Insult, Meet Injury
I think I’ve been pretty reasonable during this hideous process. I’ve accommodated last-minute schedule changes, long-term expectation rearrangements, physical limitations, radical downgrades in physical appearance. I’ve taken it all on, maybe not smiling but resigned, and kept on going, because, really, what choice do I have?
Consider the camel’s back broken. Wednesday’s CT bad news led to this afternoon’s phone call from the clinical trial coordinator for my PI3K trial, and after a little dithering back and forth, she said that my onc wants me to start on the 21st of June. And the joys of clinical trials include really frequent office visits, which will start on the 21st and continue for the 22nd, 23rd, 24th, and 28th of June.
Astute readers (Cheesesteak) will note that that coincides with my not-widely-broadcast trip to Washington for a First Descents kayaking trip. I was really, really, really excited for this adventure; it’s totally unlike me to take on a physical challenge of this nature, and I was beyond excited to meet and make friends with the other under-40 cancer survivors on the trip. Alumni tend to refer to their “FD Families”, and I want one.
But I have to cancel. (I keep writing “cancer” – damn you, Freud.)
A quick email check-in showed that they have no other kayaking spots available for this year, although they could put me on the wait-list. I might be able to get a spot on a climbing trip in September.
Right now I’m so hopped up I can’t even conceive of this change. I booked plane tickets; bought an inordinate amount of the suggested “non-cotton” clothing. Was making peace with the fact that I’ll probably end up upside-down under my kayak and hoping I’ll have the wherewithal not to drown. I WAS EXCITED.
This is really over the top. I’ve been good; I’ve taken my lumps and (mostly) not complained. I’ve missed events, given up hope of starting a meaningful career; foregone chaperoning field trips. Gotten used to looking at the middle-aged lady who lives in my bathroom mirror, and the fact that she can’t wear high heels for more than thirty minutes. Accepted that my left leg is a whole pants size larger than my right. I’ve abandoned plans for a 5k, or the thought of becoming a decent tennis player. But I wanted cancer to give me something for all the stuff it’s taken away, and I thought that five days of kayaking and bonding with other like-minded cancer ass-kickers was an appropriate and reasonable expectation.
Apparently not.
Photo courtesy http://www.firstdescents.org
Erosion
Some days I feel like a regular person. Aside from my daily nap, I run errands, walk the dog, cook dinner, sort the junk mail, fold the laundry. Except for my goofy haircut, you’d never know I am sick.
Today is not one of those days. I’m completely drained. I’m not sure if it’s the allergies (Massachusetts is covered in green pollen) or what, but in my Pilates class yesterday I had trouble completing any of the exercises (that usually make me sweat, but not collapse). It was as if someone was squeezing handfuls of the bottoms of both my lungs. We had a dozen errands to run in the afternoon, and by the time I’d dropped #1 Son off at soccer practice, I could hardly bring myself to heave my body out of the car and climb the stairs.
This morning seems to be little better. At the gym, I had to dumb-down my not-so-strenuous treadmill workout, and still hopped off every five minutes for a water break. At the park, I felt so fatigued I wondered if I’d make it back to the car. Even the dog seemed to know not to make me work too hard, and behaved himself.
At the risk of sounding like Pitiful Pearl, I’m flat. My feet are killing me. My sinuses feel like there’s been a knife fight. And I’m noticing that despite my ability to stand up to the flood of finite treatments and surgeries and to keep on truckin’ in the battle of Me vs. Ovarian Cancer, I’m wearing away, little by little, in the face of a slow trickle of endless chemo and side effects. Is it the Cytoxan? Is it the tumors? My lungs feel funny – is it the metastases? I can’t say, at least not until my next scan (5/19). But it’s getting harder to pretend I can do it all in the four hours a day I seem to be able to stay out of bed.
Gee, I might have to add a morning nap. That’d be terrible.
Photo courtesy http://www.reallynatural.com
Swimmingly
I’m not sure what it is about swimming that appeals to me. Probably not the part where you have to wear a bathing suit, although it’s hard to get a decent tan fully clothed. (That’s a whole ‘nother post, that one.) And it’s probably not the part where you get all wet and your hair goes nuts and your makeup washes off. (Gee, now I sound like a high-maintenance princess.)
I was on the swim team for years. Not fast, usually last. Practice went on forEVer, and you can imagine how appealing that was to the Class Couch Potato. I still wonder whether the only reason I did it was to keep my family from pestering me about never getting any exercise.
But I love to swim. In a lake, in a pool, in a river, in the ocean. The best part is swimming underwater as far as I can, trying to make it to the other end of the pool in one breath. Something about the isolation, the peace of the water bubbling past my ears, the dolphinity of the whole experience really zens me out. The blue of the pool, or the dark coolness of open water.
And then there’s snorkeling. Last week, after absent-mindedly skirting around the reefed edges of the cove beach where we were staying, Mr. Wonderful and I rented sea kayaks (!) and took the boys for an adventure to a small cay about a mile off the shore. When we had beached the boats, the boys and I explored the beach and the Custom House ruins, while Mr. Wonderful explored the apron of coral that wrapped around the south side of the cay. After half an hour in the water, he came ashore, handed me the fins and mask and said, “You won’t believe this backyard treasure.”
Compared to the anemic reef left on the mainland, this was like comparing the zoo to the African veldt. Huge schools of fish, forests of healthy coral, herds of black sea urchins gathered under overhangs. Riotously colored parrotfish crackling nibbles of algae and making sand of old reef. Angelfish the size of manhole covers. And all the while, the gentle sway of the waves and the quiet of my breath in my ears. I was overcome with the simplicity and peace of the scene, the utter irrelevance of humans to the intricate relationships playing out below me.
I stayed in the water until my goosebumps had goosebumps; giving up was almost unbearable, like leaving a loved one for a long journey. I could have gone back in and stayed for days, but we only had the boats for three hours. I didn’t snorkel again during the last three days of the trip – I guess I didn’t want to be disappointed if the next reef didn’t measure up. But the pool opens in two weeks…
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There’s no way to capture an experience like that on film or video, so I’m sorry I can’t share it with you. Do you have a favorite meditative place?
The cay is on the right side of the photo. Best snorkeling ever. Photo courtesy http://www.maho.org.
Cynics Don’t Do Laughter Yoga
Went to a great conference at The Cancer Factory on Saturday, for survivors and patients under 40. The vibe was good, the kids were hip, and the morning session I went to, on Mindfulness, was fabulous. Bagged lunch eaten and new friends made, we shuffled back into the main meeting room for the first session of the afternoon. Laughter Yoga. Now, I’m all about laughter, as you can probably guess from various posts herein, but I’m afraid I’m better at laughing at people than laughing with them.
Our enthusiastic moderator started us off with a quick description of the restorative and oxygenating power of laughter, and the history of Laughter Yoga, which started at a clinic in India and has now spread to Laughter Clubs all over the world. (Look for one in a neighborhood near you!) Apparently, even fake laughter can raise your mood and improve your breathing and outlook on the day. And lord knows I tried. But she had us getting up and walking around the big open chair-circle (never my first choice) and running up to each other, pretending to shake hands with an electric clown-buzzer while making eye contact, and laughing uproariously. Sort of fake-it-’til-you-make-it laughter.
I’ll admit it was sort of goofy at first, and the bizarreness of it all got me to laugh a few times. She let it go for three or four minutes, then we returned to our chairs for a breathing exercise and wind-down. Aaaaaaaand then she explained the next mock-hilarious encounter for us to enact in random pairs. And on it went. The second exercise I definitely wasn’t trying as hard. By the third, I was out. Sat in my chair and felt the eighth-grade-wow-this-is-so-lame vibe creeping up over the back of my neck.
I was a leeeetle bit jealous of the folks (a smaller and smaller selection of the whole for each subsequent farce) who were still participating, as their personal insecurities/strange-o-meters were low enough that they could whoop it up. But the longer I sat there watching, the less I felt like laughing, and the more I felt like leaving. I was comforted by the sight that I was not alone in my unease.
Am I immature? Or was it just naptime and I had run out of cancer-fighting pep for the day? Probably both. All I can tell you is that I could practically feel my blood pressure inching upward, until the leader finally congratulated us all on our spectacular job and we closed our eyes for a few more deep breaths.
It certainly wouldn’t be a club I’d run out to join to help me relieve stress. Color me snide.
Mercurial
The weather has an inordinately strong effect on my mood. For as long as I can remember, it seems that a sunny, warm day brings out my doingest, most optimistic and energetic self; grey and cold, especially rainy and cold, drive me underground with a furrowed brow and a short temper. According to my therapist, this is giving too much power over my life to the vagaries of Mother Nature, especially here in New England – you know, “if you don’t like the weather, wait ten minutes.” I should be much stronger than giving up a potentially good day in the face of crappy weather. Not to mention that this puts me in a pretty foul mood from, say, January through April.
Nonsense, I say. Ask Louis Armstrong: when you’re smiling, the whole world smiles with you. Why shouldn’t the weather affect us the same way? I understand that I should be able to keep a civil and patient (I’m thinking specifically of my reactions to the short people in my house) tongue in my head on a truly gale-ful day in February, but I think it’s okay to grouse about it, too.
Potentially this has more to do with my dog-walking habits than any other reason: he and I have established a (lucky dog!) schedule wherein we spend 45 minutes to an hour every day in the local state park, a hundred-acre wooded and fielded dog’s paradise that could possibly give Mt. Washington a run for its money as the windiest place on earth. We’ve been there on hot days in the summer when you couldn’t stand to go outside after 10 AM, and on blustery days in winter with eighteen inches of snow and howling northwest winds, when I wore nearly every piece of clothing I own. But once in the woods, even on the snowy days, we find so much peace and quiet and kumbaya-good-for-you-hug-a-tree-nature that despite my hothouse-flower disposition I keep coming back.
Good excuses for my weather focus abound: neuropathy makes my hands and feet ACHE unbearably in the cold weather. I’ve gotten so temperature-sensitive that long underwear are de rigueur on any day below 40 degrees. But the less time I can spend at the park, the rammier and more annoying the dog acts for the rest of the day. So we go.
I imagine that, before our climate-independent lifestyles developed, before we slipped from warm house to warm garage to warm store and back to warm car, when you had to leave the house to do just about everything, most people felt better on days when they didn’t have to rub the ice off the seat in the outhouse. When being really cold was a bit more life-threatening than just needing an extra four ounces of latte on the next Starbucks run. So call me a throw-back, but I’m going to stick to being temperature-sensitive. I’ll try to maintain a civil tongue in my head, even when it’s freezing out.
My family, it must be said, are very excited that we’re having a warm and early spring.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 