Caller ID
“Private Caller” is seldom a good sign. It’s usually some telemarketer totally flouting the FCC regulations that specify that our number is on the do-not-call list and making my marketer husband hot under the collar.
Or it’s The Cancer Factory. Which is was this morning. And not only just the hospital, but my actual oncologist. The day after a scan.
::cue ominous music: dum Dum DUMMMMM…::
Right. Pelvis and abdomen stable, she began. (Always lead with the good news.) Lung tumors progressing. (Ah, there it is.) Slowly, but progressing. Which, frankly, I’ve known for about three weeks. Ever since the allergy season started, I could tell.
Cancel the cytoxan. Bring on the PI3-Kinase inhibitor trial. They’re holding a spot open for me (let’s say it again: thank heaven I’m in Boston!), so as soon as my cytoxan wash-out (4 weeks) is over, I’m in like Flynn. Unless my tumor tests positive for the B-RAF genetic marker, in which case I would be eligible for that trial. And we all know how I love making important decisions. (Or maybe you don’t: when I used to have to choose between A and B, my mother would write each option on a piece of paper and mix them up behind her back, then I’d choose a hand. And invariably want the other option more. Pathetic.)
So we wait. Again. Lovely.
Maybe without the cytoxan I’ll have a little more energy for OMG! this weekend.
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.
Panic On The Streets of *mingham
WARNING: There will be a mild amount of “sharing” in this post. Read at your own risk.
I woke up to the alarm this morning, awake and ready to go to the gym. Ungodly early, but apparently I got enough sleep last night because I didn’t feel tied to the bed. As I was having a quick pee, I sneezed. And my intestines, right in the region of my ileostomy and reversal, started making a funny noise. It sounded a lot like it did when I had the ostomy: sort of a squirty, bubbling sound that I hadn’t heard since then. The noise repeated, again and again, for about thirty seconds straight.
I panicked. I knew this was the bowel perforation I had so skillfully (through no action of my own) avoided since starting the Avastin. That with my sneeze, some aneurysm of my small intestine had finally popped, and I was doomed. Maybe the recent onset of fatigue has made me jumpy. So I did what any normal, freaked-out, cancer patient would do: I called my doctor.
Fortunately, she was awake, and called me right back. She talked me off the ledge, and reminded me that, no matter how recently the perforation had occurred, if I were actually experiencing one I would also be in excruciating pain. Which I was not.
So, faith shaken but restored, I put on my sneakers and headed to the gym. With my phone in my pocket. I’m not really sure how Mr. W managed to get back to sleep, but he did.
Now that my panic has faded, and I’m trying to squelch my embarrassment at escalating a series of gas bubbles to a medical emergency, I have a little time to think about why I got so worked up. It’s not like me to jump to the worst possible scenario when something weird happens; I usually find logical excuses for what’s going on and wait for more evidence before calling in the troops. (Possibly why we find ourselves in this mess to begin with.)
Which means that I’m less emotionally stable than I initially appear. Clearly, four years of this process have rocked my sense of stability enough that I’m more Chicken Little than hakuna matata these days. Sometimes I really feel the fact that I’m living on borrowed time, and that at any moment the blow might strike that precipitates a cascade of medical whatevers and sucks me back into the depths of being a reallysickcancerpatient. I don’t want to feel that way – I want to be making the most of every minute, living life to the fullest, not waiting for the other shoe to drop. (I figured since I haven’t entered remission, I get the luxury of not having to wait for that.)
And yet. Deep under the surface veneer of high-functioning girl-in-treatment lies a wavering doubter who’s got her hair-trigger finger on the on-call button. I wonder how she’ll do with the results of Wednesday’s CT scan.
Sort of a lot, really, to try to get out of an early-morning workout, dontcha think?
Don’t Come For The Housekeeping
I love entertaining. I don’t know whether I inherited it from my mother, who also loves throwing a good party, or whether it just gives me the excuse to wear frivolous shoes in the dead of winter when I don’t have to leave my own house, but I love hosting guests. I adore planning the menu, shopping for ingredients, and cooking for an audience that’s usually more appreciative than my kids (although Mr. Wonderful adores all my food, the young’uns aren’t quite as culinarily adventurous yet).
It’s been really hard, as I’ve gotten sick/well/sick/well over the past few years, to have to pass off hosting duties to other people. I’ve been lucky enough that some of my mother’s visits have coincided with social events at my house, in which case I’ve relied, in varying degrees, on her shopping, cleaning, and cooking assistance. But for the most part, I’ve had to let numerous gathering opportunities slip by. I just didn’t have the stamina for prepping the house, kitchen, table, bar, appetizers, etc., to be guest-worthy. And I wasn’t willing to let my standards drop.
We had a big New Year’s Day Open House this year, a big drop-by-whenever food-and-drink extravaganza that strikes me as the best kind of party for the current commitment-phobic party-goer. It was amazing, with lots of friends from different walks of our lives, hordes of kids, plenty of delicious food and Champers all afternoon. But the set-up took a few days, with the cleaning and all, and clean-up (thanks in no small part to Mr. W again) a couple days afterwards. I just don’t have the endurance to throw big-time shindigs as often as I want.
This weekend, we had some friends and their kids over for dinner on Saturday night. They’re good friends, our kids are all great buddies, and I know they’re casual folks. And although I ran the vacuum before they came, and made the little ones put away their stuff (aren’t parties great for clean-up impetus?), I stopped caring about the dust bunnies under the couch, or the piles of stuff on “my” end table. I was content to serve dinner on paper plates, and the condiments (salsa, sour cream) out of their containers with spoons. I think I might have gotten over the mortal fear that I would be judged on not decanting everything into little serving bowls, and accepted the fact that not using every dish in the house is, in fact, a worthwhile excuse for wrapping the tortillas in foil.
I can either expend my somewhat limited daily ration of energy preparing a delicious meal for my friends, or I can waste it worrying that anyone will notice that, behind the closed shower door, it’s maybe been a couple of days weeks longer than White House standards probably dictate since I’ve scrubbed the tub. And that’s just ridiculous, seeing as how I have a much better time hosting a party than cleaning my porcelain.
So the next time you come for dinner/brunch/a cookout at my house, you should be honored to have been asked. It means that not only do I love you enough to want to cook for you, but I trust you and the depth of our friendship enough to realize that you don’t love me for my table-setting prowess, and you’ll be my friend with or without the cobwebs across the recessed lights. Bon appétit!
Photo courtesy bonappétit.com
Swimmingly
I’m not sure what it is about swimming that appeals to me. Probably not the part where you have to wear a bathing suit, although it’s hard to get a decent tan fully clothed. (That’s a whole ‘nother post, that one.) And it’s probably not the part where you get all wet and your hair goes nuts and your makeup washes off. (Gee, now I sound like a high-maintenance princess.)
I was on the swim team for years. Not fast, usually last. Practice went on forEVer, and you can imagine how appealing that was to the Class Couch Potato. I still wonder whether the only reason I did it was to keep my family from pestering me about never getting any exercise.
But I love to swim. In a lake, in a pool, in a river, in the ocean. The best part is swimming underwater as far as I can, trying to make it to the other end of the pool in one breath. Something about the isolation, the peace of the water bubbling past my ears, the dolphinity of the whole experience really zens me out. The blue of the pool, or the dark coolness of open water.
And then there’s snorkeling. Last week, after absent-mindedly skirting around the reefed edges of the cove beach where we were staying, Mr. Wonderful and I rented sea kayaks (!) and took the boys for an adventure to a small cay about a mile off the shore. When we had beached the boats, the boys and I explored the beach and the Custom House ruins, while Mr. Wonderful explored the apron of coral that wrapped around the south side of the cay. After half an hour in the water, he came ashore, handed me the fins and mask and said, “You won’t believe this backyard treasure.”
Compared to the anemic reef left on the mainland, this was like comparing the zoo to the African veldt. Huge schools of fish, forests of healthy coral, herds of black sea urchins gathered under overhangs. Riotously colored parrotfish crackling nibbles of algae and making sand of old reef. Angelfish the size of manhole covers. And all the while, the gentle sway of the waves and the quiet of my breath in my ears. I was overcome with the simplicity and peace of the scene, the utter irrelevance of humans to the intricate relationships playing out below me.
I stayed in the water until my goosebumps had goosebumps; giving up was almost unbearable, like leaving a loved one for a long journey. I could have gone back in and stayed for days, but we only had the boats for three hours. I didn’t snorkel again during the last three days of the trip – I guess I didn’t want to be disappointed if the next reef didn’t measure up. But the pool opens in two weeks…
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There’s no way to capture an experience like that on film or video, so I’m sorry I can’t share it with you. Do you have a favorite meditative place?
The cay is on the right side of the photo. Best snorkeling ever. Photo courtesy www.maho.org.
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.
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.
