  I may not be feeling great physically or mentally right now, but I do feel that I’m being watched over.

And I don’t want this blog to be all about cancer. I don’t want to be defined by cancer. But it is part of my life – for now.

Thank you for sharing in the journey, my friends. Your support has meant more to me than you can know.