Mid-Disease Crisis
It’s so weird how my life has become dictated by cancer. Even in this relatively healthy place, where I’m going to the gym and buying my own groceries and riding herd over my own kids, there is no aspect of my life that hasn’t changed since my diagnosis. Side effects, neuropathy, crunchy skin, fatigue, etc. etc. And lately, I’ve been feeling a bit put-upon because of it.
Have I reached the end of my sunshine-y outlook? Am I really sick and tired of being sick and tired, or am I just not able to maintain my optimism anymore? I’m probably going to start a cutting-edge targeted genetic therapy trial by early May (I find out on Thursday) – why isn’t my oncologist’s enthusiasm for emerging treatments rubbing off on me?
Not only that, but I find myself extra-nervous about changing protocols. I know, that’s not unreasonable. But not just because of the potential side effects and change in my lifestyle; what if they work? No, seriously. I’ve been grooving along in this mindset of fighting-cancer-fighting-cancer for so long but ultimately assuming that I’ll be checking out before my retirement planning becomes an issue.
I certainly have plenty of reasons to stick around – two of which are currently listening to Captain Underpants and destroying their bedroom at the end of the hall. But the whole concept of winning this battle and returning to life as a human being, not a cancer patient, seems a little unnerving to me. I’m getting quite good at the fight – what will I do with myself if I’m not doing that anymore? Is that it? Survivor guilt? Mid-life crisis? Mid-disease crisis?
Is this like being an empty-nester – when the kids move out, who are you anymore? There are certainly plenty of things I’d rather be doing with my time than running down to D-F every couple of weeks for another dose of x-rays and IV toxins. I’m sure I can figure out a career option or two that could keep me occupied. Is this like the uncertainty that all cancer patients go through during remission – feeling adrift and depressed without that regular touch-base appointment with the supportive medical team, sitting around waiting for the next three-month appointment and blood test and hoping they don’t show a recurrence this time? Seems like I’m sorta putting the cart before the horse.
Whatever it is, I’m grouchy for sure. Sounds like I could use a vacation.
Hey, yeah: some time in my happy place. That’ll certainly help.
wow, looka that hair.
Kids Say The Darndest Things, Vol. III
Last night at the dinner table, over our deLICious bowls of curried lentil soup, we were having a (typically high-brow) discussion of the effects of legumes on the, er, digestive tract. Somehow we got onto the fact that my system is significantly altered from its original state, and the A-man noted, “Mommy can’t have any more babies.”
“That’s right,” replied Mr. Wonderful. “No more kids for our family.”
Without missing a beat, A returned, “Yeah, she’s been neutered.”
[Kids Say... Vol. I; Kids Say... Vol. II]
Throwing It All Away
Call me crazy, but having come this far, I’m not really eager to just bite it in some offhand way. Thus it makes me really hot under the collar to see other citizens making stupid decisions, especially if those decisions include me.
Yesterday on the way home from (surprise!) Trader Joe’s, Avery and I were merrily chatting and generally enjoying each other’s company on the local Major Shopping Route. Our usual way home, down an off-ramp and through a traffic light towards our side of town, looked crowded (I’m a little touchy about sitting at a light if I don’t have to), so I chose the alternate route under the intersection and on to the next side street. As I continued down the right lane of the four-lane, divided highway past the beginning of the exit ramp, at a reasonable speed, a young lady in a small sedan PASSED me on the left, then BRAKED, merged in FRONT of me and off the right onto the exit ramp, BRAKING to get behind the car (exiting) that had been less than a half-car-length in front of me. By standing my car on its front bumper, I was able to skillfully avoid pasting her with my Viniman.
It probably goes without saying that I used my horn. Continuously. Until I looked over at her incredulous expression (“WhAAAAAt?”) and the TEXTING DEVICE clutched in her left hand as she drove up the ramp.
I’m probably not the most understanding person in this situation, being one who uses my cell phone for making calls, and then only eight or ten times a week at most. I don’t text and don’t really understand the reason for texting (which may explain why it’s so hard to get babysitters to get back to me), and I CERTAINLY don’t understand why it’s so important to finish a text while operating a one-ton lethal weapon at highway speeds.
I can’t decide if this is the cancer talking (maybe), or if I’m just getting old (probably). But it annoys me a lot (more than it should, no doubt) to be fighting tooth and nail to survive another six months, a year, a decade, and see people with their whole lives ahead of them making stupid decisions that could end it all in a blink. Texting while driving. Smoking. Buying shopping carts full of lousy food. I want to approach the young man cowering in front of the rain-soaked office building cupping his Camel and whisper, “Psssst…Cancer sucks,” in his ear. I want them to understand that it’s not always going to be this easy to assume you’ll live forever.
And while we’re on pipe dreams, I’d really like an iPhone.
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?
Get Up Offa That Thing: Exercise Helps Cancer Patients
Don’t hate me because I’m in good shape.
When I was younger, I was a sloth. My mom signed me up for gymnastics classes, diving classes, riding lessons, the local swim team. I didn’t last long in any of them. The problem was, they all involved exercise and effort. I was much more of a sit-down-and-read-a-book kind of girl. Because sports were mandatory at my school, I volunteered to be the goalie for both field hockey and lacrosse, if the coach would let me get out of running laps with the rest of the team. (Hey, if I could stand in one place for the whole game, why did I have to get in shape?) I was even voted “Class Couch Potato” in my senior yearbook.
Then, when I was 21, I met this guy. He never sat still. Rollerblading, cycling, running, hiking, sightseeing… if I wanted to spend time with him, I had to get up. But still it took an engagement ring before I really got serious about working out. (Holy crap, a wedding gown? I better get my rear in gear.)
Fast-forward to the birth of my first son. All of a sudden, working out became a treat (sort of), a ninety-minute period of alone time when I was responsible for no one but myself. And, as any mother, stay-at-home or otherwise, can tell you, we don’t even get that in the loo. If I had to exercise for some peace by myself, I’d do it. (Never mind that it had to be at 5:30 a.m.; that just gave me the excuse to nap when the baby napped.) It turns out I am vainer than I am lazy.
Fast-forward again to my life P.C. (post-cancer). When I recovered from my first surgery, I realized that without all those tumors inside me, I felt better than I had in at least a year. Possibly since before I had had kids. So I kept working out. And during the IP chemo, which I was told came with “crushing fatigue” (boy, did it ever), I kept working out. Some days just a lurch down to the bottom of the hill and back, but I got moving. It helped me to feel in control of my body, in control of my life, in a disease process that is totally out of the patient’s hands in so many ways. It gave me time to think things through while I staggered, and make some personal decisions without interruption. I’m convinced that having a pretty high percentage of muscle mass helped me come through the six rounds of IP cisplatin as strongly as I did.
Once chemo is over, every time, and I start crawling out of the pit, exercise helps me feel like a normal person (at least until I catch sight of my squishy, pale, bald self in the weight room mirror). It helps me get my energy back sooner than I would have just waiting inside my house. It helps me get rid of the carbo-belt that develops around the waistband of chemo patients, thanks to the fabulous anti-emetics available nowadays and the raging cells looking for sugar.
Today, I found a study that shows how cancer patients that get regular exercise have more vigor and less emotional distress than cancer patients who don’t. (Sign up for a free MedScape account to read it – they have great articles.) Which I probably could have told you without the grants and the patients and all that time, but now we have proof.
So my advice for cancer patients: GET UP. Lurch down the hallway and back again. Once you can do that five times, add some stairs. Go for a swim. Walk the dog. Go down to the end of the driveway and get the mail. Once you finish chemo, treat yourself to a gym membership or a daily walk with a friend, and keep moving. The oxygen will help your body recover; the muscles will burn off the spare tire, and the companionship will keep you coming back.
Look, I love an afternoon in a comfy armchair with the cat and a good book as much (and probably more) than the next girl. But it isn’t going to prolong my life the way being in shape will.
Besides, the chair and the cat will still be there in an hour.
‘Cause You Gotta Have Faith(?)
A friend posted an article today about how most Americans think God gets involved in what happens in their daily lives. One in three of the surveyed respondents agreed with the statement that “‘There is no point in planning a lot because ultimately my fate is in God’s hands.’” Once I’d recovered from my initial shock at the statistics, I read some of the comments at the bottom. Which proved to me that: a) NYT.com readers are either cynics, or liberals, or both; and b) the pollsters whose data is represented in this article were not asking questions in Manhattan.
I also started down the long path I’ve been on a few other times since 2006, about where my religious flag should be planted. Raised in the Protestant tradition but with an overarching sense of scientific skepticism, I did the whole Sunday School thing, and even confirmation and Youth Group through high school, but more to meet boys (yet another bonus of single-sex education) than for any church-y stuff, which made me more than a bit uncomfortable.
There’s probably nothing that’ll get you thinking about God quicker than a serious illness. Not so much when I was first diagnosed, but definitely when I found out about my first recurrence; I was making deals with God (or whoever) like Monty Hall on speed. Just one more month and I’ll never ask for anything else. Just one more year with my kids and I’ll never complain again. Just let me see them into middle school and I promise I’ll enjoy even the crappy weather. Just let me make fun of them at their rehearsal dinners and I promise I’ll go quietly. But I wasn’t really sure who I was petitioning.
And I can’t really tell you that I believe my bargaining worked. I get surgery from one of the best gyn/oncs in the Northeast, and I get medical and chemical treatment from one of the top cancer centers anywhere. Do I think God guided me to live in Boston? Um, no, that was a cute guy with a great smile. Do I think there’s some mystical, divine force behind my getting sick in the first place? Wow, I hope not. Lord knows (sorry) I don’t think that whole “You only get given what you can handle” thing holds any water, because there are people who get sick who can’t handle it. They’re also deceased. And I don’t think it’s fair to those of us who pull ourselves out of bed by our wigs every day and march onward, for our families, our kids, our sanity, to say it’s all in God’s hands. That’s selling us a little short.
This summer I had a long conversation with the Reverend who is the head of the church I got married in; I wanted to put a more adult spin on my views than my previous what-I-think-about-God chats, which were brief, giggly, and in the ’80s. Maybe I was looking for proof (I know, that’s not what happens – that’s why they call it “faith”), or an explanation of how this stuff can happen, or validation that it’s okay to be confused. The result of our hour-plus-long chat was…hmmm. He didn’t try to get me to make up my mind, which I appreciated. And he didn’t try to convince me that this was all part of some grand plan, which I appreciated even more. I’m certainly not any closer to understanding how some people can so blithely relinquish control of their fates and responsibility for their actions to a divine being that no one can ever prove exists.
So for now, I’ll continue to put my faith in the vanguard of western medicine, top-notch whole food, vigorous exercise, a healthy dose of laughter, and a good under-eye concealer. But if I make it to my kids’ rehearsal dinners, I hope I don’t have to go apologize to someone. Not a big fan of crow-burgers.
Hero Worship
I got to meet Kelly Corrigan today. You know, she wrote The Middle Place. (If you haven’t read it yet, do so. Quickly – I’ll wait. Well, maybe not.) She grew up in the same place I did, and we have a mutual friend, Lisa, who was plugging Kelly’s new book on FB yesterday and hooked me up with the reading today at a local library. The moment she walked into the room, I felt like I had met her before, or knew her from somewhere. (I’m sure I wasn’t alone.)
Kelly was diagnosed with breast cancer in 2004. She was 37, and her daughters were 2 and not-yet-4. (Sounds strangely familiar, right?) Anyway, I won’t spoil the story for those who haven’t read it, but I will tell you that when I read The Middle Place the first time, it certainly relieved me of the pressure of having to write my own cancer memoir. Sure, the tumors were in different parts of our bodies, we live on opposite coasts, and her tale takes a different course than mine, but aside from that she pretty much wrote down every thought that was running through my head that first summer of treatment. My knee-jerk impulse to careen home and curl up in my mom’s lap. My realization that the world was not nearly as forgiving a place as my life to that point had led me to believe. My constant search for the best words to use in mass emails to strike the balance between accuracy and upbeat optimism, so as not to get anyone down (and ensure plenty of replies). My awe at the way my husband stepped up to the plate to maintain some semblance of order over chaos. My fear of how every moment of my illness was affecting my kids.
Kelly read from The Middle Place and her new book, Lift, a small but laser-sharp review of her daughters’ little-girl years, which she wrote so they would remember more than Kelly had of her own early youth. She explores so many of the hidden joys and pains of parenthood, and made me want to write down more of my own boys’ moments, knowing my own terrible memory and feeling the need to share their trials and triumphs with them when they’re older.
Quick-witted and smart, the more Kelly spoke, the more I understood why her books and her essays are so well received. She said herself that she “walks a fine line” of not-having-really-bad-stuff-happen-to-her (no plane crashes, alcoholism, crushing poverty) but still speaking to everyone in common sentiments. Her humorous take keeps the mood light enough that you want to read more, but the love that is so evident in all of her stories, whether about her own daughters or just dear friends, carried all of us in the room right into her lap.
So of course I had to say hello, and our mutual friend had given me a name to drop. I told her how she had written the book that I was going to write, and she laughed graciously. I’m sure I gibbered on, unable to get across how truly aligned I had felt with her own reactions, making my career as a wordsmith seem a bit misguided. I only hope that I didn’t embarrass Lisa too much.
Maybe when I get to meet Jude Law some day I won’t sound like quite so much of a starstruck schoolgirl. Then again, he hasn’t read my mind. Yet.
Kids Say the Darndest Things, Vol. II
Well, husbands do, too.
Mr. Wonderful will be running a relay marathon in May, from Boston to Provincetown in two days or some such madness, up all night and riding in one of two vans with eleven soon-to-be-war-buddies while carbo-loading. Some of the group met for a pre-race strategy session/beer tasting at a local watering hole last week, which gave the friends-of-friends a chance to get to know one another.
My friend-whose-idea-the-team-was sent me a message after the meeting was over:
“Last night we were finding out how many at the table were divorced or divorcing (5 out of 7 – yikes!) and Mxxx asked [Mr. Wonderful] if he was divorced and he sweetly said, “No, I’m trying to hold onto my wife as long as possible.” =) Go give him a big fat hug and kiss!”
::sniff, sniff:: He’s the best. I’m a lucky gal.
(It’s okay to go barf if you need to.)
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.)
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.
