October is Cancer Awareness Month – Pass it On!
Awesome Ann from “Breast Cancer? But Doctor…I hate pink!” has a new campaign – check out her amazingly generous idea, and spread the word…
Wouldn’t it be fantastic to have teal and pink ribbons twined together next October? Or rainbows? The internet is a powerful place.
It’s September…How Are Your Ovaries?
I’m reading a book about how making split-second decisions from the gut can be just as effective (and in some cases, more so) as examining copious evidence and making logical, scientific decisions over time.
Wish I’d known that in 2005. Maybe then I would have listened when my body started shouting at me. “Hey! You’re tired! More so than the average mom-of-two-little-boys!” “Yo! Down here! You’re not gaining weight, you’re bloated!” “Run, don’t walk, to the bathroom – bladder pressure overload.” And “No, it’s not the protein bars – your bowels are NOT happy.”
All symptoms of ovarian cancer. Classic symptoms, as a matter of fact. Like, textbook. But I was sure that there were logical explanations for all of the things that were going wrong with my body, including the pelvic pain, which I convinced myself was a functional cyst, since it hurt worse when I was ovulating.
If I’d known more about what the symptoms of ovarian cancer were, if I’d known that HALF the women diagnosed with ovarian cancer are under age 60, I might not have convinced myself that I was too young and healthy to have anything really wrong with me. I might have gone to see my doctor in December, when I first noticed things feeling…different. Nothing I could really put my finger on, but my instincts recognized changes before my rational brain did.
Over 21,000 women will be diagnosed with ovarian cancer in 2010. 13,000 will die from the disease. I’ll fight that second number, but I need your help with the first one. Let’s increase our vigilance about ovarian cancer, even as we lobby for research funding and to get more doctors to take our symptoms seriously.
Let my 20/20 hindsight help you or a woman you love be aware of the symptoms of ovarian cancer, so you (or she) will get checked out by a gynecologist as soon as you experience them, and get treated early enough to get on the 85% five-year survival side of the statistics, instead of the 35% side where I am.
I know I make ovarian cancer look good, but this is one club you do NOT want to join. Tell a friend. Or thirty.
I Got The Fever
Jeez, just when you think life is getting a little predictable.
Week 4 of Cycle 2 snuck up on me. I was pleasantly surprised to discover, at my Monday appointment last week, that it was my week off of the Magical Mystery Drug. Skipping home an hour earlier than expected, with food in my tummy and a song in my heart, I anticipated a light and relatively carefree week of getting back into shape, tasting my food and drinking cool fresh water, spending time with my boys, and a long-anticipated family reunion weekend on the beach full of champagne, good company, and steamed fresh lobster.
Ha ha, said the universe, guess again.
Monday night at around 9:30, I started feeling like I was getting a fever. That’s weird, I thought, I don’t get sick. (Well, apart from the obvious.) Checked with the thermometer: yep, 101. Tylenol PM, bed. Tossed and turned all night, but by morning, it was gone. Felt better Tuesday morning, although not well enough to make it to yoga. No sign of fever, until about 5pm. After checking in with the team, they said if the fever went away that evening with two Advil, I was okay, but if not I should come in to see them Wednesday. Which of course I wanted to avoid like the plague.
Wednesday dawned sunny and fever-free. The boys and the dog and I spent the better part of an hour and a half in the woods hiking, feeling pretty smug. Until I lay down for my nap, and felt the fingers of fever starting to creep up my neck. I ignored them and tried to go to sleep, but I knew it was futile. Called the team and they said, “Come on in.”
Which is always fun with two kids. But they were fed copious amounts of bagged snacks and watched the Cartoon Network while I saw everyone, peed in a cup, gave blood cultures from port and periphery. I stumped everyone with my lack of symptoms, but that night the fever was back again.
And Thursday night. Good news: Mr. W makes dinner and cleans up from it. Bad news: Friday morning I get a call that I have a UTI. A UTI? With no symptoms? Oh, yippee, back on high-grade systemic antibiotics again. And they do nothing to kill the fever.
So I muscled through Friday and Saturday with nightly fevers, the usual fallout from antibiotics, and no energy. It was great to be on the beach and see family members from far and wide, but I wish I’d felt well enough to enjoy it.
And when I’m sick-sick, not just chronic-sick, nothing else gets done. No reading, no exercise, and as you might have noticed, no writing.
Let’s hope this… whatever is gone by tomorrow, so I can deal with a day at the hospital, the fallout from CT contrast, and more Magical Mystery Drug. And write about something a little more interesting than boring crap like my internal temperature.
Extended Stay
A very dear (and possibly quite intoxicated) friend emailed me this afternoon with a link to Christopher Hitchens’ beautifully worded essay about his cancer diagnosis, saying it reminded him of my writing. While I am highly flattered, and definitely aspire to that level of proficiency (not to mention professional success), the essay did strike a number of chords.
Hitchens speaks of the discovery of his illness as “…a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” This international one-way trip is the most shocking transition, especially for people (henceforth known as “patients”) who were previously healthy and unencumbered by medical interventions any greater than the occasional Advil. With diagnoses like ovarian cancer, what you think at first will be just a brief visit turns out to be a longer stay, with an extendable visa that might last the rest of your life.
For the past few years, I’ve envisioned myself as I always was: a mom, wife, cook, fashion fiend, friend, sister — exercising, writing, cleaning, driving, living my life — who also happened to have cancer. This summer, however, the paradigm has shifted. Now I feel like I’m a cancer patient who also occasionally writes, walks the dog, folds laundry, and makes dinner. My treatment and attendant side effects have gotten more insistent, more interruptive. I have to have my daily meds, straight from refrigeration or a cooler, at the same time every day. Within three hours, I need to be near indoor plumbing. By mid-afternoon, I need a nap. Water tastes horrible, so I have to bring my own beverages. Comfy shoes. Short walks and a place to sit down. (I’m starting to sound like my grandmother. Who’s 103.) I can no longer be the same person I was in that other country.
A part of me longs for the early stages of my illness again, that optimistic sense of purpose and determination, the adrenaline-charged vigor of the attack. Like a Saturday morning, the future was still hazy but full of potential; the fear of the unknown can be enervating but at least it’s a plan. Hitchens is starting chemo for his esophageal cancer, and I wish him health and strength to get through the journey. I miss the innocence and blind optimism and faith in medicine that carried me through that first summer with cancer. But the wisdom and perspective of the ensuing years I wouldn’t trade for anything.
Okay, maybe a clean CT scan. Or a book deal. Hitchens? Throw me a bone, eh?
Photo credit here.
Cancercoaster
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.
Back Seat Driver
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.
photo courtesy http://www.dcrw.org