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 My vision of flowing locks has been replaced by persistent brown Nancy-Reagan-head and the cruel fact that no one checks me out any more, because I look like their mom.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
Cancer giveth, and cancer taketh away. The giving part is another post for another day. Today, we gripe.
Actually, it’s sort of a meta-gripe. I had a lousy day earlier this week, I won’t bore you with the details, but the thing that really cheesed me the most was this overarching feeling I had that I ought to just stop grousing and be thankful that I had a life to live. And that made me madder.
Not only has cancer taken away the innocence of my assumption that I’ll live to be a hundred like my grandmother, that I’ll be around to annoy and embarrass my teenage sons, that I’ll get a chance to spend some of the (admittedly smaller than previously) IRA my tax refund funnels into every spring, among other countless losses. Now I can’t even have a lousy day, sink into a funk, eat too much chocolate and ignore my vacuuming without feeling guilty? I have to be so THANKful that I’ve surVIVEd long enough to be having this day at all? That just sucks.
Wow, someone needs a nap.
For three-and-a-half years, I said “no”. No volunteering, no Class Mother position, no field-trip chaperoning, no personal projects, minimal cooking, no homemade Christmas presents. I’ve focused on the four people and two pets in the little brown house, and on holding myself together enough for my kids to keep speaking to me and my husband to be able to hold most of the weight of running the household.
Fast-forward to December, 2009. Finally feeling like a human being again, like my brain is firing on all cylinders. Able to keep track of the location of my sunglasses while simultaneously talking on the phone and switching the wet laundry to the dryer, I am getting a little full of myself. So I start saying “yes” – yes, I’d love to edit the school newsletter. Yes, I’d love to bring in a dish to contribute to the second grade’s Country of Origin feast three days before Christmas. Yes, I’d be happy to give the neighbor a ride home from the hospital on a Wednesday night after a support-group meeting and a whirlwind trip to a very crowded Target. Yes, I’d love to make six pounds of spiced walnuts to give as gifts to the teachers and service personnel in our lives. Why sure, I’d love to go to a fundraising dinner on December 17. In formalwear. The evening after a chemo treatment.
And thus a few of the juggled balls have hit the deck. Had to pass off the newsletter to the previous editor because my software skills were exceeded by the amount of work that needed doing. Failed to check with my seven-year-old on the due date of his research project and had to pull him out of bed at 7:50 on a school night to help him finish it. Got all the stuff I needed at Target and the neighbor home from the hospital but then blew parking my land barge in my teeny garage and dented the fender on the support column. Remembered to buy a present for the birthday party but forgot to make a playdate for the other kid for the same afternoon. Made it to the fancy party but blew off my boys all afternoon because I had so much to do before the sitter came that I couldn’t take ten minutes to read a book. Haven’t had time to call my dad back from a call he made to me three weeks ago.
Now I’m realizing that perhaps I’ve bitten off a little more than I can chew. Remembering that even before I got sick, I was maybe not the best multi-tasker on the planet (raging hyperbole). Remembering that this mom thing leaves little room for personal activities and ambitions, and that getting to the gym four times a week might be the pinnacle of my independent activity. Realizing that in my rush to fulfill what I though of as my neglected community obligations I had to put my homefront responsibilities on the back burner.
So I’m making no one happy right now. Family resents the fact that I’m busy. Kids are calling me a grouch. Dog hasn’t been on a real walk in four days. Laundry piling up, dust bunnies multiplying. Christmas spirit cowering in the back of a closet. Wherever I’m focusing, I’m feeling guilty that I’m not working on something else. And I’m afraid that this isn’t going to change as I get healthier; this is the standard modern mom’s dilemma. Crap.
The first thing to do is spend the day with my family NOT stressing about the projects that haven’t gotten done yet. The second thing to do is trim the fat from my obligations list. Or maybe I’ll leave that for the New Year – I really need to finish the Christmas cards. Okay, start the Christmas cards. And call my dad.
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 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.
Aside from the insulative value that having your own hair adds to a winter’s day, it’s an amazing mental hurdle to feeling normal. Last spring, when I was going through chemo, the stuff I was on didn’t make all of my hair fall out; in fact, I only lost about half of my volume (which I can assure you is enough hair for any three other people). To the average observer, all systems were nominal.
This summer, when my hair started falling out in earnest (thanks, Taxol!), I was expecting it. I was even, in a small part of me, looking forward to it – quick showers, no salon appointments, no shaving, cooler summer days. And yet as blase as I can be about some of the stuff that happens with this battle, there’s something so unnerving about being bald. Oh, I know I have a cute head, that my wig is fabulous and I don’t even mind going around in a bandanna. But all of a sudden, the world looks at you differently. You’re a cancer patient, and everyone can tell.
Why does that bother me? I should be proud to represent, a survivor who’s still plugging along through the soccer mom’s routine: walking the dog, going to Target, meeting the school bus. Does it make me uncomfortable to get special dispensation — no, please, go ahead of me in line, I insist — or to accept help to the car with my groceries? Lord knows, there are days I can use it. Is that why I want my wig to look so natural? (Or am I just really vain?)
Do I worry about making other people uncomfortable? I’m more than happy to talk about my illness, diagnosis, symptoms, not only because I hope I can help someone else who may also be sick but because, really, who doesn’t like talking about themselves. Once people know you’re sick, though, they make sure to always ask you how you are, if there’s anything they can do for you, and I think I’m very conscious of that switch — I’m not just your average girl any more. I want people to want to know how I am not because they know I’m sick and are being solicitous of the poor cancer lady, but because that’s what you ask your friends. (And yes, I know that’s ridiculous; I know who my friends are and that they love me. This is not an entirely rational process, kids.)
It’s been so hard to teach myself to accept help from those who offer it, not just because I need the help but because it gives those who offer it a way to have some control over an uncontrollable situation. Offering help is a way to make it better, even if it’s only a casserole. So maybe passing for “normal” is another way I need to let go, be the best baldy I can be. Or maybe I’ll keep fighting to look ”normal” because looking good, for me, has so much to do with feeling good.
Anyway, thanks for the casseroles.