Let’s Be Honest
I’ve been avoiding writing this post for three or four weeks now because I know no one wants to read it. (No, I’m not dying. My CA-125 seems to be responding to the new chemo, although I have yet to feel any practical benefits.)
But things at the ol’ Casa Carcinista are, well, different since I got back from Colorado.
Sure, there’s the coughing and wheezing, the resting after a flight of stairs. The utter lack of an exercise routine. But I’m talking about more meta-changes.
For the past four-and-a-half years, we’ve been sailing along through open seas, scanning the horizon with our telescopes, peering from the crow’s nest at the edge of the world, looking for signs of what’s to come. For that time, there’s been no sign of anything, just flat horizon. Some days we’ve had calm seas, and picnics on the deck; other days have been stormy and I’ve stayed below decks. We’ve just kept sailing, waiting and watching.
Now, there’s land on the horizon. Distant, hazy, indistinct, but it’s there. And that’s where we’re sailing. Don’t know how long it’s going to take us to get there, nor whether we’ll change course and sail somewhere else first, but there’s no doubt of my destination.
I think what triggered this all was the realization, in Estes Park, that I was not well. For the first time, really, since forever, I was sick and not getting better. There were things that I just couldn’t do because of cancer, and the likelihood that I ever would be able to do them was small and shrinking. Even during my IP chemo routine in 2006 (the energy nadir of my life), I was able to drag myself to my best friend’s wedding as MOH and even threw down a little swing with my sweetie. Sure, I paid for it for days, but it was a hoot, and I got better. I’m still waiting to feel as well as I did before FD. (Nothing personal, FD – I still love you.)
Strangely, I’ve found these recent changes in my life almost comforting. Where the null-sum of cancer is undoubtedly the waiting, the uncertainty that comes while a surgery date approaches, or while you’re twiddling your thumbs until the scan results come back, any kind of certainty in this free-for-all can be the equivalent of a neatly solved equation, exhaling a long-held breath. As our therapist reminded us this morning, we’ve entered the last healthy step of the stages of grief: acceptance. Not that my demise is imminent, but that it’s out there, on the horizon, whether we’re sailing there directly or around the Horn first. Can you imagine setting out on a journey that will last the rest of your life and not knowing where you’re going or when you’ll get there? (And forget about knowing what to pack.) You see my point.
Even more strangely, a field of calm seems to have settled over Casa Carcinista. With this acceptance has come relinquishing of closely-held argument positions, reductions in conflicts, a willingness to compromise and see the other guy’s point of view. The little brown house is full to bursting with love. Mr. W and I are more likely than we used to be to drop what we’re doing and have a hug, or sit at the table after the boys are excused and just talk quietly about our day. We listen more closely when our kids stop us to talk. We are always available for snuggles. We are focusing on the stuff that really matters – building and maintaining healthy relationships, following family traditions, spending time together – and, for the most part, filtering out the dross.
So no, since you asked, I’m not scared. There are still plenty of things I’m pissed off about, and for damned sure I’m not anywhere near finished fighting this battle. But the cloud of acceptance and love that has descended over Casa Carcinista has made us better people, and I wouldn’t trade that for a house at the beach.
And while we are speaking of beaches... here's my favorite.
Photo courtesy Mr. Wonderful.
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Hermit Crab
I seem to have dropped off the face of the earth, rants about pinknausea notwithstanding. I’ve been trying to figure out why I don’t feel like talking right now, and it seems to come down to chemo. (Doesn’t it always?)
Starting actual chemo again (vs. a clinical trial or biologic or something) threw me for a loop. Apparently I’ve blacked out how crummy I feel after infusions, because when I collapsed into bed at 5:30 on day 3 of the last cycle, I was surprised. Mr. Wonderful said, “Don’t you remember? This is usually the time you start feeling like crap,” but I had forgotten it. Like how you swear immediately after giving birth that you will never, ever, ever do that again, then twelve months later you’re all, “Let’s have another one!”
So I spent day 4 and 5 in bed, me and the cat and the Compazine, and by the end of the weekend I started to feel like myself again. But apparently aging your body forty years in four years has some drawbacks, and I no longer rebound like I did in 2006. I’ve been having trouble just getting out from under the coughing courtesy of Estes Park’s elevation, and still haven’t resumed my exercise schedule. My lungs don’t like it, not one little bit – not even climbing the stairs, and last night Mr. W and I had a giggle at me huffing and puffing after pulling off a tight long-sleeved t-shirt.
Now I’m at The Cancer Factory for Cycle 2, and anticipating another week of feeling lousy. But why that has to send me into hiding for the next two weeks as well, I can’t figure out. I’ve turned into a terrible phone friend, forgetting to return messages and schedule dates. Some days I just drift along until it’s time to get into bed again, and that’s about all I can handle. But other days I’m doing my little suburban-mommy thing, driving and shopping and cooking and all, yet I still can’t manage to get my head out of my domestic bubble.
So I guess this column is a sort of apology, to those I owe phone calls to, or to those with whom I made tentative plans and then never followed up. It’s not you, it’s me. It’s taken me two years of therapy to be able to accept these words and feel comfortable saying them: I’m doing the best I can.
Photo courtesy here.
October is Cancer Awareness Month – Pass it On!
Awesome Ann from “Breast Cancer? But Doctor…I hate pink!” has a new campaign – check out her amazingly generous idea, and spread the word…
Wouldn’t it be fantastic to have teal and pink ribbons twined together next October? Or rainbows? The internet is a powerful place.
Pinktober from a Teal Point of View
My totally simpatico blog-sister Ann, of the hysterical “Breast Cancer? But Doctor…I hate pink!” asked me recently to weigh in on October, pinkwashing, and Susan G. Komen fatigue. Did I have an opinion I’d like to share?
That’s like asking a burning man if he’d like a drink of water.
See the results here.
How do you feel about it?
Storming The Castle
Despite my facade of bravado the night before, I woke on Thursday nervous as hell. Picture it: a woman who, regardless of recent fitness, has a lifetime history of athletic underachievement, a recent history of daily two-hour midday naps, and a bad case of altitude sickness (not to mention stage IV lung mets) spending six hours climbing a big rock and then rappelling down it again. Teamwork and awesome support notwithstanding, the potential for failure was pretty high. But then again, that’s what First Descents is all about, right? Pushing past your fears, self-imposed mental and physical limits, and getting on top of the rock.
Everyone was pretty jacked up by the time we left the lodge. The plan was to revisit the big thumb we had climbed on Tuesday, just outside of Estes Park, but when we stopped by Mary’s Lake to throw in rocks covered with our inhibitions and self-criticisms, the horizontal rain and strong winds threw a wrench in that plan. Flexibility and going-with-the-flow might be the secondary mottoes of FD staffers and CMS guides: within minutes, a new plan was formed, and we took off for the Boulder area and Castle Rock. The hour-plus drive was beautiful, and gave me a chance not only to admire more of the amazing mountain scenery but to psych myself up for the challenge that was looming over my head like a cliff. I had gotten over the whole being-carried-up-the-approach thing; now I had to trust myself, which seemed significantly harder.
Down a winding valley road just outside of Nederland, Castle Rock appeared around a corner and everyone gaped. Three hundred feet of lumpy granite rising into the air like a tower; a creek runs around one side and the road around another. It looked as if it had been set down inside a bowl, with the hills curving around it – maybe that would cut down on the wind? Whatever, it was tall, and we had to climb up it.
The campers split into two groups: the more expert climbers (Alabama, Psych, Foodie, Sprouts, DoBo, Fluff) and the less expert climbers (Spike, Clover, Milf, Caribou, Wiki, Kale, and me). Guides were everywhere, looking very businesslike, draped with hundreds of feet of rope and dozens of carabiners, talking intensely in hushed groups and planning like generals. We scattered into the bushes for last-minute bathroom breaks, and I noticed dusty chalk prints in the cracks up the steepest southern face of the Rock. Clearly, it was a top-notch climbing spot; I just hoped we’d have slightly larger handholds.
And in came the Sherpa. Nicknamed Luddite, I had gone all jittery-schoolgirl when he’d introduced himself at breakfast: 6′ 3″, strawberry blonde, broad shoulders. Now, with a coil of rope split over each of his shoulders, he was positively psyched about practicing carrying me up the approach – whether his insistence that I was doing him a favor was just blowing sunshine or actual fact I’ll never know, but who the hell cares. Check out the photos:
It was rough, I tell you, rough. His shoulders were so broad it was hard to get my arms around them. Grinning like an idiot the whole ride. You see I needed the team tiara to really polish off the effect.
Away we went, leading the north-side group like the Pied Piper. Low branches were a bit of a hazard, but fortunately the approach only took about five minutes, as opposed to the twenty-five minutes of the other rock we had planned to climb. I didn’t have long to feel guilty.
By the time we got started actually climbing, it was nearly noon. Good news: lunchtime! Warm sunshine! Bad news: naptime was approaching like a dive-bomber. Sometimes I got frustrated at the hurry-up-and-wait nature of it, each of us climbing in pairs up the pitches, but the rest time while we waited for the team to reassemble gave us time to rest and eat and drink. The guides were amazing – the spaghetti pile of two-hundred-foot ropes, carabiners, and climbers they had to belay and keep track of was staggering. There wasn’t much conversation with them, although they did pause for an occasional smile and a contribution to the ongoing “If…” book discussion. Special shout-out to Spare Parts, who worked the belay like a machine all day long.
- That’s Li’l Bits – and 40 lbs. of gear.
Each pitch in itself wasn’t that hard for me. The irony of the whole day is that I actually found myself liking climbing. It’s like putting together a puzzle: a hold for the left hand here, a step for the right foot there, and hoist! Now a right handhold, a left foothold…no? Can I brace with my thigh? Very rewarding and satisfying to the female tetris-loving brain, like watching a needlepoint project or a jigsaw puzzle turn into a whole image from the teensy mosaic pieces. There were moments where I got frustrated because there wasn’t an easy solution, but the cheering from the teammates and occasional coaching from the guides helped my confidence enough that the pieces fell into place, and I found myself flopping over the top ledge like an exhausted swimmer out of the pool.
Second-to-the-top pitch. Sherpas don't get cold ankles, apparently.
After about stage three, though, I was done. No, really. My legs were like Jell-O, my arms too tired to lift over my head. I had eaten good complex carbs and drunk plenty of Gatorade, but the burst of renewed energy was not coming. I think my body doesn’t do that anymore. But no sherpa was going to haul me up the rock. And there was no bathroom at the summit. So this is where I usually fall flat – I’m really tired, it’s time for a nap, I can’t do any more today, I’ll be in my office. Take me home, put me to bed, see you later. This day, from somewhere, I had to find the energy to keep climbing.
I just didn’t think about it, any of it. Not about how tired I was, not about how crappy my lungs felt, not about how tired I was of being cold and clinging to a rock. Not about how far my life had come from what I’d imagined it would be, nor how pissed I was at that. I just climbed. Waited ’til it was my turn, and climbed. And then I was up.
Once we were all there, it was strange – we were all jubilant, incredulous at the magnitude of our accomplishment, but exhausted. No one seemed to want to leave, whether we were all too tired to move or just didn’t want it to end. Photos were taken, jokes were told, and then it was time to go.
Rappelling was less terrifying to me than belaying; I guess I’m a control freak, because once I was the one holding the reins (so to speak) letting me down the cliff everything was fine. It doesn’t make stepping backwards off a perfectly good 250-foot cliff any easier, though, even when I’m well rested. Which I was not. And yet, I think the exhaustion quieted the jitters: by the time my jelly-legs had gotten me to the brink, and Spare Parts had hooked my harness to the ropes, I was simply so eager to be finished that I cooked over the edge and started bouncing my way to the ground.
After what felt like ten minutes, but was probably only about two, I stopped for a rest. And looked around me. The sun was setting, the shadow climbing the wall of the bowl around me. The sky was blue. No one was asking me for anything. I had gotten up and over that big friggin’ rock under (mostly) my own power, despite my misgivings. Holy crap. Then I made a mistake – I looked down. People are very tiny from that far up, as are minivans with reclining front seats. Time to get cracking.
Shoulders get sore passing handfuls of rope to yourself over and over again. Switching hands wasn’t an option, though, so I rested a couple of times. I was really cognizant of being the third one down, though, and that there were about twenty people up top who needed to follow me down. Past the hundred-foot pine tree, over the ledge, run out of footholds and swing precariously, and then hands on my waist helping me down. Done. I could barely unhook my climbing harness and stagger to the van. Seat down, feet up, pass out.
And not be able to fall asleep. As I lay there staring at the bushes outside the window, so many things ran through my head. First was, “Why the hell did I do this? I can’t believe I signed up for this nightmare. I’m so tired I’m going to die.” Next came the cascade of memories from the day: rooting for reluctant climbers; Slash’s ridiculous sing-alongs; the sunshine on all of us at the top. As I heard subsequent rappellers finishing their descents and cheering for each other in a mob, I was overcome with jealousy: at their energy levels; at their ability to stand up after that day; at the fact that some of them were over their disease; at the fact that I wanted to plan to do First Descents again and might not get the chance to. Tears of exhaustion. Frustration. Nap.
Spare Parts opened the tailgate some time later to start loading in equipment, and threw on some tunes for the assembled cheering squad – the clock said 6:45. No wonder I was zonked. It took another forty-five minutes before everyone was down and loaded. I was so excited to be driving home I could hardly stand it. Nap. Forget dinner – to bed, to bed. My pre-noon flight the next morning would probably require an early wake-up call, so I was eager as hell to check out.
Ha ha. It seems that other members of our team were HUNGRY. We stopped in Nederland at a Nepalese restaurant called Kathmandu for dinner. I was nearly in tears again at the thought of having to get up and walk into the restaurant and make conversation for an hour. Oh, and it’s buffet. Now I have to balance a plate, stand up and make conversation. Then it came to me, like a message from heaven: I. can. order. a. diet. Coke.
Caffeine, food, and chai actually dragged me out of my funk, and I completed a couple of sentences at the table. But by 8:30 I was practically herding people out the door to the vans. Slash said that once we got back to the lodge, we still had a Campfire meeting to get through, plus the awesome slideshow from the week. Bedtime? Maybe midnight.
I did finally fall asleep in the van, but it took everything I had left to pry my bod out of bed, wrap myself in a sleeping bag and shuffle outside for the Campfire. I won’t share everyone’s secrets, but it was clear ground had been broken, lifetime friendships made, personal limitations smashed.
For me, my contribution to Campfire was that the day’s heroic achievements had been so huge there was no way I could summarize them without some sleep. I said that when I woke up on Tuesday, I’d probably blow my own mind at how huge the day had been. I was seriously so drained, and the magnitude of our journey so epic, that to this day I’m still trying to wrap my head around it.
What I know for sure is that the next morning, when I had to say goodbye, it was like cutting off my arm. First Descents felt like an entire year of college, with its friendships, shared in-jokes, and constant togetherness, crammed into five days. I was so tired I thought I wouldn’t make it through security (thank heaven for first class lines!), staggered to a kiosk for a fatty bagel-egg-bacon-cheese, collapsed at the gate and burst into tears. How does one come down from a high like FD and return to the real world? The regular real world would have been hard enough, but I had to psych myself up for chemo in two days. I needed some motivation.
Memories.
Day 1: What have we signed up for?
Day 2: Post-climb chillin.
Sprouts, Spike, and Shotgun revel in the view from the top.
Day 3 mountain hike, and sweet Clover.
First Descents #53 Colorado Climbing camp, victorious.
I’ll be back.
Photos courtesy Kale, Clover, Spike, DoBo, Wiki, Wildflower, and Garçon. I forgot to take any.
Looking For Footholds
Wednesday was supposed to be easy. The First Descents camp directors had scheduled a “day off” the rocks, to give us time to recuperate from Tuesday’s fun, and to give us all a chance to hang out and have some fun (more fun, that is). I’m not sure what “easy” schedule they were working from, but the “day off” started with an (optional) drive to the top of Rocky Mountain National Park to watch the sun rise (freezing; early; stayed in bed). Next was a late breakfast after an 8:30 yoga class.
Yoga – I’ve got this one. While not a tri-weekly practicer, I’ve been known to rock a reverse triangle pose or two. I was excited to 1) stretch out my really tight hamstrings; and 2) prove I wasn’t a total slug decimated by treatments and high altitude. How the mighty have fallen: by the second sun salutation I was gasping in child’s pose on the mat. The (very inspirationally fit) instructor’s breathing directions (“Slow breath in as you rise; exhale and touch the mat in forward fold,”) mocked me, as it took three inhalations and exhalations to complete each bend.
By the end of the practice, I was in corpse pose on the mat, blinking back tears of frustration at my inability to do ANYTHING. How the hell was I going to make a multi-pitch climb up an enormous rock the next day, when I couldn’t even finish a simple sun salutation?
Fortunately, the cinnamon-bread-hot-apple-compote french toast breakfast helped quiet my concerns for a while. The main planned activity of the day was a drive (whew!) up into the Park to 12,000 feet, with an optional hike or two. Since I seemed to have reserved my seat (“Shotgun!”) for the duration, I had an amazing view as the road got narrower and less paved. It’s amazing how BIG everything is in the West. When we stopped above the treeline so the willing (and waterproof) could hike the last thousand feet to the summit, I had a few quiet moments in the van with CMS guide Li’l Bits. He asked me if I was nervous about the “graduation” climb the next day, and I admitted my suspicions about my endurance. He said, “I want you to take some time with the idea of us carrying you up the approach so you can save your energy for the climb.” (My emphasis.)
Here’s my thing. Having grown up as “the one who doesn’t do much,” I’m a little prideful about my activity level, even as a cancer patient. Voted “Class Couch Potato” in high school and known for saying, “I”ll be here when you come down” on family hikes, the picking’s been ripe with me and not-achieving-athletically. So to have people I’ve only known for three days peg me as the physical underachiever in the group, whatever the reason, stung. A lot. Having one of the staff carry my backpack up the hill, or bring an air mattress for me to take a nap (!) was one thing, but letting them take on hauling my sick carcass up the hill to the rock face? Another thing entirely.
I realized, as I found myself explaining furiously to Li’l Bits how uncomfortable the whole idea made me, that no one in this group considered me a slug. No one thought that I was slacking off the climbing so I’d have more energy to… I don’t know, nap later. The longer I sat with the idea of getting a ride (all the way back down the mountain, through the snow and incredible scenery, past rutting elk and moronic tourists), the more sense it made: this was a rock-climbing camp, and the team of amazing volunteers, staff, and guides were doing their jobs by making sure everyone in the group succeeded at getting up that hill. By letting go of my pride, I was offering success not only to myself but to the whole team. (After all, “Life is full of setbacks…“)
After a solid hour-long nap, I was ready for the team outing to the nearby microbrewery (not to mention a diet Coke and some fries. The vegan organic food was DELICIOUS, but after a while a girl just needs some aspartame and some sat fats). In the ensuing three hours (during which I sipped a third of a beer and guzzled water, thank-you-very-much), I laughed harder and more frequently than I have in at least ten years. There were pranks delivered, great jokes told, toasts drunk, patrons scandalized. And we were all home in time for (another outstanding) dinner. By which point I had thoroughly settled into my role as sedan-chair princess: I was even protesting loudly (tongue-in-cheek) that I refused to climb any simple path on the grounds that the First Descents camp was billed as a rock-climbing camp and that hiking was not in my contract – if they wanted me on the rock, they’d have to get me there themselves. During the three days of the camp, I had reached the magic tipping point (or whatever) of First Descents: these people, whom you may only have known for seventy-two hours, care not one iota what you do for a living, what body parts you are missing, how close you are to dying. What they want is for everyone to KICK ASS at the rock-climbing and for the whole team to be up there, together, at the end of the day, cheering on your teammates and reveling in your success.
My battle had become, not pushing myself past the definition society had put me into of “cancer patient”, but holding myself back from doing all the things I wanted to and had hoped to when I signed up, because the destination was more important than the journey.
Photo courtesy Wiki
Next: The Longest Day
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.
