Alright, stop harassing me, I’m back.
A couple of items before I jump in:
- I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
- I hate winter.
The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.
I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.
Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.
Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?
That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)
And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.
Without this two months of feeling better, I might have missed this:
Tomorrow: Part II.
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
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.
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.
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.
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?
I was checking my stats and noticed that several hits from the past few days have come from “xmarksthescot.com”. An unfamiliar URL. I traveled there to discover that it’s a community of kilt-wearing scotsmen. I guessed they were amused by the tale of my Trader Joe’s encounter of last month, and discovered that someone had put a link to my story in a comment thread. When I navigated back to the original comment, look what I found!
The universe works in mysterious ways.
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.
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.
Sleeping in. Someone else roasting the turkey. Modern pharmaceuticals. Muscle tone. Indian summer. Indoor plumbing. Unconditional love. Friends. Good friends. Friends who sit with you during chemo. Friends who send cards. Friends who send gifts. Friends who send couture. Shiraz.
Dogs. Cats. Saturday morning pancakes. Cashmere. Down comforters. October. May. The blindness of true love. Coldplay. Homemade pizza. Having enough energy to cook really good food. Christmas. The way my kids smell. Yoga. Naps. Clothes hot from the dryer. Parking in the garage. A clean house. Date night. Toddler giggles. The Bristol Lounge. A capella boys’ choirs. The internet. Diet Coke. Jude Law.
Second chances. Third chances. Seventh chances. Tireless medical researchers. A sense of humor. A great-shaped skull. Discount retailers. Shoe shopping. Walking in the woods. Every day. Netflix. Hot showers. Maho Bay. French fries. Really good wigs. Sunbathing. A good book. Or six. Freshly painted toenails. Comfortable high heels. Hugs.
Family. Family. Family. Family. Family. Gumption. Self-confidence. A good cry. Qualified therapists. A sympathetic ear. Backup. Permission to fail. Not wanting to.
I can’t believe it. Something worked! The results of last Friday’s CT scan are in, and while anecdotal (I won’t see the report until this Friday), I’m going to take the doctor’s “Your scans look better… good news all around” as a positive thing.
So let’s take stock: no symptoms (other than a mildly puffy left leg); declining fatigue; recovering cardiovascular fitness; renewed interest in culinary pursuits; hair growing in. One might be tempted to forget one has a medical problem.
Which seems to be a habit for me. Even when I’m down in the dumps, if I can just get the dog walked and the kids fed, maybe some grocery shopping done, I really have to remind myself (or step out of the shower and look in the mirror - yowza!) that I’m sick. So now that I’m starting to feel like a fully formed human being, that reminder every three weeks (and you can’t possibly visit The Cancer Factory without knowing you have a problem) might get increasingly annoying.
Rest assured, though, that I’m going. And adding Avastin to the top of my “Thanks” list! Let’s hope the fix keeps working; I could get used to this.