Cancercoaster

July 28, 2010 at 11:51 AM (Faith, Family, Mood, Recovery) (, , , , , , , , , )

Last night my husband and I were watching that new Tony Robbins series on NBC. The episode featured Tony helping a couple break out of their ruts: at their wedding reception in Mexico, the exuberant groom had dived into the shallow pool to swim over to where his wife and her friends were dancing, and broken his neck. Quadriplegic since that day, they had ceased to be newlywed husband-and-wife, and become nurse-and-patient. During the course of the show, Tony had the excited husband and terrified wife skydiving over Fiji to show them that there’s no limit to what a paraplegic can accomplish but his imagination. (It was a pretty great show, and I’m a cynic. But I dig transformations. Jillian’s my homegal.)

At one point Mr. Wonderful and I were talking about the wife and the role she’d settled into, and how she was paralyzed herself by her fear of losing her husband altogether, her sense of injustice at having to suffer through a life so different than the one she’d imagined. In mid-sentence, Mr. W started to well up, and as I grabbed his hand, he broke down. He said he was remembering the night of my first surgery, and how he’d been feeling all the same things: angry with the doctors; helpless at my illness; terrified of our new future and what it would bring; sad for me and what I would have to go through.

After a long hug, we moved on, but I realized that in addition to cementing our dedication to each other, the moment represented just another stop on the wild ride we’ve been on since 2006. Cancer diagnosis? Down. Find the right oncologist and a plan of attack? Up. IP chemotherapy? Way down. Finish treatment? Up. Nine months of remission and a big thank-you party? WAY up. Recurrence? Doooooown. You get the picture. Cancer patients and those who love them learn an incredible amount in the simple task of waiting: waiting for test results; waiting for scan results; waiting for the surgery date.

I’d love to say that a zen-like patient peacefulness is the result of all of this unpredictable change. But our reactions to the ups and downs have yawed wildly as well. Sometimes I’m able to accept a recurrence notice with resigned determination, while my mother bursts into (prohibited!) tears. Sometimes I come home from a simple office visit and a blood draw and snap at everyone in the house and Mr. Wonderful calms me down and gives me needed space. Other times he rages against his lack of control and we argue about something stupid like taking the last cold Diet Coke out of the fridge (a hanging offense).

I’ve had a busy month in the up-and-down department. From the down of intractable lung mets and decreased physical activity, I sprang back up with the great PET scan results, confirmed by CT last week. But not all the way up, because my left leg swelling kept increasing, and everyone (including me, in tears on Monday) feared it was another blood clot, which would mean blood thinners, which would make me ineligible for the trial that was saving my life (way down). Yesterday I had an ultrasound that showed no trace of a clot, meaning I am cleared to receive lymphedema massage and continue the trial (up Up UP!)

Which brings me back to my post on Friday about good support. By talking openly and honestly, and patiently listening without judgement, Mr. W and I have been able to weather the vagaries of this unpredictable odyssey. It’s definitely been a long learning process, with exemplary moments and embarrassing blow-ups. Often, the patient-listening-without-judgement has had to come in the form of an outside party, namely our therapist, who I maintain is a priceless aid in my recovery. But the result has been the smoothing out of the rough places that used to trip us and send us (and by “us” I mean our whole support team) spiraling off in different directions – now we hold each other up and ride on together.

Certainly the clichéd “fullness of time” has lessened the height of the peaks and the depth of the valleys. I prefer to think of it as a mosaic, or a Seurat painting: up close, each tile or spot of paint seems powerful, distinct; but with distance, the whole image becomes easier to see, the emotional shapes easier to recognize, the cohesion and strength of our family more visible.

I’ve never liked roller coasters. Too fast, too scary, too much stomach-in-the-throat. Since I have to be on this one, I’m glad I have reliable hands to hold onto. Who are yours?

Photo link.

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Back Seat Driver

July 12, 2010 at 11:28 AM (Faith, Hair, Treatment) (, , , , , , , , )

A friend and I were talking this weekend about her upcoming vacation. She and her family are flying to Wyoming and renting an RV for a week of sightseeing – mom, dad, six- and eight-year-old sons. She was joking about her outrageous organizing tendencies, and her pre-vacation lists of what to pack, what to do, what to buy. We both decided, though, that the way to go about a traveling trip like this was not to adhere stringently to an agenda (“Come on, kids, eat quickly! We’ve gotta get going if we’re going to make the World’s Largest Ball of Tinfoil before 3 PM!) but to follow the planned route easily, staying relaxed and making allowances for spontaneity and unforeseen events (like ice cream stands). There are far fewer temper tantrums, from children or parents, if everyone’s going with the flow.

I thought about how this is the best way to parent, too. We all have preconceived notions about what parenting will be like (toddlers cheerfully playing house; our elementary school kids racing off the bus to give us a hug and tell us about their day; family dinners with animated conversations, in-jokes, and clean plates), and one of the hardest parts of growing up into our roles is realizing how far reality diverts from those notions (toddlers throwing poop; elementary school kids sulking into the house without a word; family dinners where everyone refuses to eat, speaks only potty talk, and is sent from the table in tears straight to bed).

Cancer has been like that. As I digested my diagnosis, back in May of 2006, I put together my idea of what treatment would be like: lose hair, spend summer in bed, fight like hell, receive clean CT scan, move on with my life. But as I struggled through treatments, trying to maintain some semblance of my former self, feeling horrible, I realized cancer had other ideas.

Boy, does it ever. My vision of a complete remission was marred by not one recurrence but two, the second of which refuses to let go of my innards. My vision of flowing locks has been replaced by persistent brown Nancy-Reagan-head and the cruel fact that no one checks me out any more, because I look like their mom. My early forceful, driving thought that I’d kick ovarian cancer to the curb and live a long, grateful, loving life has taken a back seat to the slow but steady drip of the odds stacked against me.

I’m not throwing in the towel. Not by a long shot. I’m still in it to win it, whatever road I have to drive down to get there. If this trial doesn’t work (I’ll know more by this afternoon) I’ll start another one. I might bitch about side effects, but I’m damn glad to still be here to experience them. I’m learning that the more I roll with the punches, accommodate changes in schedule, drugs, doctors, scan results, pull back my long-view to three months instead of three years, the fewer temper tantrums I need to throw. My expectations of life as a cancer babe might be growing up.

My hair looks a disturbingly lot like this.

photo courtesy http://www.dcrw.org

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Caller ID

May 20, 2010 at 11:37 AM (after chemo, Faith, Treatment) (, , , , , , , , , , )

“Private Caller” is seldom a good sign. It’s usually some telemarketer totally flouting the FCC regulations that specify that our number is on the do-not-call list and making my marketer husband hot under the collar.

Or it’s The Cancer Factory. Which is was this morning. And not only just the hospital, but my actual oncologist. The day after a scan.

::cue ominous music: dum Dum DUMMMMM…::

Right. Pelvis and abdomen stable, she began. (Always lead with the good news.) Lung tumors progressing. (Ah, there it is.) Slowly, but progressing. Which, frankly, I’ve known for about three weeks. Ever since the allergy season started, I could tell.

Cancel the cytoxan. Bring on the PI3-Kinase inhibitor trial. They’re holding a spot open for me (let’s say it again: thank heaven I’m in Boston!), so as soon as my cytoxan wash-out (4 weeks) is over, I’m in like Flynn. Unless my tumor tests positive for the B-RAF genetic marker, in which case I would be eligible for that trial. And we all know how I love making important decisions. (Or maybe you don’t: when I used to have to choose between A and B, my mother would write each option on a piece of paper and mix them up behind her back, then I’d choose a hand. And invariably want the other option more. Pathetic.)

So we wait. Again. Lovely.

Maybe without the cytoxan I’ll have a little more energy for OMG! this weekend.

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Cancerversary

May 19, 2010 at 11:34 AM (after chemo, Faith, Family, friends) (, , , , , , , , )

A lot can happen in four years. A college education. Marriage and a baby. A vast improvement in a hack tennis-player’s backhand (I hope).

A complete rearrangement of priorities, expectations, and attitudes. Oh, and internal organs.

Four years ago today I had my first surgery. Apparently, everyone but me knew it was going to be cancer. Not sure whether I was naïve or doing ostrich impressions, but there it is. The world changed.

I’d love to give you a neat list of all the things that I’ve learned since 2006. How to look for the silver lining; how to treasure each moment, to live in the present. But most days, I don’t manage to do those things, just like any other person. It’s only in hindsight that I (or anyone else) realize how fun/special/poignant each moment is, good or bad, painful or blissful, alone or together.

I have, however, discovered that inside my laissez faire, go-with-the-flow semi-slacker self lies a bit of a lioness, fiercely protecting my family from harm and loss and managing to eke out a few more years for myself in the process. Revelatory? Possibly. Hard? Definitely. I cry every week, but that’s still outweighed by the laughter. Which is actually a pretty good measure of any life, sick or well.

Here’s to four more. Thanks for listening.

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Panic On The Streets of *mingham

May 17, 2010 at 12:01 PM (after chemo, Faith, Recovery) (, , , , , , , )

WARNING: There will be a mild amount of “sharing” in this post. Read at your own risk.

I woke up to the alarm this morning, awake and ready to go to the gym. Ungodly early, but apparently I got enough sleep last night because I didn’t feel tied to the bed. As I was having a quick pee, I sneezed. And my intestines, right in the region of my ileostomy and reversal, started making a funny noise. It sounded a lot like it did when I had the ostomy: sort of a squirty, bubbling sound that I hadn’t heard since then. The noise repeated, again and again, for about thirty seconds straight.

I panicked. I knew this was the bowel perforation I had so skillfully (through no action of my own) avoided since starting the Avastin. That with my sneeze, some aneurysm of my small intestine had finally popped, and I was doomed. Maybe the recent onset of fatigue has made me jumpy. So I did what any normal, freaked-out, cancer patient would do: I called my doctor.

Fortunately, she was awake, and called me right back. She talked me off the ledge, and reminded me that, no matter how recently the perforation had occurred, if I were actually experiencing one I would also be in excruciating pain. Which I was not.

So, faith shaken but restored, I put on my sneakers and headed to the gym. With my phone in my pocket. I’m not really sure how Mr. W managed to get back to sleep, but he did.

Now that my panic has faded, and I’m trying to squelch my embarrassment at escalating a series of gas bubbles to a medical emergency, I have a little time to think about why I got so worked up. It’s not like me to jump to the worst possible scenario when something weird happens; I usually find logical excuses for what’s going on and wait for more evidence before calling in the troops. (Possibly why we find ourselves in this mess to begin with.)

Which means that I’m less emotionally stable than I initially appear. Clearly, four years of this process have rocked my sense of stability enough that I’m more Chicken Little than hakuna matata these days. Sometimes I really feel the fact that I’m living on borrowed time, and that at any moment the blow might strike that precipitates a cascade of medical whatevers and sucks me back into the depths of being a reallysickcancerpatient. I don’t want to feel that way – I want to be making the most of every minute, living life to the fullest, not waiting for the other shoe to drop. (I figured since I haven’t entered remission, I get the luxury of not having to wait for that.)

And yet. Deep under the surface veneer of high-functioning girl-in-treatment lies a wavering doubter who’s got her hair-trigger finger on the on-call button. I wonder how she’ll do with the results of Wednesday’s CT scan.

Sort of a lot, really, to try to get out of an early-morning workout, dontcha think?

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‘Cause You Gotta Have Faith(?)

March 10, 2010 at 8:42 PM (Faith) (, , , , , , , )

A friend posted an article today about how most Americans think God gets involved in what happens in their daily lives. One in three of the surveyed respondents agreed with the statement that “‘There is no point in planning a lot because ultimately my fate is in God’s hands.'” Once I’d recovered from my initial shock at the statistics, I read some of the comments at the bottom. Which proved to me that: a) NYT.com readers are either cynics, or liberals, or both; and b) the pollsters whose data is represented in this article were not asking questions in Manhattan.

I also started down the long path I’ve been on a few other times since 2006, about where my religious flag should be planted. Raised in the Protestant tradition but with an overarching sense of scientific skepticism, I did the whole Sunday School thing, and even confirmation and Youth Group through high school, but more to meet boys (yet another bonus of single-sex education) than for any church-y stuff, which made me more than a bit uncomfortable.

There’s probably nothing that’ll get you thinking about God quicker than a serious illness. Not so much when I was first diagnosed, but definitely when I found out about my first recurrence; I was making deals with God (or whoever) like Monty Hall on speed. Just one more month and I’ll never ask for anything else. Just one more year with my kids and I’ll never complain again. Just let me see them into middle school and I promise I’ll enjoy even the crappy weather. Just let me make fun of them at their rehearsal dinners and I promise I’ll go quietly. But I wasn’t really sure who I was petitioning.

And I can’t really tell you that I believe my bargaining worked. I get surgery from one of the best gyn/oncs in the Northeast, and I get medical and chemical treatment from one of the top cancer centers anywhere. Do I think God guided me to live in Boston? Um, no, that was a cute guy with a great smile. Do I think there’s some mystical, divine force behind my getting sick in the first place? Wow, I hope not. Lord knows (sorry) I don’t think that whole “You only get given what you can handle” thing holds any water, because there are people who get sick who can’t handle it. They’re also deceased. And I don’t think it’s fair to those of us who pull ourselves out of bed by our wigs every day and march onward, for our families, our kids, our sanity, to say it’s all in God’s hands. That’s selling us a little short.

This summer I had a long conversation with the Reverend who is the head of the church I got married in; I wanted to put a more adult spin on my views than my previous what-I-think-about-God chats, which were brief, giggly, and in the ’80s. Maybe I was looking for proof (I know, that’s not what happens – that’s why they call it “faith”), or an explanation of how this stuff can happen, or validation that it’s okay to be confused. The result of our hour-plus-long chat was…hmmm. He didn’t try to get me to make up my mind, which I appreciated. And he didn’t try to convince me that this was all part of some grand plan, which I appreciated even more. I’m certainly not any closer to understanding how some people can so blithely relinquish control of their fates and responsibility for their actions to a divine being that no one can ever prove exists.

So for now, I’ll continue to put my faith in the vanguard of western medicine, top-notch whole food, vigorous exercise, a healthy dose of laughter, and a good under-eye concealer. But if I make it to my kids’ rehearsal dinners, I hope I don’t have to go apologize to someone. Not a big fan of crow-burgers.

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