I’d actually been writing around to shelters and breeders around town for the last six months because I’d been looking for a kitten to keep Shakespeare company (he’s been a little needy and despondent since our 20-year old blonde cat passed away last year.) So imagine my surprise when I get a text out of nowhere from Shakespeare’s original farmer/owner, who had two kittens she was trying to “re-home” as they were not getting along with her dog and generally causing mayhem. Would we be interested? But they had to be picked up this week. In the middle of packing up our house and moving. Ideal timing? No way. But we decided to jump because the kitten was so adorable.
So, out to the farm and then to the vet we went. We have to keep the cats separated a few days (!!) – which as you can imagine, is no easy task when we’re trying to pack up the house – and trying to acclimate the kitten (a silver-point ragdoll we have named Sylvia) AND Shakespeare to each other and the new place at the same time.
At the same time, I scheduled my octreotide test, the next step in the no-fun “cancer journey,” blithely believing it to be no worse than my previous SPECT nuclear test. Sorry, Charlie. The scheduler blandly explained the terrible procedure – involving colon prep, then a giant needle “too large and painful for the arm” which would inject a radioactive dose of the chemo drug (which “most people tolerate well” – which means 10 percent do not tolerate at all) and then three days of multi-hour scans with no movement allowed. Yeah, I get twitchy during a 30 minute MRI, so this was going to be worse. Much worse. And then I read that it probably wouldn’t turn up – as doctors had said it might – anything the MRI with contrast from head to toe I had a few months back hadn’t already caught. Hmmm. Painful, difficult, time-consuming and little chance of giving new information? Terrific!
Then I read up on the chemo itself – side effects, efficacy, stuff that was pretty alarming. For one, the standard treatment isn’t really that effective – it doesn’t shrink or disappear tumors, and can’t really even prove that it slows them down, apparently – and for some people has a load of unpleasant side effects, from weakness to flu-symptoms thyroid trouble to extreme stomach trouble. As a scientist, not just a patient, I ask myself: Will the benefits – which seem shakey at best – be worth the pain and sacrifice of time, giant needles, and possible side effects? Did I mention the need for frequent explanations to nurses, who can’t seem to administer the tricky chemo correctly (has to be done in the right place in the hip, at the right angle, and the solution mixed to the exact right temperature and texture (it clumps, hence the big needle) to work. Suddenly I don’t feel in a hurry to get either the test or chemo any time soon. (Did I mention the fact that each injection could leave a permanent, painful lump? And that’s for people who do NOT have bleeding disorders. Neat!)
Speaking of welcome distraction, I’ve had lots of visitors – artist Michaela Eaves (she did the cover of Becoming the Villainess) came over for dinner and a quick catch-up, and my brother and sister in law came over for a “meet-the-kitten-and-pizza/packing party” complete with the gift of boxes! Our phone and internet, predictably, have not been working reliably but Comcast can’t get the technician out before we move. Better luck in the next place? It’s been great to see everyone, despite the fact that the house is a wreck and I’ve been as scattered as a person can be. The weather has been beautiful, despite the fact that Glenn and I have been mostly missing out on it due to 1. packing 2. projects at the new house 3. doctor appointments. Bah! I’m hoping I get to catch more of summertime’s relaxing vibe in August…
Post more after the move! Happy end-of-July to you all! (Despite the politics, terrorism and horror in the news, vitriol in our papers…) I also recommend kittens for all dental and doctor’s offices from now on. Great therapy.
First, some good news! A thank you to Tara Betts for her shout-out to the poems in Becoming the Villainess in her Ploughshares post on the Intersection of Poetry and Comics.
So, I’ve been writing poems—even before this new cancer diagnosis—about luck. I think it’s the beginning of a new manuscript. I’ve been thinking a lot about the way we think about luck, both good and bad. Being in the wrong place at the wrong time, celebrating Bastille Day only to be run down by a terrorist, or having a scan run that incidentally discovers metastasized cancer in your liver on an ER run for stomach flu—we can’t control everything or protect ourselves from even the worst things we can imagine. Cancer was not on my list of things to do, as I may have mentioned in previous posts. But here it is.
The next step for me is a radioactive scan to find out exactly where the cancer has spread to. It also will be a good test for the main used chemo drug for carcinoid syndrome, sandostatin. (Though they are working on even better chemo drugs, sluggishly working their way through the FDA’s non-efficient system of cancer drug approval.) Then it will be a dose of monthly chemo for probably the rest of my life.
My kind of cancer, neuro-endocrine carcinoid tumors, and the associated carcinoid syndrome, is rare, but not too rare, enough to have its own foundation and studies. As a kind of cancer, it’s not curable but not fast-moving, so in a way, lucky, right? And some people with carcinoid syndrome don’t get diagnosed ’til after the autopsy done after they’re dead, so again, it’s “lucky” they found it after the seven or eight years they think it’s been hanging out in my body, causing the strange but sort of common medical symptoms (stomach pains, hives, fatigue, weight gain) that have been resisting regular treatments and confounding doctors. And now I’ll get treatments that will probably help the symptoms, hopefully more than the side-effects of the chemo will hurt me. I have insurance and a supportive husband and at least a couple of doctors who care if I live or die. Lucky, right?
An article from a Johns Hopkins study came out about a year ago that doctors and scientists and journalists alike scrambled to defy because the message was so disturbing. The message was: 2/3 of all cancer cases are caused not by lifestyle or environment or even genes, but by bad luck. (Here’s a quick rundown from The Guardian of the original article.) Well, people were outraged, because the message—that you can’t really dodge cancer by staying thin or exercising or eating right or wearing sunscreen or living in the right place—is pretty scary when you think about it. It means we don’t have control over our health—often equated with virtue in our all-American health-and-thinness-and-lifestyle obsessed culture. I mean, I’ve been eating organic and mostly whole foods for ten years and gluten-free and dairy-free for about seven of those. Did that help or hurt or do anything at all? Do superfoods just feed your tumors faster or do they help destroy them? (Luckily I have a holistic oncology-support doctor I’m seeing next week to help answer some of these questions!)
I may have some relatives—back farther than my grandparents—who died of my kind of cancer, but didn’t die young. My father, working to help develop what became the CT scan machine at Yale when I was born, was exposed to all kinds of radiation for sure, but he is still pretty healthy at 75. Lucky? I grew up in Oak Ridge, the home of a bunch of odd cancer cases and elevated cases of things like childhood leukemia and thyroid cancer, where I undoubtedly—as you can read in The Robot Scientist’s Daughter—exposed to radioactive elements in the milk, vegetables, and fruit I ate from local sources as a kid from 3-10, including our own garden in an area less than five miles downwind of Oak Ridge National Laboratories. So, was developing this cancer inevitable, part of my genes and my environmental pollutant exposure? Or was it luck?
It’s a question that probably can’t be answered. The idea that cancer may descend on us out of the blue is very frightening, that there is nothing we can do to avoid it. But I think mortality is sort of like that. We don’t get to choose or control what happens to us. I mean, we can definitely hasten things by, say, smoking meth and racing around ignoring street signs and brandishing guns randomly. (This blog does not endorse or recommend that kind of behavior. Member FDIC.) But in many ways, our ending is out of our control. Whether or not we can make peace with that idea—and we can control a lot, still, of how we respond to things like the de-humanizing world of medical treatment or people’s tendency to avoid people with disabilities or cancer, as if they are catching. or the anxiety and pain provoked by our diseases—and our insistence on being more than just the disease, on living life as engaged as we can be with nature, with other people, with improving not only our own lives but the world around us—like that little kid that started Alex’s Lemonade Stand for childhood cancer victims, a little cancer heroine if ever there was one – is what we can strive for. For now, it’s enough to just walk out in the sunshine and remember the stellar jays and hummingbirds, even the chaos of the new house renovation, are all part of the build and fall of the world around us, part of our own body and soul’s chaotic personal journey through the universe.
In the interest of lightening the mood, please look this clip, especially at 25 seconds in this montage from Community’s “Psychology of Letting Go” episode for Patton Oswalt’s take on the body as “Temple of Doom” and 1 minute in for John Oliver’s pronouncement on the human condition of knowing its own mortality:
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 5th.
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.
- Yesterday I was planning to go sign the papers closing on our new house. I was excited, except for the fact that I’d been a little under the weather for a couple of days from a bug I picked up at the otherwise really fun Poets in the Park festival in Redmond on Saturday.Then I got a phone call. The cancer tests I’d had done last week were back in. The tumor marker test for carcinoid syndrome – a type of hard-to-find, hard-to-catch, slow growing cancer that can cause, among other things, asthma, hives, stomach issues, weight and blood pressure fluctuations, and liver tumors – was off the charts high. My gastro is the one who ran these, but he’s never seen results like mine before – and he’s 70. Next step: endocrinologist and oncologist. How odd that the gastro – not any of my other specialists – thought to run these tests. How – I guess – lucky that he did?This is probably a treatable cancer, and though the tests indicate it’s already advanced (the higher the number, the more/larger tumors you have, and mine are “sky high”) I still have reason to hope. Still more doctors to go – hoping to find a really good endocrinologist and oncologist with some experience with this rare kind of tumor – and some more likely uncomfortable and expensive tests ahead, before scarier things like chemo, radiation therapy, and surgery. Of course I’m nervous, and not looking forward to the bad stuff. But…
I have several conditions – including being born with a single kidney, a rare heritable bleeding disorder, and my mystery neurological stuff – that could kill me before this cancer does. And really, who’s to say I won’t be hit by a truck or catch pneumonia again? I mean, that’s not cheery, but it is factual – none of us really knows what time is left. So I’m not despairing. I’m hoping for a few more years to hang out with my husband, family, and friends, to write and enjoy the beautiful Northwest.
All of this is to say: what weird timing. What is that joke? Life is what happens when you’re busy making other plans? Well, I couldn’t be busier making other plans – with a house to renovate before we move in, a book to launch this fall, grant applications to turn in, thinking about my next writing projects. I’d actually been feeling hopeful after the all-clear from the last round of cancer tests, ready to maybe even look for work-work again, not just freelancing. But I guess I’ll be putting that, among other things, on hold. For now I’ll just be happy to wake up and plan things for the new house, snuggling Shakespeare the cat (who has a new habit of cuddling right up on my chest when I wake up in the morning) and trying to figure out how to make life as good as it can possibly be, as long as possible. And hoping to find some great doctors as partners in fighting this.