A Hundred Gs, Part III
(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!
A Hundred Gs, Part II
We ate so many of these it's scary. And delicious.
On Thursday night before Christmas, while Mr. Wonderful and I were just settling down to another exciting read of The Deathly Hallows with the cherubs, the doorbell rang. Seven o’clock? On a weeknight? (Good grief, I hope it’s not carolers – usually four or five glöggs into their celebration, they force you to stand, freezing, in the doorway and smile inanely while they try to remember the words to “Good King Wenceslas”. Erm, sorry — back to the story.)
Mr. W went to open the door, and up the stairs trooped old friends, neighbors, new friends, their families and kids, totaling about ten merrymakers. After hugs and introductions all around, the Organizer, I’ll call her, and her daughter passed me a big folder full of notes and drawings, plus a beautiful, handmade card with a big wad of cash. “What’s this?” I asked.
“We know you already bought your boots, but a bunch of your readers and supporters got together and took up a collection for you, so you have some mad money to have fun with. Buy clothes, books from your reading list, take your boys out for dinner, whatever you want. Just enjoy it,” Ms. O said.
It was a big pile of money, and I was really floored. See, I’m not used to being the center of attention, and I felt very humbled by everyone’s generosity. More hugs all around, and wishes for Happy Holidays, and they were off. I felt very warm and fuzzy as we went to find out what the Dark Lord was up to that night.
It wasn’t until the next morning, during a lull in the packing for our weekend trip to Norman-Rockwell-gorgeous Vermont, that I had time to sit down and really examine the folder full of notes. Not only was there the beautiful card and generous gift from those who gave cash, but there were at least ten more notes, checks, and gift cards from other blog-readers and assorted supporters from all over my life: neighbors, friends-of-friends, college friends I haven’t seen in twenty years, Mr. W’s co-worker friends. I was rendered completely speechless. (And you can imagine how difficult that is.)
My initial reaction was, “I don’t deserve this. I’m going to donate it to Ovations.” Mr. W talked me out of it: he said, “These are people who gave to YOU to help you feel better while you’re feeling horrible. They want you to spend it for yourself, to make you happy. Use it, enjoy it. You deserve it.” I felt guilty, I felt greedy, but I could feel the love in all the notes, heartfelt kids’ drawings, and expressions of uplifting support, so I stopped.
And switched it to gratitude. I know that people who love us, people who read my blog, wish there were something they could do to help me get through this disease. So when the opportunity arises to bring casseroles, Christmas cookies, or donations to the Carcinista Couture Collection, they jump. They help. They get gifts from giving, too. That’s what the whole Christmas-present thing is all about.
Gratitude. I’m full.
With heartfelt thanks to Ms. O and her co-conspirators, The Instigator (BKJ), TLP, TEA, SHB, SM, SMH, KFS, JQP, JBB, H&GP, JPW, JWF, HM, K&RS, DS, and anyone else, in my chemo-brained stupor, I might have missed. You have no idea.
Photo credit here.
A Hundred Gs, Part I
Alright, stop harassing me, I’m back.
A couple of items before I jump in:
- 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.
- 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.
Someone Called the Hotline
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?
Fine, Thank You
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?
Let’s Be Honest
I’ve been avoiding writing this post for three or four weeks now because I know no one wants to read it. (No, I’m not dying. My CA-125 seems to be responding to the new chemo, although I have yet to feel any practical benefits.)
But things at the ol’ Casa Carcinista are, well, different since I got back from Colorado.
Sure, there’s the coughing and wheezing, the resting after a flight of stairs. The utter lack of an exercise routine. But I’m talking about more meta-changes.
For the past four-and-a-half years, we’ve been sailing along through open seas, scanning the horizon with our telescopes, peering from the crow’s nest at the edge of the world, looking for signs of what’s to come. For that time, there’s been no sign of anything, just flat horizon. Some days we’ve had calm seas, and picnics on the deck; other days have been stormy and I’ve stayed below decks. We’ve just kept sailing, waiting and watching.
Now, there’s land on the horizon. Distant, hazy, indistinct, but it’s there. And that’s where we’re sailing. Don’t know how long it’s going to take us to get there, nor whether we’ll change course and sail somewhere else first, but there’s no doubt of my destination.
I think what triggered this all was the realization, in Estes Park, that I was not well. For the first time, really, since forever, I was sick and not getting better. There were things that I just couldn’t do because of cancer, and the likelihood that I ever would be able to do them was small and shrinking. Even during my IP chemo routine in 2006 (the energy nadir of my life), I was able to drag myself to my best friend’s wedding as MOH and even threw down a little swing with my sweetie. Sure, I paid for it for days, but it was a hoot, and I got better. I’m still waiting to feel as well as I did before FD. (Nothing personal, FD – I still love you.)
Strangely, I’ve found these recent changes in my life almost comforting. Where the null-sum of cancer is undoubtedly the waiting, the uncertainty that comes while a surgery date approaches, or while you’re twiddling your thumbs until the scan results come back, any kind of certainty in this free-for-all can be the equivalent of a neatly solved equation, exhaling a long-held breath. As our therapist reminded us this morning, we’ve entered the last healthy step of the stages of grief: acceptance. Not that my demise is imminent, but that it’s out there, on the horizon, whether we’re sailing there directly or around the Horn first. Can you imagine setting out on a journey that will last the rest of your life and not knowing where you’re going or when you’ll get there? (And forget about knowing what to pack.) You see my point.
Even more strangely, a field of calm seems to have settled over Casa Carcinista. With this acceptance has come relinquishing of closely-held argument positions, reductions in conflicts, a willingness to compromise and see the other guy’s point of view. The little brown house is full to bursting with love. Mr. W and I are more likely than we used to be to drop what we’re doing and have a hug, or sit at the table after the boys are excused and just talk quietly about our day. We listen more closely when our kids stop us to talk. We are always available for snuggles. We are focusing on the stuff that really matters – building and maintaining healthy relationships, following family traditions, spending time together – and, for the most part, filtering out the dross.
So no, since you asked, I’m not scared. There are still plenty of things I’m pissed off about, and for damned sure I’m not anywhere near finished fighting this battle. But the cloud of acceptance and love that has descended over Casa Carcinista has made us better people, and I wouldn’t trade that for a house at the beach.
And while we are speaking of beaches... here's my favorite.
Photo courtesy Mr. Wonderful.
;
Hermit Crab
I seem to have dropped off the face of the earth, rants about pinknausea notwithstanding. I’ve been trying to figure out why I don’t feel like talking right now, and it seems to come down to chemo. (Doesn’t it always?)
Starting actual chemo again (vs. a clinical trial or biologic or something) threw me for a loop. Apparently I’ve blacked out how crummy I feel after infusions, because when I collapsed into bed at 5:30 on day 3 of the last cycle, I was surprised. Mr. Wonderful said, “Don’t you remember? This is usually the time you start feeling like crap,” but I had forgotten it. Like how you swear immediately after giving birth that you will never, ever, ever do that again, then twelve months later you’re all, “Let’s have another one!”
So I spent day 4 and 5 in bed, me and the cat and the Compazine, and by the end of the weekend I started to feel like myself again. But apparently aging your body forty years in four years has some drawbacks, and I no longer rebound like I did in 2006. I’ve been having trouble just getting out from under the coughing courtesy of Estes Park’s elevation, and still haven’t resumed my exercise schedule. My lungs don’t like it, not one little bit – not even climbing the stairs, and last night Mr. W and I had a giggle at me huffing and puffing after pulling off a tight long-sleeved t-shirt.
Now I’m at The Cancer Factory for Cycle 2, and anticipating another week of feeling lousy. But why that has to send me into hiding for the next two weeks as well, I can’t figure out. I’ve turned into a terrible phone friend, forgetting to return messages and schedule dates. Some days I just drift along until it’s time to get into bed again, and that’s about all I can handle. But other days I’m doing my little suburban-mommy thing, driving and shopping and cooking and all, yet I still can’t manage to get my head out of my domestic bubble.
So I guess this column is a sort of apology, to those I owe phone calls to, or to those with whom I made tentative plans and then never followed up. It’s not you, it’s me. It’s taken me two years of therapy to be able to accept these words and feel comfortable saying them: I’m doing the best I can.
Photo courtesy here.
Storming The Castle
Despite my facade of bravado the night before, I woke on Thursday nervous as hell. Picture it: a woman who, regardless of recent fitness, has a lifetime history of athletic underachievement, a recent history of daily two-hour midday naps, and a bad case of altitude sickness (not to mention stage IV lung mets) spending six hours climbing a big rock and then rappelling down it again. Teamwork and awesome support notwithstanding, the potential for failure was pretty high. But then again, that’s what First Descents is all about, right? Pushing past your fears, self-imposed mental and physical limits, and getting on top of the rock.
Everyone was pretty jacked up by the time we left the lodge. The plan was to revisit the big thumb we had climbed on Tuesday, just outside of Estes Park, but when we stopped by Mary’s Lake to throw in rocks covered with our inhibitions and self-criticisms, the horizontal rain and strong winds threw a wrench in that plan. Flexibility and going-with-the-flow might be the secondary mottoes of FD staffers and CMS guides: within minutes, a new plan was formed, and we took off for the Boulder area and Castle Rock. The hour-plus drive was beautiful, and gave me a chance not only to admire more of the amazing mountain scenery but to psych myself up for the challenge that was looming over my head like a cliff. I had gotten over the whole being-carried-up-the-approach thing; now I had to trust myself, which seemed significantly harder.
Down a winding valley road just outside of Nederland, Castle Rock appeared around a corner and everyone gaped. Three hundred feet of lumpy granite rising into the air like a tower; a creek runs around one side and the road around another. It looked as if it had been set down inside a bowl, with the hills curving around it – maybe that would cut down on the wind? Whatever, it was tall, and we had to climb up it.
The campers split into two groups: the more expert climbers (Alabama, Psych, Foodie, Sprouts, DoBo, Fluff) and the less expert climbers (Spike, Clover, Milf, Caribou, Wiki, Kale, and me). Guides were everywhere, looking very businesslike, draped with hundreds of feet of rope and dozens of carabiners, talking intensely in hushed groups and planning like generals. We scattered into the bushes for last-minute bathroom breaks, and I noticed dusty chalk prints in the cracks up the steepest southern face of the Rock. Clearly, it was a top-notch climbing spot; I just hoped we’d have slightly larger handholds.
And in came the Sherpa. Nicknamed Luddite, I had gone all jittery-schoolgirl when he’d introduced himself at breakfast: 6′ 3″, strawberry blonde, broad shoulders. Now, with a coil of rope split over each of his shoulders, he was positively psyched about practicing carrying me up the approach – whether his insistence that I was doing him a favor was just blowing sunshine or actual fact I’ll never know, but who the hell cares. Check out the photos:
It was rough, I tell you, rough. His shoulders were so broad it was hard to get my arms around them. Grinning like an idiot the whole ride. You see I needed the team tiara to really polish off the effect.
Away we went, leading the north-side group like the Pied Piper. Low branches were a bit of a hazard, but fortunately the approach only took about five minutes, as opposed to the twenty-five minutes of the other rock we had planned to climb. I didn’t have long to feel guilty.
By the time we got started actually climbing, it was nearly noon. Good news: lunchtime! Warm sunshine! Bad news: naptime was approaching like a dive-bomber. Sometimes I got frustrated at the hurry-up-and-wait nature of it, each of us climbing in pairs up the pitches, but the rest time while we waited for the team to reassemble gave us time to rest and eat and drink. The guides were amazing – the spaghetti pile of two-hundred-foot ropes, carabiners, and climbers they had to belay and keep track of was staggering. There wasn’t much conversation with them, although they did pause for an occasional smile and a contribution to the ongoing “If…” book discussion. Special shout-out to Spare Parts, who worked the belay like a machine all day long.
- That’s Li’l Bits – and 40 lbs. of gear.
Each pitch in itself wasn’t that hard for me. The irony of the whole day is that I actually found myself liking climbing. It’s like putting together a puzzle: a hold for the left hand here, a step for the right foot there, and hoist! Now a right handhold, a left foothold…no? Can I brace with my thigh? Very rewarding and satisfying to the female tetris-loving brain, like watching a needlepoint project or a jigsaw puzzle turn into a whole image from the teensy mosaic pieces. There were moments where I got frustrated because there wasn’t an easy solution, but the cheering from the teammates and occasional coaching from the guides helped my confidence enough that the pieces fell into place, and I found myself flopping over the top ledge like an exhausted swimmer out of the pool.
Second-to-the-top pitch. Sherpas don't get cold ankles, apparently.
After about stage three, though, I was done. No, really. My legs were like Jell-O, my arms too tired to lift over my head. I had eaten good complex carbs and drunk plenty of Gatorade, but the burst of renewed energy was not coming. I think my body doesn’t do that anymore. But no sherpa was going to haul me up the rock. And there was no bathroom at the summit. So this is where I usually fall flat – I’m really tired, it’s time for a nap, I can’t do any more today, I’ll be in my office. Take me home, put me to bed, see you later. This day, from somewhere, I had to find the energy to keep climbing.
I just didn’t think about it, any of it. Not about how tired I was, not about how crappy my lungs felt, not about how tired I was of being cold and clinging to a rock. Not about how far my life had come from what I’d imagined it would be, nor how pissed I was at that. I just climbed. Waited ’til it was my turn, and climbed. And then I was up.
Once we were all there, it was strange – we were all jubilant, incredulous at the magnitude of our accomplishment, but exhausted. No one seemed to want to leave, whether we were all too tired to move or just didn’t want it to end. Photos were taken, jokes were told, and then it was time to go.
Rappelling was less terrifying to me than belaying; I guess I’m a control freak, because once I was the one holding the reins (so to speak) letting me down the cliff everything was fine. It doesn’t make stepping backwards off a perfectly good 250-foot cliff any easier, though, even when I’m well rested. Which I was not. And yet, I think the exhaustion quieted the jitters: by the time my jelly-legs had gotten me to the brink, and Spare Parts had hooked my harness to the ropes, I was simply so eager to be finished that I cooked over the edge and started bouncing my way to the ground.
After what felt like ten minutes, but was probably only about two, I stopped for a rest. And looked around me. The sun was setting, the shadow climbing the wall of the bowl around me. The sky was blue. No one was asking me for anything. I had gotten up and over that big friggin’ rock under (mostly) my own power, despite my misgivings. Holy crap. Then I made a mistake – I looked down. People are very tiny from that far up, as are minivans with reclining front seats. Time to get cracking.
Shoulders get sore passing handfuls of rope to yourself over and over again. Switching hands wasn’t an option, though, so I rested a couple of times. I was really cognizant of being the third one down, though, and that there were about twenty people up top who needed to follow me down. Past the hundred-foot pine tree, over the ledge, run out of footholds and swing precariously, and then hands on my waist helping me down. Done. I could barely unhook my climbing harness and stagger to the van. Seat down, feet up, pass out.
And not be able to fall asleep. As I lay there staring at the bushes outside the window, so many things ran through my head. First was, “Why the hell did I do this? I can’t believe I signed up for this nightmare. I’m so tired I’m going to die.” Next came the cascade of memories from the day: rooting for reluctant climbers; Slash’s ridiculous sing-alongs; the sunshine on all of us at the top. As I heard subsequent rappellers finishing their descents and cheering for each other in a mob, I was overcome with jealousy: at their energy levels; at their ability to stand up after that day; at the fact that some of them were over their disease; at the fact that I wanted to plan to do First Descents again and might not get the chance to. Tears of exhaustion. Frustration. Nap.
Spare Parts opened the tailgate some time later to start loading in equipment, and threw on some tunes for the assembled cheering squad – the clock said 6:45. No wonder I was zonked. It took another forty-five minutes before everyone was down and loaded. I was so excited to be driving home I could hardly stand it. Nap. Forget dinner – to bed, to bed. My pre-noon flight the next morning would probably require an early wake-up call, so I was eager as hell to check out.
Ha ha. It seems that other members of our team were HUNGRY. We stopped in Nederland at a Nepalese restaurant called Kathmandu for dinner. I was nearly in tears again at the thought of having to get up and walk into the restaurant and make conversation for an hour. Oh, and it’s buffet. Now I have to balance a plate, stand up and make conversation. Then it came to me, like a message from heaven: I. can. order. a. diet. Coke.
Caffeine, food, and chai actually dragged me out of my funk, and I completed a couple of sentences at the table. But by 8:30 I was practically herding people out the door to the vans. Slash said that once we got back to the lodge, we still had a Campfire meeting to get through, plus the awesome slideshow from the week. Bedtime? Maybe midnight.
I did finally fall asleep in the van, but it took everything I had left to pry my bod out of bed, wrap myself in a sleeping bag and shuffle outside for the Campfire. I won’t share everyone’s secrets, but it was clear ground had been broken, lifetime friendships made, personal limitations smashed.
For me, my contribution to Campfire was that the day’s heroic achievements had been so huge there was no way I could summarize them without some sleep. I said that when I woke up on Tuesday, I’d probably blow my own mind at how huge the day had been. I was seriously so drained, and the magnitude of our journey so epic, that to this day I’m still trying to wrap my head around it.
What I know for sure is that the next morning, when I had to say goodbye, it was like cutting off my arm. First Descents felt like an entire year of college, with its friendships, shared in-jokes, and constant togetherness, crammed into five days. I was so tired I thought I wouldn’t make it through security (thank heaven for first class lines!), staggered to a kiosk for a fatty bagel-egg-bacon-cheese, collapsed at the gate and burst into tears. How does one come down from a high like FD and return to the real world? The regular real world would have been hard enough, but I had to psych myself up for chemo in two days. I needed some motivation.
Memories.
Day 1: What have we signed up for?
Day 2: Post-climb chillin.
Sprouts, Spike, and Shotgun revel in the view from the top.
Day 3 mountain hike, and sweet Clover.
First Descents #53 Colorado Climbing camp, victorious.
I’ll be back.
Photos courtesy Kale, Clover, Spike, DoBo, Wiki, Wildflower, and Garçon. I forgot to take any.
Coping Skills
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.
Lighten Up
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.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 
