A Run for Sarah
On Monday, April 16, 2012, I will run in the Boston Marathon as part of the Dana Farber Marathon Challenge team.
While this will be my third Boston, it will be the first without Sarah cheering me on from the sidelines. I last ran in 2009, and I remember running through Wellesley close to the half-way point, seeing her there with our boys. I yelled out as loud as I could, “I love you, Sarah.” I remember the pride and love I felt as I saw them there together. And I remember my tears, knowing we had a battle ahead of us that was not going to be easy.
As I trained throughout this winter, I’ve thought long and hard about Sarah. I’ve thought of things we used to talk about, or things we did together. The way she used to encourage me. There were so many wonderful things she did for us. An integral part of our family that made us whole.
I’ve also thought of her strength and how she just kept going, on and on with all the surgeries, chemotherapy and trials to see if we could find something that would work. She never gave up. And this is a lesson that I take to heart. She’s with me every day. Every time I go running I find a deep strength knowing she is there.
I made a short film about running and training for Boston over the winter. But, it’s really not about me. It’s about Sarah and all she did for our family. It’s about that amazing strength she gave us.
When I run on Monday, I will be running for Sarah. I will be running for our boys. I will be running for all our friends and family. I will be running for our friends who have died from cancer over the past year. I will be running for our friends who are still fighting and surviving. And I will be running for a future without cancer. If you would like to support my run, please watch this short film. It’s only 3 minutes long. And if you can make a donation to the innovative research program at Dana Farber, please visit my donation page. 100% of funds raised go directly to cancer research programs.
Lastly, please share this with your friends. Let’s remember Sarah, the Carcinista, as we approach May 3rd.
With love,
Mr. Wonderful
Hosed
Quickly, before it falls off the current-events list: The Carcinista’s Oscars Red Carpet Review! Who hit, and who missed? Which actor had the worst tux? And, most importantly, how many collagen injections has Nicole Kidman gotten since the Golden Globes? Stay tuned, faithful readers, for the latest…hot…umm…news…
Hmm.
It appears I have missed a few days on the calendar. Where on earth have I been?
Riiiiight, sick. Started last Monday with my crack-of-dawn PleurX catheter insertion, followed by a surprise night admitted to the hospital. They wanted to drain me for 24 hours, then get an X-ray, so I spent the WORST night of recent memory not sleeping for more than 45 minutes at a stretch (roommate fell asleep with TV on; nurse turned it off; finally fell asleep, then shift-change vitals check; took 2 nurses to untangle my hoses so I could go pee, etc. etc.). I swear, those women get paid by the depth of the shade of the dark circles under your eyes the day you leave.
Tuesday I was raring to go home, and after some false starts (and one out-of-order X-ray machine), they sprung me, and Mr. W dragged my carcass home for a nap. Pain was under control with Dilaudid, left lung had been drained; I was tired, but SuperMom was in da house and taking care of business for me. I slept well, ate little, thought I was recuperating.
Went to see my oncologist (Dr. A) for a treatment revision on Thursday morning. Cancel the clinical trial, start chemo again. This time: Navelbine (“nav-” as in “navigate”, “-bine” as in “coffee bean.” It’s Fransh). All members of the team were “go” with the chemo; we’d start on Tuesday, no waiting. Great – I love a plan. Home to rest for the weekend.
I felt so decent (i.e., not in pain) on Saturday morning that I decided it was time to quit the dilaudid. I had started to get twitchy at the end of my four-hour dosing schedule, and I hate that. I thought Tylenol would get me through, with Tylenol PM for the evenings. Ooooh, was I wrong.
I lay awake twitching most of Saturday and Sunday nights, moving from the bed to the couch and back in search of a comfortable position. (I’m a side sleeper, and once my right side gets bored, I usually rotate. Only I had this big hose hanging out, and two incisions. Ow.) I tried propping my left side on pillows; lying flat on my back; lying on my stomach with pillows propping me up. Child’s pose. Happy baby pose. Nothing was comfortable. Not to mention that I felt like I wanted to crawl out of my skin.
Fortunately, when my home nurse arrived on Monday morning, she chided me that it was “way too soon” to stop taking pain meds. Thank heaven. Took a big, fat Vicodin and a three-hour nap. But you can’t take narcotics and drive, so…
…When I arrived at The Cancer Factory for my new chemo on Tuesday morning, I was pain-med free and eager to talk about it. My fantastic NP was so empathetic — the first thing she did was order me a quick-acting (and quick-ending) dose of morphine so I could relax. Then she set up an appointment for next week with the pain-management and palliative-care specialist doctor to work out a plan, which will probably include a Fentanyl patch for 72 hours of continuous relief.
Stop freaking out — “palliative” doesn’t necessarily mean that I’m on the way out; it’s a specialty that focuses on the quality of life of patients with chronic illnesses, and on easing their pain issues as manageably as possible. I can work with this doctor for YEARS.
So, short story long: lung tapped and putting out about 25cc (3 Tbsp.) every other day. Tube uncomfortable, but tolerable with Oxycodone and Tylenol. New chemo is okay (side effects: constipation [woo hoo] and fatigue [oh, yes]); I’ll get it once a week provided my blood counts stay healthy. Dragging the oxygen hose around my house is like a bad Keystone Kops sketch, what with the 50 feet getting wrapped around the dog, the kids, my legs, stuck in doorways and over dresser drawer knobs. And despite advice, I have yet to Beadazzle my Casino Canister (thanks, Pateeta!). Possibly I will wrap it with feather boas. To match each outfit.
And we watch and wait. Hope you’re more patient than I am.
This Is the Droid You’re Looking For
Oh, it’s been an interesting week. I know I’ve been quiet, but I really can’t bring myself to clog the ether with the neck-snapping back-and-forth that leads from one mile marker to the next. Now that the dust is settling, I’ll net it out for you.
Two lung taps; one three weeks ago, one yesterday. Not much fluid, but it made a difference in my breathing. (It sure didn’t improve my blood pressure — the first appointment, I waited over two hours; yesterday — three-and-a-half.) But as soon as I left the hospital last night I started coughing and couldn’t stop; when I called my medical team this morning, they prescribed Cipro against a possible infection, and home O2.
This is an image I’ve been avoiding since I first heard my lungs had metastases: the feeble little cancer patient, stooped and dragging her green canister around with her, unable to do anything. I knew it was out there, somewhen, but didn’t think we’d get there quite so soon.
But vanity must fall to the ability to breathe (and talk — I could barely talk!!!) And so, this afternoon, R2-D2 moved in.
37 liters of fun. And no, it's not a kegerator.
That little beige guy on the right is the portable unit, thank heaven. So I can shop without dropping. Or dragging my little-old-lady tank cart behind me.
I’m now breathing 2 liters per minute of pure oxygen. I suppose I should be grateful — don’t people pay big money for this service in nightclubs all over Scandinavia? I’ll let you know if my wrinkles disappear.
Also, on Monday I’ll be getting a pleurex catheter, a permanent installation between my left ribs with a little catheter that coils up and gets taped to my side. That way, I can drain my OWN lung when it needs it, instead of schlepping downtown and waiting all afternoon. Downside: no swimming. Ugh.
I also might be changing treatments, going back to one of the conventional chemos I haven’t tried yet: navelbiene (I know, it sounds ridiculous) or hexalen. I’m disappointed that my trial isn’t doing a better job; the first six weeks were so promising! I must have MENSA-smart tumor cells, so clever at adaptation that they can outsmart any new therapy within two months. I wish there were an application to take advantage of all this primal smartitude: discovering the key to nuclear fusion, balancing the federal budget, finding Jimmy Hoffa…
…curing cancer…
Hermit Crab
I seem to have dropped off the face of the earth, rants about pinknausea notwithstanding. I’ve been trying to figure out why I don’t feel like talking right now, and it seems to come down to chemo. (Doesn’t it always?)
Starting actual chemo again (vs. a clinical trial or biologic or something) threw me for a loop. Apparently I’ve blacked out how crummy I feel after infusions, because when I collapsed into bed at 5:30 on day 3 of the last cycle, I was surprised. Mr. Wonderful said, “Don’t you remember? This is usually the time you start feeling like crap,” but I had forgotten it. Like how you swear immediately after giving birth that you will never, ever, ever do that again, then twelve months later you’re all, “Let’s have another one!”
So I spent day 4 and 5 in bed, me and the cat and the Compazine, and by the end of the weekend I started to feel like myself again. But apparently aging your body forty years in four years has some drawbacks, and I no longer rebound like I did in 2006. I’ve been having trouble just getting out from under the coughing courtesy of Estes Park’s elevation, and still haven’t resumed my exercise schedule. My lungs don’t like it, not one little bit – not even climbing the stairs, and last night Mr. W and I had a giggle at me huffing and puffing after pulling off a tight long-sleeved t-shirt.
Now I’m at The Cancer Factory for Cycle 2, and anticipating another week of feeling lousy. But why that has to send me into hiding for the next two weeks as well, I can’t figure out. I’ve turned into a terrible phone friend, forgetting to return messages and schedule dates. Some days I just drift along until it’s time to get into bed again, and that’s about all I can handle. But other days I’m doing my little suburban-mommy thing, driving and shopping and cooking and all, yet I still can’t manage to get my head out of my domestic bubble.
So I guess this column is a sort of apology, to those I owe phone calls to, or to those with whom I made tentative plans and then never followed up. It’s not you, it’s me. It’s taken me two years of therapy to be able to accept these words and feel comfortable saying them: I’m doing the best I can.
Photo courtesy here.
Too Many Chiefs
I’m getting tired just thinking about explaining all of this, but I know you all wanna hear it.
Last week… no, wait, back up.
Two weeks ago, when I had my last CT scan (and waited FOUR HOURS for the results), Phase I oncologist (we’ll call him Dr. B) said that I should set up an appointment with my medical oncologist, the one who’s overseeing my case (we’ll call her Dr. A) as soon as possible, since she’d probably want me to stop taking the Magical Mystery Drug (the one that was no longer suppressing my lung metastases) and go back on chemo. So, like a good little girl, I ran home and made the appointment.
This Tuesday, when I met with Dr. A, the first words out of her mouth were, “So… what can I do for you?”
I was a little surprised that she wasn’t already aware of what Dr. B had thought, so I said, “Dr. B said that since the trial isn’t keeping down my lung mets, you’d probably want to pull me off it and put me on chemo.”
“Oh… from the email he sent me I thought he wanted you to keep going with the trial?”
::crickets::
“No, he told me you’d want me to do something more aggressive about my lungs.”
After a little back-and-forth, and telling her how crappy I’d been feeling for the previous ten days, she got on board with the chemo idea and came to the conclusion that since I hadn’t done carboplatin for a year, we could do that in combination with Alimta, and start on Tuesday (because I will NOT reschedule another First Descents trip!). Dr. A told me her scheduling coordinator would call me about appointment times for Tuesday, and shook my hand. I left her office pleased to be ending the nasty pills that have started giving me day-long nausea and still taste like dirty ashtrays, ready to switch tactics and get back to the business of kicking cancer’s ass.
Once I got home (of course), I realized I hadn’t asked whether to keep taking the Magical Mystery Drug for the rest of the week until starting chemo on the seventh. I called first thing (at the crack of 9:00) Wednesday, then airily skipped through my day waiting for a callback, without the pills, loving the taste of a glass of water and my freedom from being close to indoor plumbing.
Wednesday night at 8 I discovered a message on my answering machine from about 4:30 in the afternoon that said, “Please keep taking your study drug indefinitely.” Uh, what? I thought I was starting chemo.
Yesterday as I was waiting at school pickup for the boys, I got a phone call from the Phase I nurse practitioner, I’ll call him Angel, who asked how I was doing. I told him I felt lousy, and explained the mixed messages I was getting from the two different departments, and that no one seemed to know quite what the heck was going on with my plan. I told him, “There are too many chiefs here.”
He said, “Well, this little Indian is going to get to the bottom of things and I’ll call you as soon as I know.” Sweetie, you’re the best.
This morning, I left a message for Angel, just to check in and remind him he was working on something for me, since I could totally see the holiday weekend creeping up and not hearing from anyone until I just showed up on Tuesday at the crack of dawn. By the time I got home from the dog park, I had a message from the Phase I trial coordinator with my schedule for Tuesday’s appointments, which sounded a whole lot like my regular trial schedule. Grrrr… I waited for a call back from Angel.
At 12:45 he called and told me that we’ll check my CA-125 on Tuesday morning, and if it’s dramatically higher again (from 74 to 90-something at the last check) they’ll pull me off the trial and start chemo that morning. But if the CA-125 is stable, I’ll stay on the study drug. At least I knew what was going on, and that everyone was now on the same page.
Does anyone else think that with all the money being generated by and donated to The Cancer Factory on an annual basis, they might be able to spare the time for slightly more thorough inter-departmental communication? As opposed to, say, f*cking around with my life and my schedule like government employees?
God, I hate waiting. Have I mentioned that before?
Fresh Horses
Sorry I’ve been so quiet lately. The Magical Mystery Drug has been doing a number on my stomach, and between napping to kill the heartburn and napping to kill the grouchies, I’ve been a little hard to engage in conversation.
Last week’s Monday visit was a bit of a surprise. Although in hindsight, I sorta knew there was some news coming down the pike, seeing as how I waited FOUR AND A HALF HOURS for the results of my CT scan. The news is: lung mets don’t like the Magical Mystery Drug anymore, and they don’t want to play. They’re going to keep on growing the way they want to, and pfphthbpbhpt to anyone who says different. Pelvic tumors are following orders, shrinking and softening and being little Trial’s Pets, but noooooooo, not my lungs.
Thus I’ve spent the past six days waiting for an appointment with my other oncologist, who the Phase I doc said would probably want to take me off the trial and start chemo again (but I should keep taking the nine delicious pills a day just in case she didn’t want me to stop, because once I stop I can’t start again, etc. etc.). Today I met with her, and once we’d worked out that no, Phase I doc didn’t want me to continue the trial even once I’d met with her; he said SHE’d probably want me to stop it and go on chemo (you’d think the inter-office communications over there at that world-class Cancer Factory would be a little clearer), there’s a new plan in place.
Starting next Tuesday, I’ll be hopping back on the chemo train: carboplatin and Alimta. Supposedly not too debilitating, and I’ll get to keep my hair. (Good news/bad news: while I like having hair, mine is really pissing me off, and I miss my perfect, ten-second-toilette wig.) And the schedule will allow for me to still make my First Descents climbing trip on the 19th.
I was pretty discouraged, feeling like, “how many more damn things do I have to throw at this disease?”, but now I realize I have lots of options still open to me. Once chemo has stabilized my lung disease, we can start looking once again at the over 300 clinical trials that are available to platinum-resistant ovarian patients. So many choices… think I can find one in Miami for the winter?
Photo here.
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.
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.
Two Steps Forward, Three Steps Back
Have you ever had that dream where you’re running, something’s chasing you and you’re running as fast as you can, but no matter how fast you move your legs you don’t go anywhere? Yeah.
Got the results of the CT yesterday. (You see where this is going, don’t you.) The Avastin is successfully holding down the pelvic tumors – they’re even smaller than they were in November. The lungs, however, don’t seem to be getting the message. Old (tiny, glacially progressing) nodules have grown a millimeter or two; new subcentimeter nodules are appearing. No lymph node increases, nothing in the abdomen or bones. But those lung guys, off by themselves, clearly on their own program, making trouble.
I’m working on my optimism, but today it feels like my balloon is a little deflated. I know all the things I’m doing to take care of myself, exercise, diet, good attitude, and all the things my medical team are doing to take care of me, scans, great medicines, oodles of treatment options, are the best in the business. Seems the glacier’s gonna carve that canyon anyway.
The Avastin will continue; I’m meeting March 1 with the head of the clinical trial department to see if there are any open studies looking for a guinea pig who’s totally healthy except for the damn cancer. Let’s hope the nasty make-your-hair-fall-out-again studies are all full.
One thing’s for sure, I’m going shopping with my usual post-tax-return IRA deposit this year.
How To Help A Cancer Patient, Part I
When you first hear the words, “You have cancer,” instantly a million things pop into your head. If you’re like me, after the initial “Holy sh!t I’m going to die” comes, “Who’s going to run carpool this week?” or “Oh, no, my house is a disaster area and people will be coming over.”
Once other people hear you have cancer, they unfailingly end every conversation by saying, “Let me know what I can do to help.” But at the time, you can never think of anything, and then when you think, “Wow, I wish I had someone to walk the dog tomorrow…” you can’t remember who it was who offered to help (chemo brain). How can something so generous turn out to be such a royal pain?
Within about forty-eight hours of my surgery, my crack research team (read: family members with internet connections desperate to DO something) had located the best Gyn/Onc in the area for my case, researched the then-hot-and-trendy-new IP chemo protocol, sent Edible Arrangements, and hooked me up with a lifesaving website that would feature prominently in my treatment and recovery plans for the next three years (and may come around again).
Lotsahelpinghands.com is a website that allows an administrator (you? your BFF?) to set up a free homepage for the cancer patient and their family, friends, and supporters, who log onto the site and sign up with a password once they are invited to join. The administrator sets up “tasks” – events as simple as picking up drycleaning or running to the grocery store, or as complicated as making a meal with specific dietary requirements (not too spicy, the kids don’t eat tomatoes, etc.) and bringing it over to your house. The sky’s the limit; my administrator set up “daily laugh” tasks so people would send me email jokes, and people from my then-kindergartner’s class signed up to host playdates for him and his little brother. I had people weeding my garden, raking leaves and planting mums in the fall, and delivering more delicious dinners than any one family could eat in a month of Sundays, except Mr. Wonderful was involved so we ate it all.
The BEST thing about lotsahelpinghands (aside from it being free) is that it gives the overwhelmed family a way to pass off some of the crazy-lot of organizing that comes with the new regime. And the seemingly unceasing refrain of “How can I help?” has an easy outlet: sign up for the website and start taking on tasks.
The OTHER best thing about lotsahelpinghands is that it taught me to let go a little and lean on others. My family is so self-reliant (and Mr. Wonderful and I slight control freaks) that allowing other people to take over and fold my laundry was nearly painful at the beginning. But as my kids and I got more used to giving up some control so we had more time to be together as a family (especially important when it seemed there might only be a couple more years) I realized that it was one of cancer’s silver linings. My boys learned the value of doing for others, and we now are honored to pay it forward whenever we get the chance. The sense of community may have been more instrumental in my survival than the chemo.
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 