Hosed

March 10, 2011 at 11:26 AM (Energy, Treatment) (, , , , , , , , , , , , , , )

Quickly, before it falls off the current-events list: The Carcinista’s Oscars Red Carpet Review! Who hit, and who missed? Which actor had the worst tux? And, most importantly, how many collagen injections has Nicole Kidman gotten since the Golden Globes? Stay tuned, faithful readers, for the latest…hot…umm…news…

Hmm.

It appears I have missed a few days on the calendar. Where on earth have I been?

Riiiiight, sick. Started last Monday with my crack-of-dawn PleurX catheter insertion, followed by a surprise night admitted to the hospital. They wanted to drain me for 24 hours, then get an X-ray, so I spent the WORST night of recent memory not sleeping for more than 45 minutes at a stretch (roommate fell asleep with TV on; nurse turned it off; finally fell asleep, then shift-change vitals check; took 2 nurses to untangle my hoses so I could go pee, etc. etc.). I swear, those women get paid by the depth of the shade of the dark circles under your eyes the day you leave.

Tuesday I was raring to go home, and after some false starts (and one out-of-order X-ray machine), they sprung me, and Mr. W dragged my carcass home for a nap. Pain was under control with Dilaudid, left lung had been drained; I was tired, but SuperMom was in da house and taking care of business for me. I slept well, ate little, thought I was recuperating.

Went to see my oncologist (Dr. A) for a treatment revision on Thursday morning. Cancel the clinical trial, start chemo again. This time: Navelbine (“nav-” as in “navigate”, “-bine” as in “coffee bean.” It’s Fransh). All members of the team were “go” with the chemo; we’d start on Tuesday, no waiting. Great – I love a plan. Home to rest for the weekend.

I felt so decent (i.e., not in pain) on Saturday morning that I decided it was time to quit the dilaudid. I had started to get twitchy at the end of my four-hour dosing schedule, and I hate that. I thought Tylenol would get me through, with Tylenol PM for the evenings. Ooooh, was I wrong.

I lay awake twitching most of Saturday and Sunday nights, moving from the bed to the couch and back in search of a comfortable position. (I’m a side sleeper, and once my right side gets bored, I usually rotate. Only I had this big hose hanging out, and two incisions. Ow.) I tried propping my left side on pillows; lying flat on my back; lying on my stomach with pillows propping me up. Child’s pose. Happy baby pose. Nothing was comfortable. Not to mention that I felt like I wanted to crawl out of my skin.

Fortunately, when my home nurse arrived on Monday morning, she chided me that it was “way too soon” to stop taking pain meds. Thank heaven. Took a big, fat Vicodin and a three-hour nap. But you can’t take narcotics and drive, so…

…When I arrived at The Cancer Factory for my new chemo on Tuesday morning, I was pain-med free and eager to talk about it. My fantastic NP was so empathetic — the first thing she did was order me a quick-acting (and quick-ending) dose of morphine so I could relax. Then she set up an appointment for next week with the pain-management and palliative-care specialist doctor to work out a plan, which will probably include a Fentanyl patch for 72 hours of continuous relief.

Stop freaking out — “palliative” doesn’t necessarily mean that I’m on the way out; it’s a specialty that focuses on the quality of life of patients with chronic illnesses, and on easing their pain issues as manageably as possible. I can work with this doctor for YEARS.

So, short story long: lung tapped and putting out about 25cc (3 Tbsp.) every other day. Tube uncomfortable, but tolerable with Oxycodone and Tylenol. New chemo is okay (side effects: constipation [woo hoo] and fatigue [oh, yes]); I’ll get it once a week provided my blood counts stay healthy. Dragging the oxygen hose around my house is like a bad Keystone Kops sketch, what with the 50 feet getting wrapped around the dog, the kids, my legs, stuck in doorways and over dresser drawer knobs. And despite advice, I have yet to Beadazzle my Casino Canister (thanks, Pateeta!). Possibly I will wrap it with feather boas. To match each outfit.

And we watch and wait. Hope you’re more patient than I am.

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This Is the Droid You’re Looking For

February 24, 2011 at 5:51 PM (Energy, Treatment) (, , , , , , , , , , )

Oh, it’s been an interesting week. I know I’ve been quiet, but I really can’t bring myself to clog the ether with the neck-snapping back-and-forth that leads from one mile marker to the next. Now that the dust is settling, I’ll net it out for you.

Two lung taps; one three weeks ago, one yesterday. Not much fluid, but it made a difference in my breathing. (It sure didn’t improve my blood pressure — the first appointment, I waited over two hours; yesterday — three-and-a-half.) But as soon as I left the hospital last night I started coughing and couldn’t stop; when I called my medical team this morning, they prescribed Cipro against a possible infection, and home O2.

This is an image I’ve been avoiding since I first heard my lungs had metastases: the feeble little cancer patient, stooped and dragging her green canister around with her, unable to do anything. I knew it was out there, somewhen, but didn’t think we’d get there quite so soon.

But vanity must fall to the ability to breathe (and talk — I could barely talk!!!) And so, this afternoon, R2-D2 moved in.

37 liters of fun. And no, it's not a kegerator.

That little beige guy on the right is the portable unit, thank heaven. So I can shop without dropping. Or dragging my little-old-lady tank cart behind me.

I’m now breathing 2 liters per minute of pure oxygen. I suppose I should be grateful — don’t people pay big money for this service in nightclubs all over Scandinavia? I’ll let you know if my wrinkles disappear.

Also, on Monday I’ll be getting a pleurex catheter, a permanent installation between my left ribs with a little catheter that coils up and gets taped to my side. That way, I can drain my OWN lung when it needs it, instead of schlepping downtown and waiting all afternoon. Downside: no swimming. Ugh.

I also might be changing treatments, going back to one of the conventional chemos I haven’t tried yet: navelbiene (I know, it sounds ridiculous) or hexalen. I’m disappointed that my trial isn’t doing a better job; the first six weeks were so promising! I must have MENSA-smart tumor cells, so clever at adaptation that they can outsmart any new therapy within two months. I wish there were an application to take advantage of all this primal smartitude: discovering the key to nuclear fusion, balancing the federal budget, finding Jimmy Hoffa…

…curing cancer…

Photo credit: The Carcinista

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Am I The Only Cancer Patient In A Hurry?

January 31, 2011 at 1:57 PM (Energy, Funny, Karma, Real Life) (, , , , , , , , , , , )

WARNING: The following blog post contains a fair amount of selfish kvetching.

Last Friday morning, I had a CT scan scheduled for 12:00, which meant I needed to arrive for my delicious contrast (don’t forget to ask for Gastrografin in Crystal Light instead of the thick banana shake!) at 11:00. Now, as frequent readers will surely recognize, this runs into my inviolate naptime of 12:00, which allows me to get up at 2:35, get a parking place in the pickup line, and get my kids when they’re sprung at 3:00.

In the spirit of taking the bull by the horns, I left home at 9:45, which would normally get me to The Cancer Factory by 10:30 – nice and early, in hopes of pushing the whole process forward a little and getting me home for some vestige of my dear, sweet slumber. (It didn’t help that the cat was snoring peacefully under her paw and the furry nap blanket when I left.) Unfortunately, the universe had other plans.

Traffic was a nightmare. Pursuant to our drubbing of snow in the recent weeks, there is nowhere to put it, any of it. Thus people pulling off the interstate were unable to find parking places, meaning surface streets were jammed. As a result, the interstate was jammed, too. FOR EIGHTEEN MILES. So my quick little jaunt in town got me to the radiology department promptly five minutes late for my 11:00 appt. Thus I started my contrast drink at 11:15, and didn’t get my scan until 12:30.

While I sat and sat and sat and sat waiting for my scan, I couldn’t help but notice that not only did everyone else in the waiting room have a friend with them, but they were all placid and peaceful and walking slowly. I, on the other hand, was tapping my foot, looking impatiently down the hall, and checking the time repeatedly (why? So someone would notice and move me up the list? Bitch).

I was starving (and fuming about how I wouldn’t get home until 1:30) by the time I left, but as they’ve recently opened the new treatment building here at TCF, the cafeteria had moved there and it was too far to go for food; I’d have to wait until I got home.

And the people in front of me as I was leaving the building were walking too slowly. And the nice attendant who showed me how to use the new parking pay-station was helpful but clearly not going anywhere. Neither were the parking attendants who made me park FIVE floors underground, even though there were plenty of empty spaces above that. Neither were all the twits who were obviously out for a lunchtime scenic drive as I was trying to get back to the highway.

I know that most cancer patients tend to be older people, often retired, and that they have nothing to do that day but their appointments and possibly some liver ‘n’ onions at the Early Bird Special. I know that cancer patients, whatever their age, are worn-down and tired beyond comprehension. I know it’s uncommon to be a five-year cancer warrior who has to pick up her elementary school kids but sneak home for a nap first. I know that I’ve had a bit of a speed-demon issue (stop laughing) since I first learned how to drive. But seriously, I don’t have time to waste in traffic anymore! I can’t shuffle slowly into the elevator and whistle cheerfully while it hits every. floor. on. the. way. down. My life is SHORT, people, and I think I oughta get a special sticker or a dome light or something, at least a special parking place, to indicate that while I am a cancer patient, I’m also BUSY, and way too cute to be stuck in this hospital any longer.

At least I had a good excuse all lined up for the statie who never pulled me over: CT contrast creates a vigorous urge to be near your home plumbing. NOW.

****************************************************************************

Oh, the scan results? STABLE DISEASE. A little fluid around my left lung, but only 10% tumor growth since 12/15. I’ll see a thoracic surgeon in the next 10 days Thursday to see about tapping the fluid, but it appears that the drug is doing SOMETHING. I’ll take it.

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A Hundred Gs, Part III

January 26, 2011 at 3:52 PM (Energy, Family, friends, Help, kids, mommy guilt, Real Life) (, , , , , , , , , )

(A Hundred Gs, Part II; A Hundred Gs, Part I)

Last week when I met with my therapist, I landed on a theme that keeps coming up for me:

GUILT.

I feel guilty that I’m putting my family and friends through the stress of having to deal with my illness. I feel guilty when my mom drops everything and comes to town to run my life for a few days when I’m having tough treatments or procedures. I feel guilty asking people to stop at the store for me because I know how busy everyone is already, without having to do my stuff, too. I feel guilty when my husband gets home from a busy day at work and then cleans up the kitchen and does two loads of laundry while writing business emails and presentations and I sit on the couch watching Hoarders. (Those people are nuts — look how normal my life is by comparison!)

I know, I know. It’s ridiculous. There’s nothing I did to bring on this disease or its side-effects; guilt is useless. My life “is what it is”, and everyone does what they need to do to live with it and help us all get through it. No one feels that I’m taking advantage of them, or being lazy so I can lie around with the cat and nap all day. Why am I so wrapped up in the guilt?

I’ll break it down a little: I feel guilty because I feel like I’m not pulling my weight. I feel guilty that my disease is making other people make changes in their lives that, if I weren’t sick, they wouldn’t have to make. I feel guilty when, for example, they shower me with Christmas cards and mad money, because “normal” people don’t have that happen to them, and why should I deserve it any more than any other stay-at-home Mom who’s working part-time and keeping a household running? (Which I’m not even really doing much anymore.)

And (here’s the really ugly part) I feel guilty that my husband and kids are going to have to deal with life after me. Not this month, hopefully not for a few more years, but they WILL have to deal with it. And I know they’re resilient, and we’ve laid good groundwork for sharing emotions and feeling strong and loving themselves and coping with bad stuff, but every time I think about “my mom/wife died of cancer” it makes me crazy. Like, life is hard enough to be a kid/tween/teen without that baggage added to your cart. (At least they’ll have something to write about for their college application essays.)

What’s the solution? I know (and hear from others repeatedly) that my guilt is wasted. No one places any of this responsibility on my shoulders. No one thinks I’m being a manipulative slug. And life is like this: just when you think you’ve got everything under control, something goes all catty-wumpus and you have to readjust. Do I just “get over it”? But I’m a mom, guilt is my JOB.

I think it has to go back to my last post: change the guilt to GRATITUDE. Gratitude that I’m still here, despite the odds. Gratitude that I have such a supportive and energetic family. Gratitude that my friends aren’t sick of hearing about Sarah’s Cancer after nearly five years. Gratitude that I still have such a good relationship with my mother that we don’t kill each other after 48 hours (and Mr. W does, too!). Gratitude that we have thoughtful neighbors with snowplows and -blowers. Gratitude that I can still put on every stitch of clothing that I own and take the dog for a walk in the freezing, snowy, beautiful woods. Gratitude that I live in Boston and have access to the most cutting-edge treatments that have been saving my life for months now. (I’m such a proponent of dump-anything-that-is-a-waste-of-energy (i.e., “Why ME????”) that this should be easy.)

Gratitude that anyone out there is still listening!

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Creeping In

December 14, 2010 at 11:26 AM (Energy, Faith, Treatment) (, , , , , , , , )

Wow, this cancer is serious business. By my calculations I’ve been off of chemo for just three weeks, but I can feel things growing in there. A knot of lymph nodes in my neck that had gotten smaller during chemo is getting bigger again, and is now, literally, a pain in my neck. The pelvic tumors, which were actually responding to the chemo at first, are growing again and pushing on my left sciatic nerve. And, most disconcertingly, I’m finally understanding that classic ovarian-cancer symptom of “a feeling of fullness or inability to eat” — most of the time, it feels like my dinner consisted of six or eight large bricks. (Don’t worry; I’m compensating for the lost calories with french vanilla ice cream.)

So, is this the part where I start complaining? Maybe. I’m trying to keep my mouth shut around the house, because I know how upset it makes certain-members-of-my-family-who-shall-remain-nameless. And we’re all trying to keep our eyes on the prize: I’ll start this trial next week and the drug will do a bang-up job of knocking back the cancer’s growth and all my symptoms will fade.

I must admit, though, the cynic in me is starting to get up a good head of steam. The hope is still there, the belief in miracles, the willingness to place my life (again) in the hands of one of the most capable medical teams in the country. But combined with the respiratory stuff that’s been going on since the end of September, these new symptoms are stark reminders of just how close to the edge I’m riding these days.

In August, I asked my oncologist (one of the foremost experts in the field) to be honest with me. I said, “I know doctors don’t like to make prognoses, and I promise I won’t hold you to anything you say, but you have a lot of expertise with this disease, and I need to know. If I stopped treatment today, how long would I have?” (A part of me couldn’t believe I was asking this; I have spent so much of this illness focused on the fact that I will get better that even broaching the question of not was a shock.) She told me that I’d have about six good months, and around a year altogether. At the time, I thought, “Well, thank heaven I’m not stopping treatment. I need WAY more than a year.”

Only none of the damn treatments have worked. Do I have six good months left? The cynic figures I’d better really enjoy Christmas this month. Like, REALLY enjoy it. And then the hope side chimes in, “People have been sicker than you are now and recovered. Miracles happen every day.” Yeah, but they don’t, too. People who were diagnosed after I was are already dead. Maybe I’ve already used my miracles — IP chemo, my crazy HIPEC surgery, my previously stellar fitness level. That 35% five-year statistic wasn’t threatening to me a bit until about three weeks ago. Now I’m wondering about May. Whether I should have had a 39th birthday party. Whether it’s worth buying a new pair of flat-heeled black boots.

Though I’ve been sick for four and a half years, aside from acute times like post-surgically or during chemo, I’ve been able to live a relatively normal life. But now, I can’t ignore it anymore. Now, there’s always something.

photo credit here.

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Hermit Crab

October 19, 2010 at 6:07 PM (after chemo, Energy, Family, friends, Mood) (, , , , , , , )

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.

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Photo courtesy here.

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Storming The Castle

October 7, 2010 at 10:30 PM (Energy, Family, friends, Help) (, , , , , , , , )

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.

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Looking For Footholds

October 1, 2010 at 8:12 PM (after chemo, Energy, Faith, friends, Help)

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

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Catching My Breath

September 27, 2010 at 7:49 PM (after chemo, Energy, Faith, friends) (, , , , , , , , , , )

Of course I didn’t sleep well on Saturday night. What with the day being exhausting and the nervousness about missing my flight and the excitement about First Descents finally being here, I maybe strung together three hours of sleep. Just the way to start four days of exhilarating physical exertion, right?

Our group of thirteen campers found each other at the baggage claim area of the Denver airport in two shifts with the help of the very enthusiastic camp director and EMT volunteer. By the time I rolled up, some of the campers had already nailed down their nicknames and were admonished to use them exclusively, but their first stabs at a name for me (“Starfish!” because of my earrings) didn’t feel right. I wanted a perfect fit; there is a chance I’ll be using this nickname for years, and just-okay wouldn’t do. I knew it would have to come up organically, so I waited.

First Descents camps assign everyone a nickname upon arrival to distinguish the camp experience from the real life that many of us would like to forget. Camp is the opportunity to rise above your definition of yourself as “cancer patient” or “cancer survivor” and simply to be the person you are that week. You don’t have to be anyone’s mom, kid, wife, husband, sister, friend, co-worker; just yourself, an incredible sense of freedom. Not to mention a really easy way to remember the names of twenty new people at once.

Six of us plus Patch, the FD EMT volunteer, made our way to the short-term parking lot and a rented van in which we’d ride the hour-and-a-half to Estes Park. I’m not sure where the immature urge came from, but my competitive-sibling gene forced me to shout, “SHOTGUN!” by the side of the van. Hey, if no one else was going to call it… The nickname was found. (And, when discovered later by members of my family, confirmed as unassailably perfect.)

The first night, following my well-deserved nap, included an up-to-the-minute personal medical review with the staff and medical team (during which I filled them in on my fevers, lungs, and failed clinical trial), a delicious vegan organic dinner with the other campers, staff, and guides, and trying to remember everyone’s names. After icebreaker games (flashbacks to freshman orientation) and a rundown of the next morning’s plans, everyone drifted off to bed.

Monday morning, excitement made it easy to wake up and get ready to go; my new gear was shiny-clean and primed for action, and the two-hour time difference meant I had even had a decent night’s sleep. The altitude was having an impact on my breathing, though – at 8,500 feet the atmosphere contains about 35% of the oxygen it does at sea level, and I huffed and puffed climbing a flight of stairs or completing a sentence. Being winded made me nervous about the rock-climbing: how much would I be able to do? Would my fitness level and push-ups training make any difference?

The training climbs were planned for a rock formation not far from the lodge, within walking distance (coolers of food and drinks! folding chairs!) from the parking area, and the campers scrambled up to the base, eager to get started and afraid of how we’d do. The gusty wind made it hard to hear the instructors’ careful lessons on knot-tying, belaying, and checking our gear – I found out we’d be belaying each other; somehow that made it more scary than if the instructors had been directly involved. I hadn’t grasped the importance of the trust between teammates, the one climbing up and the one keeping watch at the bottom – when I climbed, I was in control, even though the belayer was watching my every step and keeping me safe from falling. But once it came time to belay back down (to lean back at a 90-degree angle from the rock and hang by my harness from the rope and pulley controlled by my belayer on the ground) I was terrified. You want me to what? Walk backwards off this cliff hoping that my brand-new best friend is paying attention and holding on tight? All the 40 feet back to terra firma? Holy crap, what was I doing here?

BAM, the magnitude of where I was and what I was doing hit me. I was up on the side of a rock, in a city and state I’d never been to before, surrounded by people I’d only known for eighteen hours cheering me on and hanging my butt, literally, in the balance. Cancer patients put their trust in doctors, nurses, family members… people we’ve known for years, interviewed carefully, background-checked. Who were all these campers? Ultimately, I think it was this overwhelming unfamiliarity that helped me sink into the new, delicious abandon of trust, tip myself over the verge and bounce backwards to the ground.

The cheers and support of my new best friends made all the difference that day – they helped each of us to climb past our personal insecurities and to back down to earth again over and over. As we rooted each new climber to the top, as we spotted belayers and checked everyone’s gear before a new climb, our reliance on each other and our shared triumphs hitched us all to a common purpose that WASN’T cancer, and that felt really, really good.

After lunch in the sun I tried a tougher climb, but about halfway up the altitude and the fresh air and physical efforts conspired to stop me – other campers later spoke of watching me “hit the wall” on the side of the rock face – and I cried, “I’m done!”, belayed down and headed for my chair for a nap; I knew I was finished for the day. I dozed in my chair for an hour or so, then the concerned doctor gave me a ride back to the lodge and my bed around 2PM. As I slept more, my headache grew. I wanted to take some Tylenol to kill the headache (it couldn’t be dehydration, as I’d had about two quarts of water since we started climbing), but was feeling nauseous and knew I needed to eat first so I wouldn’t get sick. Vicious cycle – I dozed off and on for about two hours until Clover came to check on me and I asked her to get the doctor. Hack finally showed up and gave me some Zofran for the nausea and some Diamox for the altitude acclimation, and forced me to eat yogurt. The food helped me get down some Tylenol; that and some more napping wiped the headache clean. Turns out all that water is nothing for a day of exertion without some salt: should have been Gatorade and a bag of chips. Lesson learned.

By 6:30 I was able to get up and have dinner with the crew, and felt better enough to join the after-dinner “campfire” session to talk about the day and how much fun we each had had, and how proud we were of our accomplishments. And to enjoy the dynamic that was developing – the personalities were linking, meshing, overlapping, and we were getting comfortable enough together to start making fun of each other, the true test of friendship. Things were starting to get good. My addition to the evening’s observations was that FD staffers and volunteers are TOTALLY as cool as the hype I’ve heard about them – their enthusiasm was contagious from that first moment at the airport.

Next: Overestimating my abilities…

Photo courtesy: Wildflower

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Fresh Horses

August 31, 2010 at 8:37 PM (after chemo, Energy, Research, Sleep, Treatment) (, , , , , , , , , , , , )

Sorry I’ve been so quiet lately. The Magical Mystery Drug has been doing a number on my stomach, and between napping to kill the heartburn and napping to kill the grouchies, I’ve been a little hard to engage in conversation.

Last week’s Monday visit was a bit of a surprise. Although in hindsight, I sorta knew there was some news coming down the pike, seeing as how I waited FOUR AND A HALF HOURS for the results of my CT scan. The news is: lung mets don’t like the Magical Mystery Drug anymore, and they don’t want to play. They’re going to keep on growing the way they want to, and pfphthbpbhpt to anyone who says different. Pelvic tumors are following orders, shrinking and softening and being little Trial’s Pets, but noooooooo, not my lungs.

Thus I’ve spent the past six days waiting for an appointment with my other oncologist, who the Phase I doc said would probably want to take me off the trial and start chemo again (but I should keep taking the nine delicious pills a day just in case she didn’t want me to stop, because once I stop I can’t start again, etc. etc.). Today I met with her, and once we’d worked out that no, Phase I doc didn’t want me to continue the trial even once I’d met with her; he said SHE’d probably want me to stop it and go on chemo (you’d think the inter-office communications over there at that world-class Cancer Factory would be a little clearer), there’s a new plan in place.

Starting next Tuesday, I’ll be hopping back on the chemo train: carboplatin and Alimta. Supposedly not too debilitating, and I’ll get to keep my hair. (Good news/bad news: while I like having hair, mine is really pissing me off, and I miss my perfect, ten-second-toilette wig.) And the schedule will allow for me to still make my First Descents climbing trip on the 19th.

I was pretty discouraged, feeling like, “how many more damn things do I have to throw at this disease?”, but now I realize I have lots of options still open to me. Once chemo has stabilized my lung disease, we can start looking once again at the over 300 clinical trials that are available to platinum-resistant ovarian patients. So many choices… think I can find one in Miami for the winter?

Photo here.

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