Give Me a Break
The trial continues. Week Two of taking the fabulous drug daily, all nine capsules of it, and I’m beat. Possibly from the effort required to swallow nine capsules at once. I’ve never had a problem taking pills in the past, but this really frosts the cupcake. Why, in our era of superb medical advancement and death-defying technology, is this pharma company incapable of cramming 450 mg of my mystery drug into five capsules? Or three?
Aside from increasing my snark quotient, said mystery substance is wearing me out. Maybe it’s all the peristalsis, or maybe I’m just getting old. Or possibly since I’ve been actively fighting this beast for over eighteen months now without a break, I’m losing my elite-athlete-like (ha) endurance. I’m a lover, not a fighter. And I don’t think four weeks off to wash the Avastin out of my system counts as a break. Every time I stop to examine my alternatives, though, I realize: they suck. So back at it I go. But I’m really sick of:
- Flirting with nurses to make sure I’m the favorite
- Peeing in a cup
- Repeating my last name and date of birth to prove I’m really me (who the hell would pose as a cancer patient?)
- Sleeping with my support stocking on
- Having the inside of my mouth taste like an ashtray and not getting to smoke first
- Being too tired to play tennis, swim, ride a bike, walk up the stairs, cook dinner, host a playdate
- Short hair
On the bright side, I am not bald, throwing up, peeling, recovering from an abdominal incision, or dead. I can still drive, give directions, boss my kids around, surf the internet, and laugh at a dirty joke.
I think I need an attitude adjustment. Possibly an expensive spa treatment. Fortunately, I have one scheduled for Thursday morning. Hope I can drag my sad old carcass in there.
Thanks for listening. We now return you to your previously scheduled Eastern Seaboard Inferno of a day.
At least I can still nap.
The Silent Treatment
It’s so unusual that I haven’t posted anything this week. It’s not as if cancer has been far from my mind – quite the opposite, as I’m sure you can understand. It’s been hard to think about anything else. And yet, I haven’t felt like there’s been a post worth sharing kicking around in my brain.
Whenever I share bad news, I sort of hole up for a while. It’s not that I don’t want to talk to anyone, but I feel so BAD having to draw everyone’s attention back to me and my ridiculously persistent illness. I’d rather talk to you about Sex and the City 2, long weekend plans, chicken recipes, oh, ANYTHING else besides my effin’ lungs. I’m not sticking my head in the sand. I certainly don’t mind talking about it, but I hate knowing that my illness is causing distress. Which it is, don’t lie to me.
I know I’m not the center of the universe. But I can hear it in people’s voices, see it in their faces when they bump into me — they’re bummed I’m sick. I hate that. Not that you’re not allowed to feel your emotions around me, but I have a “no crying” rule for a reason. And I’m not past the angry-pissed-off-frustrated part of the bad-news-reception emotional cascade, so I’m not ready to cheerlead for myself yet. I’ll get back to you.
Have a great long weekend – maybe some time in the pool will cheer me up. Gotta get my Vitamin D, ya know.
Photo courtesy Edward Feather.
Insult, Meet Injury
I think I’ve been pretty reasonable during this hideous process. I’ve accommodated last-minute schedule changes, long-term expectation rearrangements, physical limitations, radical downgrades in physical appearance. I’ve taken it all on, maybe not smiling but resigned, and kept on going, because, really, what choice do I have?
Consider the camel’s back broken. Wednesday’s CT bad news led to this afternoon’s phone call from the clinical trial coordinator for my PI3K trial, and after a little dithering back and forth, she said that my onc wants me to start on the 21st of June. And the joys of clinical trials include really frequent office visits, which will start on the 21st and continue for the 22nd, 23rd, 24th, and 28th of June.
Astute readers (Cheesesteak) will note that that coincides with my not-widely-broadcast trip to Washington for a First Descents kayaking trip. I was really, really, really excited for this adventure; it’s totally unlike me to take on a physical challenge of this nature, and I was beyond excited to meet and make friends with the other under-40 cancer survivors on the trip. Alumni tend to refer to their “FD Families”, and I want one.
But I have to cancel. (I keep writing “cancer” – damn you, Freud.)
A quick email check-in showed that they have no other kayaking spots available for this year, although they could put me on the wait-list. I might be able to get a spot on a climbing trip in September.
Right now I’m so hopped up I can’t even conceive of this change. I booked plane tickets; bought an inordinate amount of the suggested “non-cotton” clothing. Was making peace with the fact that I’ll probably end up upside-down under my kayak and hoping I’ll have the wherewithal not to drown. I WAS EXCITED.
This is really over the top. I’ve been good; I’ve taken my lumps and (mostly) not complained. I’ve missed events, given up hope of starting a meaningful career; foregone chaperoning field trips. Gotten used to looking at the middle-aged lady who lives in my bathroom mirror, and the fact that she can’t wear high heels for more than thirty minutes. Accepted that my left leg is a whole pants size larger than my right. I’ve abandoned plans for a 5k, or the thought of becoming a decent tennis player. But I wanted cancer to give me something for all the stuff it’s taken away, and I thought that five days of kayaking and bonding with other like-minded cancer ass-kickers was an appropriate and reasonable expectation.
Apparently not.
Photo courtesy http://www.firstdescents.org
Cancerversary
A lot can happen in four years. A college education. Marriage and a baby. A vast improvement in a hack tennis-player’s backhand (I hope).
A complete rearrangement of priorities, expectations, and attitudes. Oh, and internal organs.
Four years ago today I had my first surgery. Apparently, everyone but me knew it was going to be cancer. Not sure whether I was naïve or doing ostrich impressions, but there it is. The world changed.
I’d love to give you a neat list of all the things that I’ve learned since 2006. How to look for the silver lining; how to treasure each moment, to live in the present. But most days, I don’t manage to do those things, just like any other person. It’s only in hindsight that I (or anyone else) realize how fun/special/poignant each moment is, good or bad, painful or blissful, alone or together.
I have, however, discovered that inside my laissez faire, go-with-the-flow semi-slacker self lies a bit of a lioness, fiercely protecting my family from harm and loss and managing to eke out a few more years for myself in the process. Revelatory? Possibly. Hard? Definitely. I cry every week, but that’s still outweighed by the laughter. Which is actually a pretty good measure of any life, sick or well.
Here’s to four more. Thanks for listening.
Cynics Don’t Do Laughter Yoga
Went to a great conference at The Cancer Factory on Saturday, for survivors and patients under 40. The vibe was good, the kids were hip, and the morning session I went to, on Mindfulness, was fabulous. Bagged lunch eaten and new friends made, we shuffled back into the main meeting room for the first session of the afternoon. Laughter Yoga. Now, I’m all about laughter, as you can probably guess from various posts herein, but I’m afraid I’m better at laughing at people than laughing with them.
Our enthusiastic moderator started us off with a quick description of the restorative and oxygenating power of laughter, and the history of Laughter Yoga, which started at a clinic in India and has now spread to Laughter Clubs all over the world. (Look for one in a neighborhood near you!) Apparently, even fake laughter can raise your mood and improve your breathing and outlook on the day. And lord knows I tried. But she had us getting up and walking around the big open chair-circle (never my first choice) and running up to each other, pretending to shake hands with an electric clown-buzzer while making eye contact, and laughing uproariously. Sort of fake-it-’til-you-make-it laughter.
I’ll admit it was sort of goofy at first, and the bizarreness of it all got me to laugh a few times. She let it go for three or four minutes, then we returned to our chairs for a breathing exercise and wind-down. Aaaaaaaand then she explained the next mock-hilarious encounter for us to enact in random pairs. And on it went. The second exercise I definitely wasn’t trying as hard. By the third, I was out. Sat in my chair and felt the eighth-grade-wow-this-is-so-lame vibe creeping up over the back of my neck.
I was a leeeetle bit jealous of the folks (a smaller and smaller selection of the whole for each subsequent farce) who were still participating, as their personal insecurities/strange-o-meters were low enough that they could whoop it up. But the longer I sat there watching, the less I felt like laughing, and the more I felt like leaving. I was comforted by the sight that I was not alone in my unease.
Am I immature? Or was it just naptime and I had run out of cancer-fighting pep for the day? Probably both. All I can tell you is that I could practically feel my blood pressure inching upward, until the leader finally congratulated us all on our spectacular job and we closed our eyes for a few more deep breaths.
It certainly wouldn’t be a club I’d run out to join to help me relieve stress. Color me snide.
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.
‘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.
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.)
Oh, Great: Ovarian Cancer Symptoms Poor Disease Predictors
Mr. Wonderful forwarded an article to me today – he’s good like that. Anyway, there was a study published in the Journal of the National Cancer Institute that says that symptoms are of little help in predicting whether a woman has ovarian cancer. That is, out of 100 women with classic ovarian cancer symptoms (bloating, abdominal or pelvic pain, bowel changes or frequent urination), only one woman may actually end up presenting with the disease.
“The low positive predictive value of symptoms to detect ovarian cancer—particularly at an early stage—argues for a cautious approach to the use of symptom patterns to trigger extensive medical evaluation for ovarian cancer,” the authors write.
I read this news as very similar to that brouhaha about mammograms from last year: why bother testing, since it’s not going to come out positive? Not cost-effective, ladies; please hit the bricks. Yes, the editorial accompanying the study results highlights how great it is to discover that in fact all the women who have ovarian cancer do present with symptoms; and yes, they do say that this study’s results highlights the need for more effective markers and predictive testing for ovarian cancer.
But with the state of health-care today (quick shout-out to Scott Brown: hey!), don’t you just envision the suits over at Major Health “Care” Conglomerate, Inc. licking their lips and checking off another reason to deny a CA-125 or ultrasound or laparoscopy? More importantly, it’s hard enough for many women to get a doctor to believe that there’s something really wrong when they complain of any of these classic symptoms – I’ve read too many horror stories about doctors diagnosing stress, esophageal reflux, constipation, and prescribing some Ambien and Prilosec and sending the woman on her way with a pat on the head, like Cindy-Lou Who. If this gets out, how much harder will it be to impress upon someone the seriousness of the situation?
And finally, perhaps the most frustrating part of this study is that, even with such “classic” symptoms for ovarian cancer, experienced by nearly EVERY woman who has the disease, early- or late-stage, THEY’RE SO POORLY PUBLICIZED. I’m a pretty well educated woman, I know how to take really good care of my body; why did I have no idea about the symptoms of ovarian cancer? There should be a poster up in every OB/GYN’s office waiting area and another one in the exam room, so while you’re waiting an hour and a half for your appointment you can read and re-read and memorize the symptoms and maybe have a chance at identifying them while you’re still save-able.
That’d be way more useful than an eighteen-months old copy of Good Housekeeping.
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 