‘Cause You Gotta Have 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.
Hero Worship
I got to meet Kelly Corrigan today. You know, she wrote The Middle Place. (If you haven’t read it yet, do so. Quickly – I’ll wait. Well, maybe not.) She grew up in the same place I did, and we have a mutual friend, Lisa, who was plugging Kelly’s new book on FB yesterday and hooked me up with the reading today at a local library. The moment she walked into the room, I felt like I had met her before, or knew her from somewhere. (I’m sure I wasn’t alone.)
Kelly was diagnosed with breast cancer in 2004. She was 37, and her daughters were 2 and not-yet-4. (Sounds strangely familiar, right?) Anyway, I won’t spoil the story for those who haven’t read it, but I will tell you that when I read The Middle Place the first time, it certainly relieved me of the pressure of having to write my own cancer memoir. Sure, the tumors were in different parts of our bodies, we live on opposite coasts, and her tale takes a different course than mine, but aside from that she pretty much wrote down every thought that was running through my head that first summer of treatment. My knee-jerk impulse to careen home and curl up in my mom’s lap. My realization that the world was not nearly as forgiving a place as my life to that point had led me to believe. My constant search for the best words to use in mass emails to strike the balance between accuracy and upbeat optimism, so as not to get anyone down (and ensure plenty of replies). My awe at the way my husband stepped up to the plate to maintain some semblance of order over chaos. My fear of how every moment of my illness was affecting my kids.
Kelly read from The Middle Place and her new book, Lift, a small but laser-sharp review of her daughters’ little-girl years, which she wrote so they would remember more than Kelly had of her own early youth. She explores so many of the hidden joys and pains of parenthood, and made me want to write down more of my own boys’ moments, knowing my own terrible memory and feeling the need to share their trials and triumphs with them when they’re older.
Quick-witted and smart, the more Kelly spoke, the more I understood why her books and her essays are so well received. She said herself that she “walks a fine line” of not-having-really-bad-stuff-happen-to-her (no plane crashes, alcoholism, crushing poverty) but still speaking to everyone in common sentiments. Her humorous take keeps the mood light enough that you want to read more, but the love that is so evident in all of her stories, whether about her own daughters or just dear friends, carried all of us in the room right into her lap.
So of course I had to say hello, and our mutual friend had given me a name to drop. I told her how she had written the book that I was going to write, and she laughed graciously. I’m sure I gibbered on, unable to get across how truly aligned I had felt with her own reactions, making my career as a wordsmith seem a bit misguided. I only hope that I didn’t embarrass Lisa too much.
Maybe when I get to meet Jude Law some day I won’t sound like quite so much of a starstruck schoolgirl. Then again, he hasn’t read my mind. Yet.
Kids Say the Darndest Things, Vol. II
Well, husbands do, too.
Mr. Wonderful will be running a relay marathon in May, from Boston to Provincetown in two days or some such madness, up all night and riding in one of two vans with eleven soon-to-be-war-buddies while carbo-loading. Some of the group met for a pre-race strategy session/beer tasting at a local watering hole last week, which gave the friends-of-friends a chance to get to know one another.
My friend-whose-idea-the-team-was sent me a message after the meeting was over:
“Last night we were finding out how many at the table were divorced or divorcing (5 out of 7 – yikes!) and Mxxx asked [Mr. Wonderful] if he was divorced and he sweetly said, “No, I’m trying to hold onto my wife as long as possible.” =) Go give him a big fat hug and kiss!”
::sniff, sniff:: He’s the best. I’m a lucky gal.
(It’s okay to go barf if you need to.)
No Flatline On The Horizon
After 24 hours of jitters and bootless speculation (none of it in the wee small hours of the morning, thank goodness), I had my appointment at the Phase I Clinic. And while I was more than a little cheesed to discover that my oncologist had not actually conferred about my current state of affairs with the trials doctor I saw today, his description of the trial-drug landscape was enough to make me forgive her.
There’s no way to tell which trial will be available to new patients in four weeks (the length of time I need to wait after my last Avastin before I’m “clean” enough to start a trial), but between receptor inhibitors and protein inhibitors there are at least six studies that would be right for an ovarian cancer patient in my situation, and there are more studies opening all the time. And the doctor said that he has many patients who move from one study drug that’s not working for them to another, to another, to another until they get a good fit.
I’m still really uncomfortable about all the uncertainty. Will my onc choose to continue the Avastin and add another drug? Will I go on one of the studies? Oral meds or IV? Once a week or twice? Paper or plastic? Aisle or window? Hair or no hair? Fatigue or no fatigue? It’s frustrating to think of going from as strong and healthy as I feel right now to being exhausted and feeble again. I deal so well with this nebulous future.
And now that I think about it, for me and for all cancer patients, the most unpleasant part of the decision-making process lies between the discovery of bad news and the inception of a new treatment plan. Between the bad CT scan and the surgery date. Between one plan of action and the other. As you may have heard, the waiting is the hardest part.
At least it looks like the future is a little brighter than it was yesterday, even if getting there is going to take a while. Roll with it, baby. More info to come after next Thursday’s appointment.
(With apologies to U2, Tom Petty, and Steve Winwood.)
Free Happy
Okay, grouch-break! Free happy:
- toddler giggles
- grey rainy days in october when the woods glow with yellow maple leaves above wet, black tree trunks
- waking up early and realizing it’s saturday and rolling over to go back to sleep
- getting into a warm sunny car on a cool day
- hot showers
- full-body hugs
- warm brownies with vanilla ice cream (okay, that’s not free but it’s accessible)
- watching my dog play with a stick the way a cat would, tossing it and barking at it
- sitting down to dinner with my family every night
- using a big word like flaneur or schadenfreude accurately in a sentence
- someone else emptying the clean dishwasher
- the sun-sparkles on freshly fallen snow
- my boys being old enough to play a board game for 2 hours without parental intervention
- four words: nap on the beach
- youtube
- how quiet it is during a snowstorm
- hanging with friends that really get me
- diving in and swimming underwater from one end of the pool to the other
- The Daily Show
- new magazines (again, not free, but close)
- human-free inter-species friendships:
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- seeing plants starting to push up out of the ground in my garden in the spring
- re-reading a childhood favorite book with my kids
- personal snail mail
- cicadas and owls in my woods at night
- did I mention brownies?
Have any of your own to share?
Feelin’ Funky
I kinda spent the weekend moping. Not off-by-myself, staring-at-the-TV, gorging-on-chips moping, but quiet reading, contemplation, unusual lack of exercise. I even vacuumed.
I don’t want to say that the results of the scan have gotten me depressed, but they threw me for a little loop, more than I would have expected. I guess I’ve been feeling so fine on the Avastin that I started to get a little cocky, and as anyone can tell you, that’s a sure sign of a fall waiting to happen. It’s not as if I’d stopped worrying about it (“Just say it, wimp, ’the cancer’”), MY cancer, but it had receded to a place where I was actually thinking about learning about a new job, going on a kayaking adventure trip and feeling strong, planning summer trips and activities and not worrying about exhaustion or side effects.
Now, it’s not as if I’m going to keel over next week. The tumors are in the one- to three-millimeter range, and won’t impact my lung function for another six months or so even if we do nothing about them. And I still have lots of options for treating them. But as I was making pizza dough on Saturday, it hit me: some clinical-trial med they put me on might have hideous side effects. This might be the best I feel for a while. And before I could stop myself I took a little march down memory lane: summer 2006, unable to climb stairs without a break; nannies; supporters delivering meals. Mom trekking up here ten out of every 20 days to help run my household. Bald, rotund, shredded.
I feel like Mike Myers on SNL when he played that little hyperactive boy Phillip tied with a leash to the jungle gym: no matter how I try to get away from the damn cancer, eat right and exercise my feet off and do yoga and live in the moment and play with my kids and take tennis lessons and plan kayaking trips and chairing committees and all of it, I’m still tied to this effing jungle gym.
At least I look better than Nicole Kidman’s duck-lips.
Two Steps Forward, Three Steps Back
Have you ever had that dream where you’re running, something’s chasing you and you’re running as fast as you can, but no matter how fast you move your legs you don’t go anywhere? Yeah.
Got the results of the CT yesterday. (You see where this is going, don’t you.) The Avastin is successfully holding down the pelvic tumors – they’re even smaller than they were in November. The lungs, however, don’t seem to be getting the message. Old (tiny, glacially progressing) nodules have grown a millimeter or two; new subcentimeter nodules are appearing. No lymph node increases, nothing in the abdomen or bones. But those lung guys, off by themselves, clearly on their own program, making trouble.
I’m working on my optimism, but today it feels like my balloon is a little deflated. I know all the things I’m doing to take care of myself, exercise, diet, good attitude, and all the things my medical team are doing to take care of me, scans, great medicines, oodles of treatment options, are the best in the business. Seems the glacier’s gonna carve that canyon anyway.
The Avastin will continue; I’m meeting March 1 with the head of the clinical trial department to see if there are any open studies looking for a guinea pig who’s totally healthy except for the damn cancer. Let’s hope the nasty make-your-hair-fall-out-again studies are all full.
One thing’s for sure, I’m going shopping with my usual post-tax-return IRA deposit this year.
Non-Cancer-Patients Have Feelings, Too
Before I was The Carcinista, I was known as the Fashion Nazi. Working hard at building a style consulting business, I was the go-to gal for advice of all sorts (“I have this wedding to go to…” or “Gee, how about we go to the mall this weekend? I’m looking for boots…”) and quite popular when friends or acquaintances wondered if this outfit made them look fat/out of date/mutton-dressed-as-lamb. Clients streamlined their wardrobes and lost fifteen visual pounds/years. Fashion review columns flowed from my fingertips. Withering red-carpet reviews became my calling card.
The downside, apart from wasting countless hours lost in W and on style.com, was that in social situations, good friends and new acquaintances alike were constantly apologizing for what they were wearing. “Gee, Kate, if you’d told me Sarah was coming to the party, I would have dressed up!” I tried to explain that unless they were my clients, their appearance was their own business, and it didn’t matter to me what they wore, but I guess Clinton and Stacy’s reputations preceded me. No matter how much I reassured them, there were always sheepish mea culpas for all-black outfits, comfortable shoes, or un-made-up faces.
Now that my public persona has shifted a bit, although I’m still the sassy style arbitrix I always was (with occasional forays into the yoga-pants-and-oversized-sweater look on schlumpy days), I’m still getting bowing and scraping from people. Only this time, they’re apologizing because I have cancer. Everyone has gripes. Everyone has a lousy day, a sore muscle, a bad cold. But no one feels like they can tell me about it, because my cancer trumps any other life gripe.
Thanks, everyone, I appreciate your…what, grasp of reality? But it’s all relative. My reality is mine, and your reality is yours, and if you’re sore from shoveling snow, it’s okay to complain about it. I promise I’m not thinking, “Wow, what a selfish bitch she is, grousing about sitting in traffic; I have CANCER!” I actually got back in contact with a dear friend after a too-long hiatus, and she told me she hadn’t called in over a year because she’d been having confusing medical problems but they didn’t hold a candle to mine, and she hadn’t wanted to complain. Are you kidding me?
Look, kids, you love me, scars and all. And I love you, baggy sweatshirts and all. And I want to know what’s going on in your lives because I care about you and how you feel. So complain about the flunky at Starbucks who screwed up your chai. Cancel our playdate because you have a headache. There’s no measuring stick for a crappy day.
Just don’t tell anyone I dress you if you wear that out in public.
How To Grow A Tumor
You know how once you finally hear the new song everyone’s been talking about, you start to hear it everywhere – in the mall, in a commercial, in line at the supermarket? Since I started this little anti-white-poisons kick a couple of weeks ago, I’ve been hearing a lot more about food as anti-cancer medication than I ever have. And while I’m not sure that I’m onto something unprecedented and groundbreaking, there are links worth sharing, and I’m wondering why more people don’t.
When I wrote that I was cutting out sugar and white flour, one reader encouraged me to look not only at the sugar content of my food but also its place in the glycemic index, or how quickly the body turns it into sugar, and raises blood glucose levels, once I’ve eaten it. Her argument was based on the book Anti-Cancer, by Dr. Servan-Schreiber, which admittedly I’ve yet to read. (As I said before, I’m a little wary of people espousing radical diets as a way to cure cancer, and having been exposed to some more…um, enthusiastic proponents of various whole-hog lifestyle changes in the past [with little or no effect] I’m one to ask questions first and shoot second.)
But I’m an open-minded girl, so I looked into the glycemic index and its effects on the body a little further. [WARNING: scientific content to follow! Bear with me - I'll try to keep it simple.] Raising the level of glucose (sugar) in the blood, which you do every time you eat, triggers the release of insulin in your body. Insulin breaks down and stores the sugar in your body for later use as energy. The higher the glycemic index of a particular food, the higher and faster it spikes your blood glucose level after you eat it. [Still with me?]
An increase in blood glucose also triggers the release of insulin-like growth factors (IGFs), compounds that play a role in the promotion of cell proliferation (more and more cells) and the inhibition of cell apoptosis (a cell’s self-regulating kill switch). In other words, with too much sugar in your blood, not only do some cells grow and multiply much more quickly, their automatic “time to die!” trigger is canceled.
Sound like anyone we know?
I’ve gotten my hands on some journal articles that have drawn a link between tumor growth and insulin-like growth factor (IGF). Some of them discuss the mounting evidence between the western, high-animal-protein, high-processed-carbohydrate diet and the increasing risk of cancer.(1) Others go as far as to draw direct links between high blood glucose, insulin and IGF and increases in tumor growth and decreases in tumor cell death: “Epidemiological evidence is accumulating and suggests that the risk of cancers of the colon, pancreas, endometrium, breast and prostate are related to circulating levels of insulin, IGF-1, or both.”(2)
So the short story is that too much sugar in your diet, and not just the classic “sweet” foods but processed grains, some fruits, basically nearly anything advertised anywhere, will spike your blood glucose, insulin, and IGF. And will fuel the tumors that you know about, if you already have cancer, or tumors you don’t know about, if you haven’t been diagnosed yet.
I’m just curious why my nutritionist at The Cancer Factory didn’t mention any of this when I met with her last year… You might want to pass this along.
[Thanks for hanging on 'til the end! I should probably reward you with a joke or something:
How many cancer patients does it take to change a lightbulb?
No one knows; they're too tired to climb the ladder!]
Tell a friend.
- Nat Rev Cancer. 2008 Dec;8(12):915-28. Insulin and insulin-like growth factor signalling in neoplasia. Pollak M. Department of Oncology, McGill University, Montréal, Québec, Canada. michael.pollak@mcgill.ca
- Novartis Found Symp. 2004;262:247-60; discussion 260-68. Nutrition, insulin, IGF-1 metabolism and cancer risk: a summary of epidemiological evidence. Kaaks R. International Agency for Research on Cancer, Lyon, France.
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 journey - sharing makes it all easier to take. And laugh at.
