Transformation, turning points and clarity in life.
Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month. I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.
For all you Carcinista fans, I think you will enjoy this. See it here.
Let us know what you think!
Be well,
Mr. Wonderful
Up In the Air
With apologies to Mr. Clooney (and if he’d like to drop by, I’d be happy to deliver them in person), this week has been the definition of “up in the air”. I’ve been to The Cancer Factory three times looking for a plan, and each visit has given a teensy glimpse of what my upcoming schedule could be, but also another question or two that need answering before any decisions can be made.
So if there’s any truth to that “chronic-stress-causes-cancer” thing, I’m fooked.
Today’s downtown journey revealed another medical truth: no matter how much iron you consume the night before, you cannot pass a failing hemoglobin test. (Although if you’re looking for an excuse to eat grilled grass-fed buffalo rib-eye and sautéed spinach with pancetta, garlic and shallots, which I HIGHLY recommend, I won’t blow your cover.)
Wednesday I met with the urologist, who aside from being a nice guy, said he could fit me into his schedule for my left stent any time, all I had to do was figure out when the Phase I gang wanted me to have it done and call his nurse to book it. But I couldn’t get an answer from the Phase I gang until my hemoglobin was re-tested; 8.9 was not the 9.0 the “sponsor” (Pfizer) needs it to be for me to start the trial.
Yesterday, despite the fact that I hadn’t called to schedule it, I got messages during my nap from: the urologist’s office, the anesthesiologist’s office, and the admissions department at New England Baptist Hospital (where the procedure would be done) all telling me that I was to arrive this morning at 10:30 for my stent insertion. So I had to scramble and check with Phase I – no, they wanted me to get a transfusion (for my pitiful hemoglobin) before I had the stent placed, and I couldn’t start the trial within two weeks of a transfusion, so “no-go” with the stent procedure for today.
TODAY, I had a re-check of the hemoglobin, in hopes that my yoga, steak and spinach had helped it rebound from chemo, but no luck. Still 8.9. SCRAMBLE again to find Mr. W (and get him to answer his phone) to pick up the boys from school this afternoon, so I can get a two-hour transfusion (starting at 3:00 PM, yaaaaaawn), so I can start the trial two weeks from Monday. Which, in case no one has noticed, is the 21st of December. I’m sure I’ll have TONS of time that week to be down here three days in a row.
What I still don’t know is when I’ll be having my stent placed, but now that I’ll have a transfusion on board, I hope they can fit me in next week. But not too early, so I don’t miss Mr. W’s company Christmas Party, the only one (pathetic!) we’re scheduled for this month. And not Wednesday, ’cause Mr. W’s in an off-site meeting all day. Guess it’ll be Thursday or Friday… maybe?
It’s still up in the air.
Clooney? On second thought, I’ll meet you in Como.
Hopefully Elisabetta will be out of town.
Photo credit here.
Speak Your Piece
I’m sure your inbox has been as crowded as mine, over the past six weeks, with emails from senators, the veep, even Barry O. himself, exhorting you to cast your vote this way or that, choose this candidate over that one, save our country from certain destruction at the hands of [insert opposing political party name here].
So I’ll keep this brief: make sure you vote today, and not just for the party you like best but for the candidates who will do the best job. And I don’t need to remind you of the importance of thinking carefully about the recent health-care legislation and its potential benefits for the illin’est of us, in terms of lifetime healthcare limits, pre-existing conditions, and coverage for the young adults under their parents’ policies.
Okay, I’ll get off the soapbox now. The most important point to remember is: if you don’t vote, you can’t bitch about them later.
Photo courtesy.
Health-Care Legislation: Good For Us?
I’m not a political junkie. I feel like the current slate of crap I have to worry about (chemo, dinner, second-grade projects, emptying pockets before laundering, my backhand, spring fashion forecasts) is full and engrossing enough that I really don’t need anything else in my brain. But I have kept an ear to the ground over the health-care debate, and I am very glad it’s over.
Except it’s not. (And let me just preface the following by saying that although I’m not an ignoramus, I do NOT have all the details of the plan neatly laid out in a flow-chart in front of me.) What I’m seeing is like a little plaintiff winning a big lawsuit against a major corporation: yes, the gavel went down, but the money is soooooo far away. States are filing suit; Republicans are heralding the end of civilization as we know it; Democrats are patting themselves on the back; retirees are sharpening their voting pencils; patients who need treatment NOW are still four years from a doctor’s appointment. Will more uninsured Americans get health-care coverage? Probably. Will the overall balance of people-getting-what-they-need-at-reasonable-prices swing into the positive? No one knows.
I love that insurance companies don’t get free rein to cancel coverage or raise rates the way they used to. But upon whose shoulders will they lay the cost of adding all the people they denied in the past? I’m guessing we, the payers. I have been quietly grateful for my outstanding insurance coverage over the past four years, and the fact that we’ve been able to see the doctors we want and get the treatments I’ve needed with only a couple of surmountable hiccups. Now I’m more than a little curious how that will change.
For those of you who had nothing, and need health care desperately, I share your excitement. I know that access to care is a huge problem for young cancer patients, and it’s beyond not-fair. I agree that some reform was sorely needed and I’m so glad we got some. I’m just going to hold back on my ticker tape scattering until more of the facts are in.
Are you celebrating today?
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.
Kids Say the Darndest Things, Vol. I
I was heading off for my daily kip when I realized that I had put the blanket and comforter from my bed into the wash, and they weren’t finished yet. Never one to let a minor inconvenience come between me and forty winks, I stopped by the playroom to ask my five-year-old if he would mind if Mommy borrowed his comforter to wrap up in for her Quiet Time.
He looked up at me with his big brown eyes, and in the sweetest, most concerned voice, asked, “Will it get cancer on it?”
You can’t make this stuff up.
Drat. Mom Was Right Again! And Here’s A Cornell Study To Back Her Up.
When we used to go outside to play in the snow, Mom always told us to put a hat on. We’d ignore her (hats were NOT cool in the ’80s – hard on the feathered hair or some such) and slog around for twenty minutes, then come inside complaining that our feet were cold. “If your feet are cold, put a hat on,” she’d say. What kind of fool sense was that? If your feet are cold, clearly you need better boots. With wedge heels and faux shearling peeking over the top. Or possibly we just needed hot chocolate.
Now that I’m a cancer chick, I’ve come to realize that there may be something to this “cold feet/body = cold head” thing. Without hair, I’m FREEZING. All the time. From mid-June to mid-October, I’m okay, but the rest of the year? Cold. Layers, and lots of them. One of the layers must be wool (ok, cashmere), including the socks, or I’m shivering. I have rediscovered the magic of hats (and thank Kors they’re fashionable again!), and wear one all the time, inside and out. (Side benefit of baldness regrowth: no hat-head!)
My constant hypothermia has become a bit of an inter-gender needling trigger chez moi. Mr. Wonderful, whose metabolism usually runs at a high boil, is comfortable in the house in a t-shirt and jeans, bare feet. Occasionally he’s been known to take the dog out in the snow in said bare feet. He’s comfortable with the thermostat set at 64 (financially as well as thermally). My boys are always complaining that when I’m cold I make them put on sweaters. I, as previously noted, am only really warm in a hot shower or tucked into bed in (dead sexy) flannel PJs and a (dead sexy) fleece hat. Oh, and please set the thermostat to at LEAST 67. Preferably 69. All three boys find my shivering amusing, and think I’m making my griping up (but have come to expect that I’ll get them with my frosty fingers in the ribs at least once a day).
Today, there’s proof for the ladies. I discovered that some researchers at Cornell have released a study that proves that bald people are colder than people with hair! That’s right, four Biological and Environmental Engineering students put sensors on the heads of test subjects and put them in a cold environment for twelve minutes. They already knew that the head is a major source (60 to 80%) of heat loss (Mom was right!). The test subjects with hats showed little difference in head temperature regardless of hair length or thickness, but subjects without hats showed much higher heat loss through the head if their hair was shorter than one cm, and once their hair length reached two cm it started adding significant insulation to the skin.
I don’t think my hair is two cm long yet, but even if it were, I’d still quote this study. Rock on, my hatted bald-chick peeps.
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.
