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 My vision of flowing locks has been replaced by persistent brown Nancy-Reagan-head and the cruel fact that no one checks me out any more, because I look like their mom.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.
My hair looks a disturbingly lot like this.
photo courtesy http://www.dcrw.org
How To Help A Cancer Patient, Part II
With apologies to the layperson, this post is full of advice for patients.
I was never a product junkie. While I like makeup as much as the next girlie-girl, I can’t bring myself to pick up the latest eye shadow colors every season, nor to drop serious coin (which could be better spent on clothing or leather goods) on department-store or boutique cosmetics. Basics are really all I need, and a few hair products.
Any cancer patient will tell you that this just can’t be. Whether you’re stocking your medicine cabinet with countless orange bottles to counteract the side effects of your side effects, or piling on makeup to cover your ghostly pallor, the best home improvement dollars spent in my house would be to supersize the master bathroom to hold all my crap. (In my defense, it is only slightly larger than your average phone booth.) And while it may be hard to keep track of all the funny names on the orange bottles, and remember what product to apply to which body part and when, some of the jams and jellies I have found to be real lifesavers.
Skin
Depending on which treatment you’re receiving, your skin can be sensitive, ashy, dry, flaky, greasy, or broken out. I was lucky enough to encounter all of them, often simultaneously, which made amelioration a sophisticated juggling act. For my extra-dry body skin, I was given a sample of LindiSkin Soothing Balm. LindiSkin is a company that offers a range of products specifically created for cancer patients. Light on chemicals and gentle on sensitive skin, the Soothing Balm restored my so-dry-I-itched-til-I-bled skin last spring with a gentle scent and no trace of irritation. They also offer a range of facial products, although the rich Serum was too rich for my face. But the lotion is delightful, cancer or not, and the company’s dedication to cancer patients is impressive.
I also found solace for my cracked feet in a tub of good ol’ Bag Balm. Yes, sleeping with the air of lanolin issuing from your cotton socks may put the damper on romance, but so does having ogre feet. A week of regular shower-pumice-plus-lotion-under-socks, morning and bedtime, dials back the winter feet to survivable levels.
My fingernails are so weak that I can’t even squeeze a zit, but the short length gave me the courage to try some wacky colors for fun. Pedicures are practically a medical necessity, and I find that lying in bed staring at your feet is much more fun if your toes look cute. Treat yourself.
Cosmetics
When you’re pallid and ashy with those tell-tale red rings around your eyes, there’s really no way to avoid catching sight of yourself in the mirror and feeling sick. So when you have the energy to stand up in front of the mirror for five minutes, I highly recommend painting some life back into your cheeks. Start by evening out the discoloration (age, sun spots, all heightened by hormonal fluctuations) with a good tinted moisturizer. I love the combination of age-fighting and sheer color in the Olay Definity Color Recapture. One step takes half the effort of two! Add a gel blush (powder just emphasizes the ashiness of chemo skin) and some mascara, and you look twice as alive as you did before you started.
Brows and lashes gone? I wish I had a magic-bullet solution, but there’s really trial-and-error required to find what works best for you. My first round of bald-face, I got a comprehensive eyebrow kit from Anastasia and used the stencil-powder-wax combo, which does a pretty good job of staying on all day (until naptime, anyway). Last summer I used a perfect-taupe eyebrow pencil from Sonia Kashuk, but for some reason my eyebrow sweat glands (who knew we had ’em?) kicked into overdrive and I reapplied about six times a day. The pencils are sprinkled all over my house and car and purses. For my lashes, I compensated with a tapered line of dark-brown eye pencil on the top lid, since there was no way I could make a line of falsies look like anything other than a caterpillar parked up there. I like the Revlon ColorStay because it lasts most of the day, but really, there’s no way to hide the lack of eyelashes. I missed them the most.
Hair
I’ve heard lots of anecdotal stories that chemo hair grows back in curly on nearly everyone. It certainly has for me – I’m trying to decide if I like it better than baldness. Anyway, I have an enormous collection of different hair products for the many lengths my hair has been over the past four years. Gel for the slicking-back of humidity-one-inch ‘fro; waxy pomade for a little control of the two-inch-straight-up-not-quite-curls. The gold standards for all styles, though, are the Frizz-Ease line. I use the shampoo and conditioner, but use your favorites. Start post-shower treatment with the serum no matter what the length; it keeps down the frizz to manageable levels. I’ve got long-enough hair now that I can use the Curl-Perfecting Spray, too – it definitely make the curls cool instead of Napoleon-Dynamite crazy. NO HAIRBRUSH in the curls, EVER. Got it?
Next, we’ll talk about lifesaving products for your innards. Got any favorite skin/hair/face products to share?
How To Help A Cancer Patient, Part I
Low Simmer
Lying around and growing tumors is hard work – I’d forgotten how much it takes out of you. I’ve been drug-free for two and a half weeks now, and I can feel the evil creeping up. Which gets a girl to thinking: thank heaven for modern medicine. How much time would I have without the upcoming trial? Six months? Four? What would my quality of life be? Yeesh.
Fatigue is a constant companion now – I feel like I’m wearing a diving weight belt around my waist. Going to the gym is a bit of a farce, and if someone hadn’t invented the Chuckit!, I think my dog wouldn’t be speaking to me anymore. The cat, on the other hand, is so glad to have me back on the lazy side of the fence.
My trial coordinator said that they are getting “encouraging” results from GDC-0941, and my oncologist is “very excited” to get me on board. I have a full day of tests (EKG, CT, blood tests, urine culture, etc. etc.) set up for today, and then I start the trial on the 21st. I’m feeling optimistic, but wondering how much progress the tumors will make by then. I hate to give up any ground from my chemo of last summer – it feels like I’m betraying the hair loss, fatigue, and all the side effects I went through to “let” the tumors grow back. Especially since I currently resemble Mike Brady. Yea, hats!
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.)
Hair Envy
As I’ve said before, baldness didn’t scare me this time around. I’d been through it before, had a DYNAMITE wig, loved the ease with which my morning routine rolled along, and relished the break from shaving, plucking, zits, etc. (Yes, the shiny-face-in-photographs thing was annoying, yes, sweating off my eyebrows six times a day was tedious, but they all beat being dead.) But as a (prematurely) post-menopausal female rapidly approaching the big 4-0, I could use all the feminine beauty mojo I can get. Baldness, and the subsequent Death-Valley-Ultramarathon that is growing out curly hair, eventually loses its silver lining and gets just plain cloudy.
So watching these twenty-something robo-babes and their semi-professional hair-flipping contests is starting to bum me out. Maybe it’s because I still think of myself as looking like them (at least in the respect that we’re both female) and when I catch sight of myself in the mirror I look SO unlike that now that it’s shocking, even more so than seeing my formerly Yul-Brynner self after a shower. I think of myself as having hair now, and this? Is so not it.
I think we need a Bald Channel. The King And I; the Star Trek with the bald chick in it; G.I. Jane; Shaft; the Natalie Portman movie where they shave her head; Kojak reruns. Ernie and Bert marathons. There could be made-for-tv movies about alopecia so chemo patients could understand that they’re not alone in the world, starring LeeAnn Rimes. Cancer patients all over the country would flock to the advertisers: moisturizers, wigs, great hats, Sephora tutorials on eyebrow and eyelash application.
Oh, great, like I don’t have enough projects already.
Cold Food, Hot Dude
Trader Joe’s was pretty crowded for 7:00 on a Friday night (I know, I’m a real social butterfly), and I pulled my hat off when I walked in the door. (The fur-lined aviator hat is warm, but a little goofy.) Since my hair has gotten longer, it’s really itchy to wear my wig, so although it looks awesome, I’ve started going out without it. My hair is reeeeeeeally short, and it’s still pretty obvious that I’m growing it back from nothing; at Target today it got a lot of curious looks. I was a little self-conscious about it, but what the heck. My head is cute, my makeup is good, I’m rocking it. So people were doing double-takes tonight as they caught sight of my close crop. (I’m learning to live with the attention.)
Down at the end of the fresh foods aisle, a solidly-built gentleman was looking at cheese. Salt-and-pepper hair, Henry Rollins build, basket of groceries, and a kilt. With a sporran. And knee socks with the little ribbons. Big black brogues, a vest, and a bow tie. Awesome. He had a furrowed brow, as if he couldn’t remember what he was there to buy, or couldn’t find the right aisle for it. He looked very serious, and although I tried to catch his eye to smile, he was focused on his task.
I finished my shopping, checked out, and as I was pushing my cart out of the store, I noticed him walking across the front toward the register I had just left. I decided to take a chance that he had a sense of humor under that fierce demeanor, and as I rolled past him, I leaned over and said, “I’m glad you’re here – I thought I was going to be the one who got the most stares tonight.”
His face lit up and brightened from the center outward, revealing a radiant smile and twinkling blue eyes. He laughed as I rolled out to the parking lot.
Post-Chemo Brain Reboot
It’s really amazing how my life has changed since October 8. I guess I’ve been on chemo or some other drug for enough months out of the past four years that I got used to being dulled around the edges. Like the aerator grill in my faucet had filled up with sediment, and the water that flowed was slowed to a trickle.
I’m not sure how much of my mental slowdown can be attributed to chemo brain and how much was due to my persistent, really frustrating fatigue. Anyone on chemo will tell you that forgetfulness becomes a way of life, and that you should probably put off your appearance on Jeopardy! until your hair grows back, if you’re really serious about winning. When you’re chemo-tired, and living your day from one sleep to the next (and there were definitely days like that), the last thing you have the energy for is coming up with a good blog topic or a killer craft to rock the next birthday party. But there’s also the possibility that the ass-kicking-name-taking process took most of the mental focus that I had outside of the eternal “what’s-for-dinner?” dilemma, and I completely lost all memory of being a smart person.
Now that I’m on the miracle drug, and my hair is growing in, and my body is (mostly) back under my control, it’s as if someone has CLR-ed my faucet and the water is running again. I wake up in the middle of the night and start thinking of things I’d like to do. Projects I’d like to complete. (Not just start, but complete!) Dishes I’d like to cook. Things I could make for Christmas presents. Stuff to write about. And when I wake up in the morning, I can actually remember the things I thought of in the dark.
I’m almost overwhelmed at the different trains of thought that I can keep track of at any given time. My mental soundtrack has been one or two notes simple for so long, I’d forgotten what it felt like to hear the full melody, harmony, counterpoint and rhythm rolling along with it. And far from being confused by the din, I’m enjoying hearing all the different notes, thinking about them individually, planning how to work on them, maybe even discarding them and moving on.
I’m not promising global domination, nor that my sedentary tendencies have been banished for good, but perhaps I’m starting to fit into these grown-up shoes I’ve been wearing for three-and-a-half years now. At least I’ll be better company at cocktail parties. And Alex Trebek should be quaking in his boots.
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 
