A Hundred Gs, Part I

January 20, 2011 at 4:44 PM (Family, friends, Hair, Happy, Research, Treatment) (, , , , , , , , , , )

Alright, stop harassing me, I’m back.

A couple of items before I jump in:

  1. I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
  2. I hate winter.

The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.

I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.

Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.

Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?

That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)

And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.

Without this two months of feeling better, I might have missed this:

The A-man and his post-bar-fight face.

Tomorrow: Part II.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Advertisements

Permalink 31 Comments

Someone Called the Hotline

December 21, 2010 at 6:02 PM (Faith, Family, friends, Treatment, WTF) (, , , , , , , , )

Well, well, well. SOMEONE has been doing their homework, faithful supporters. When I sent out my plea for more focused energy and good wishes, prayers, karma, etc. etc., I must admit I wasn’t expecting such immediate and obvious results!

I arrived at the Brigham today fully expecting to leave with a hole in my back and a bag of pee hanging off my hip, and I wouldn’t be lying to admit that the thing I was most disappointed about is my then-inability to wear skinny jeans tucked into my fabulous new cancer-kicking boots. But I bucked up, since losing a kidney altogether wasn’t really in my game plan either, and plopped in the waiting room to finish a two-week-old People until my buzzer went off.

I was escorted down to the prep area, and asked to wait before changing (into another dynamite johnny/slipper socks ensemble) for someone from Radiology to come talk to me. This wasn’t a surprise; I was expecting just a conversation about conscious sedation or something, so I laid back and closed my eyes for a few.

The cute Radiology doctor came and shook my hand, and told me she’d been on the phone that morning with my urologist, Dr. Kenneth Branagh. It seems that sometime between my 11/19 CT scan, which showed the hydronephrosis (swollen left kidney) that required stenting, and last Wednesday (12/15)’s CT scan, the situation resolved itself. No, for real. The blockage is still in the ureter, which meant that the stent couldn’t go up, but it must not be a complete blockage. There is no swelling of the kidney at all, and my kidney function is totally normal, creatinine at 1.1.

I was so gobsmacked I thought I was being Punk’d. (And, frankly, a visit from Ashton Kutcher really would have been the icing on the cake.) I said, “So, basically, Merry Christmas to me?” And she said, “That’s what your urologist said!” Then after a nurse de-accessed my port, I wandered upstairs to tell my friend/ride that we were free to go, and came home for a Class A, stress-free nap. Bag-free, too. Everyone here at Casa Carcinista is doing a little happy dance tonight.

So what I need to know is, to whom do I send the thank-you note?

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 40 Comments

Fine, Thank You

November 15, 2010 at 11:37 AM (Awareness, Family, friends) (, , , , , )

As I climb back out of the chemo pit I fell into last Tuesday, I am greeted by Christopher Hitchens’ latest brilliant column in Vanity Fair, on Cancer Etiquette. Now, as anyone who has personally encountered The Big C will understand, there is a whole new book of rules that apply to those of us on the ugly side of the fence. And, as Hitch so brilliantly reminds us, the proper response to “How are you?” is NOT a lengthy discussion of your latest symptoms, scan results, and tumor diameters.

Conversely, the asker, when returned with a simple, “Fine, thanks, and you?” should NOT, as happens so frequently, re-state, “Yes, but how ARE you?”  There may be things the patient doesn’t want to talk about. Maybe she’s had a long day of explaining to everyone how she’s really doing, and is sick of it. Maybe the news is bad and she doesn’t want to get into it right now. The sharing of bad news is particularly difficult, as the toughest part for me of having Stage IV cancer (and, as Hitch notes, the thing about Stage IV is that there is no Stage V) is having to explain to people what’s really going on inside my body, how dire it is, and watching and dealing with their reactions. Because, frankly, I’m not very comfortable with my own reactions to the situation, and I’m not exactly equipped with the emotional fortitude to comfort you when you hear my news. Hence the “No-Cry” zone I’ve erected around me since 2006; if you lose it, I’m going down, too.

On the flip side, there are those who feel it will be encouraging to share with the patient the story of another person they’ve known, personally or, my favorite, “my sister’s best-friend’s boyfriend’s cousin’s mom” who had the same, or perhaps completely different, cancer as I have, and who took every treatment plus radiation and is now hiking Amazonia/lived thirty years past doctors’ expectations/died a horrible, lengthy and agonizing death in sub-standard hospice care. Whether uplifting or depressing, these stories leave the patient wondering: 1) Is she telling me this story to make me feel better? 2) Is she telling me I’m going to die the same way? And, as Hitch found out, 3) What the hell do I say next? Frankly, we can all do without (see para. 2) having to come up with conversational tidbits to make you feel better about your story/aunt/distant acquaintance and the outcome of their cancer.

You see now why my standard response to the question in question has become, “Upright and conscious.” For those not in the know, my answer is funny, just another frazzled, sleep-deprived mom-on-the-go; for those who are well-versed with my sitch, it’s an honest assessment of my day, at least that part of it that I’m in right now. “Fine, thank you” just leaves too many open ends.

Instead of trying to relate to your friendly neighborhood cancer patient, to make her see how closely you understand what she’s going through (because, unless you’ve been the one holding her hair back for her in front of the throne and massaging her neuropathic feet, you can’t), just ask her if she’d like some company. Bring her a coffee, or take her out for one. Talk about the weather, your kids’ soccer games last week, how annoyed you are by Christmas commercials on November 1. If she wants to talk about cancer, she’ll be more likely to when she knows you’re there for the long haul than just the quick update.

Gee, chemo seems to make me a little bitchy. Aren’t you glad I’m back?

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 17 Comments

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.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Photo courtesy here.

Permalink 11 Comments

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.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 16 Comments

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

Permalink 4 Comments

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

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 10 Comments

Coping Skills

September 17, 2010 at 12:23 PM (Family, friends, Happy, kids, Real Life, Treatment) (, , , , , , , , , , )

I left a whole bunch of things at home this morning as I rushed out of the house ten minutes behind schedule, and only realized my mistake(s) as I was merging onto the Mass Pike. I called home to ask Mr. Wonderful to email me the shopping list so I could stop on my way home. Being the Mr. W that he is, and since he was coming downtown anyway for a meeting, he offered to bring the other stuff to me at The Cancer Factory. Timing was tricky, as I was running back and forth between two buildings for appointments that couldn’t seem to start on time, but someone smiled on me, and he pulled in just as I was dashing back across the street for my CT scan.

Short story long, he brought me the things I had forgotten, packed in a little reusable bag from lululemon (a store at which I hope to spend a lot on exercise clothing in the future). Printed all over one side of the bag are inspirational quotes, admonishments to carpe diem, etc. One specific line caught my eye: “Life is full of setbacks. Success is determined by how you handle setbacks.”

Particularly poignant this week. Yesterday I cornered a despondent and stomping #1 Son, grouchy because his brother hadn’t wanted to play outside with the dog with him. From somewhere deep within the storage pool of mothering instinct came the line, “You can’t let your happiness depend on the actions of other people. They all have their own thoughts, their own desires, and they can do as they please. If you can’t be happy unless they do exactly as you wish, you’ll always be disappointed. Be happy with your own actions, and let that be enough.” (I have no idea where I got that from, as I can be quite susceptible to the problem at hand myself, but it sure sounded good. I should probably needlepoint it on a pillow.)

It’s been a tough week to be me. Although both kids have been in school five days, for six hours at a stretch, by Tuesday night I had come down with the week-off-the-mystery-drug-fever again, and felt like a sodden lump of sand.  A “quick” four-hour trip down here on Wednesday for two types of blood draws and pee-in-a-cup showed no reason why I should have a fever. Nonetheless, by mid-afternoon I’ve been ready for bed, which did not accommodate yesterday’s pot of chicken-noodle soup (I had to do something with Monday’s leftovers) nor the 6-to-7:30 soccer-clinic-on-the-complete-opposite-side-of-town-in-a-downpour-wait-in-the-van nightmare. By 8PM I was fish food.

And as I slumped despondent on the couch with hot tea and layers of wool, watching The Blind Side with the hubs, I was put in mind of something my own mom used to mention (from her infinite pool of mothering instinct). When asked the eternal question, “What do you hope for your children in their lives?”, she never responded the expected, “I just hope that whatever they do, they’re happy;” she always said, “Life is full of times that won’t be happy. I want my kids to be able to cope.”

Which is, I think, what’s been going on here at Carcinista Central. Whatever the cancerverse throws at us, we find a way through it, and most of the time we are actually happy (although some days I just sob on the steering wheel). We lean on each other when we need support, take time away when we need to be alone, and take risks knowing that the family and friends who love us will be there to pick us up if we crash.

I’ve just met with Dr. A, and my CA-125 and CT scan have deteriorated a fair amount from ten days ago. While that’s never good news, at least the results are definitive: I’m going off the study and starting chemo when I get back from First Descents. I am glad that my week in Colorado will be drug-free, but I know I’ll still be a tired mess, push-ups and pull-ups notwithstanding. It’s a program for cancer survivors, after all, even if I am the oldest and illest one there – I’m sure they’ll understand. I’ll nap if I need to, bow out of activities if I must, but I’m going. If they have to shovel me onto the plane in a wheelbarrow, I’m going. Mom taught me that much.

Besides, six hours all by myself in first class? Each way? I wouldn’t pass that up for anything.

Photo courtesy First Descents.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 12 Comments

Lighten Up

August 12, 2010 at 11:25 AM (Family, friends, mommy guilt, Zen) (, , , , , , , , , )

Last week we had a mini-vacation and went to stay with friends on Martha’s Vineyard. We slept in, ate too much, had beers with lunch, napped on the beach (my favorite four-word phrase in the English language), went out one night without the kids and finished conversations. Ate s’mores. You get the idea.

I had succeeded in mentally reminding myself for three mornings not to forget to carry with us or administer my delightful meds (which must, you remember, be kept under refrigeration below 46˚). Since there were coolers all around, going to the beach, etc., I was able to dump them in and choke them down in the vacation-short space between breakfast and lunch.

Reluctantly, on Saturday we packed up our bags, double-checking under beds, nearly forgetting swimsuits and towels drying on the deck rail. I loaded my bottle of iced tea and the boys’ water bottles into the freezer to cool down before packing the cooler for the trip home.

The horde of us descended on a fish shack in Vineyard Haven to grab some lunch before catching our 2:30 ferry. As we waited with the hordes of other hungry people for our lunches, though, we realized we wouldn’t have enough time to eat and still make the boat. We grabbed our bag of sandwiches, said goodbye to the wife and kids of the family we stayed with, and the dad drove us the rest of the way to the ferry dock. Hugs all around, double-check the back of the car for our stuff, and bundle ourselves into the growing line of passengers waiting to climb aboard.

Son #2 dropped his Gatorade bottle for the seven-hundred-and-forty-third time, and I told him, “One of these times, that bottle’s going to split open, and then you won’t have anything…to…drink…but…water…until…” ::Crickets::

“Mr. W, did you grab the cooler?”

“No.”

Crap. “Left my damn drugs at the house!”

I turned and started running (wearing a 35-lb backpack, no less) out to the street where I could see our friend had just been waved into heavy Saturday August Vineyard traffic by the cop trying to keep order. Thank heaven his window was open.

“MARK! MARK!” He turned to look at me.

“I LEFT MY DRUGS AT YOUR HOUSE!!!” (In hindsight, not the best sentence to shout across a crowded intersection in front of a policeman.)

Revision: “I left my meds in your fridge!”

He pulled back into the parking lot, and my three gentlemen shuffled over and got back in the Jeep. I started in browbeating myself about my forgetfulness. “Jeez, I can’t believe I forgot it. I’m so sorry to make you have to come back. I can’t believe I didn’t remember that stuff! How many times did I remind myself that I had to get the cooler? What an eejit.”

This went on for about five minutes. Then I stopped for a second, and realized that I was the only one beating me up about it. Not even any teasing (unusual). And in a flash of maturity, I quit. No one seemed to be upset about having to miss the 2:30 but me. And on second thought, what the hell did I care? Why was I getting all jacked up?

We rode back to the restaurant to finish lunch (the best lobster roll I’ve had in years) with our friends. There was another ferry at 3:45, which meant we’d get home to pick up our dog a little later. No harm, no foul – it’s not like we had an appointment or something waiting back on the mainland.

This verbal self-flagellation is a lifetime habit for me, and I suspect for many others. Does it come from my desire to cut on myself before anyone else gets a chance to? Or am I so concerned about inconveniencing others (and possibly having them speak disparagingly about me after I leave) that I am trying to make sure they know I’m not really that inconsiderate?  Whatever the reason, it’s stupid, and a waste of energy.

It’s time to adopt the Dr. Seuss quote I heard recently and have come to adore: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I’m a good person, my friends know it, and my life is way too short to spend time browbeating myself for mistakes. Everyone makes ’em, and we’re all doing the best we can. Move on.

Photo credit here.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 5 Comments

Family Friend Supports Cancer Research; Please Help!

July 24, 2010 at 7:40 PM (Family, friends, Help, Research, Treatment) (, , , , , , , )

Dorcas Ann Casey, on the right, with her mom.

Hi All:

I have a favor to ask. A good friend of mine, Dan Pike, is competing in the Ironman Lake Placid this weekend (2.4-mile swim, 112-mile bike, 26.2-mile run!) in memory of his cousin Dorcas Ann Casey, who lost her battle with synovial sarcoma, a rare soft tissue cancer, in 2008. Dan is raising $25,000 to support the Dorcas Ann Casey Fund that will benefit synovial cancer research at Memorial Sloan-Kettering Cancer Center.

Dorcas was the source of much comfort to me during the early stages of my cancer fight; she sent care packages with comfy slippers and yummy candles; she sent books of inspiration and letters of support. She and I had a rollicking time the last time I saw her (with my GI-Jane-short hair) laughing at the random ridiculousness of the whole cancer trip. I was so sorry to hear she’d lost her fight.

If you’d like to join me in supporting my dear friend Dan in his heroic task this weekend, please visit the link below which whill take you to his page on Fred’s Team, Memorial Sloan-Kettering’s site for fundraising.

To donate online:
http://mskcc.convio.net/site/TR?px=1771450&fr_id=1370&pg=personal

To contribute by check, please make checks payable to MSKCC, noting “Pike Ironman/Fred’s Team” in the memo line, and mail to:
MSKCC
Attn: Elise Cook, Annual Giving Officer
633 Third Avenue, 28th Floor
New York, NY 10017

Thank you all for your help – let’s keep fighting to get to a place where cancer is just a distant memory. Please feel free to forward this to anyone you know who will help!

Photo courtesy Dan Pike.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine

Permalink 2 Comments

« Previous page · Next page »