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 www.firstdescents.org
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?
Erosion
Some days I feel like a regular person. Aside from my daily nap, I run errands, walk the dog, cook dinner, sort the junk mail, fold the laundry. Except for my goofy haircut, you’d never know I am sick.
Today is not one of those days. I’m completely drained. I’m not sure if it’s the allergies (Massachusetts is covered in green pollen) or what, but in my Pilates class yesterday I had trouble completing any of the exercises (that usually make me sweat, but not collapse). It was as if someone was squeezing handfuls of the bottoms of both my lungs. We had a dozen errands to run in the afternoon, and by the time I’d dropped #1 Son off at soccer practice, I could hardly bring myself to heave my body out of the car and climb the stairs.
This morning seems to be little better. At the gym, I had to dumb-down my not-so-strenuous treadmill workout, and still hopped off every five minutes for a water break. At the park, I felt so fatigued I wondered if I’d make it back to the car. Even the dog seemed to know not to make me work too hard, and behaved himself.
At the risk of sounding like Pitiful Pearl, I’m flat. My feet are killing me. My sinuses feel like there’s been a knife fight. And I’m noticing that despite my ability to stand up to the flood of finite treatments and surgeries and to keep on truckin’ in the battle of Me vs. Ovarian Cancer, I’m wearing away, little by little, in the face of a slow trickle of endless chemo and side effects. Is it the Cytoxan? Is it the tumors? My lungs feel funny – is it the metastases? I can’t say, at least not until my next scan (5/19). But it’s getting harder to pretend I can do it all in the four hours a day I seem to be able to stay out of bed.
Gee, I might have to add a morning nap. That’d be terrible.
Photo courtesy www.reallynatural.com
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
More Funny Stuff I Didn’t Write
I got this list in an email the other night. With apologies to its original author, whose identity I don’t know, I have to repost it – sage advice clothed in sarcasm? Right up my alley. Enjoy!
Truths For Mature Humans
1. I think part of a best friend’s job should be to immediately clear your computer history if you die.
2. Nothing sucks more than that moment during an argument when you realize you’re wrong.
3. I totally take back all those times I didn’t want to nap when I was younger. [Ed. Totally!]
4. There is great need for a sarcasm font. [Ed. And I'm on it. Can you think of a creator more qualified? Stay tuned.]
5. How the hell are you supposed to fold a fitted sheet?
6. Was learning cursive really necessary?
7. MapQuest really needs to start their directions on # 5. I’m pretty sure I know how to get out of my neighborhood.
8. Obituaries would be a lot more interesting if they told you how the person died.
9. I can’t remember the last time I wasn’t at least kind of tired. [Ed. Boo-yah.]
10. Bad decisions make good stories.
11. You never know when it will strike, but there comes a moment at work when you know that you just aren’t going to do anything productive for the rest of the day.
12. Can we all just agree to ignore whatever comes after Blue Ray? I don’t want to have to restart my collection…again.
13. I’m always slightly terrified when I exit out of Word and it asks me if I want to save changes to my ten-page technical report fourteen-page creative-writing ode that I swear I did not make any changes to.
14. “Do not machine wash or tumble dry” means I will never wash this – ever.
15. I hate when I just miss a call by the last ring (Hello? Hello? Damn it!), but when I immediately call back, it rings nine times and goes to voice mail. What did you do after I didn’t answer? Drop the phone and run away?
16. I hate leaving my house confident and looking good and then not seeing anyone of importance the entire day. What a waste.
17. I keep some people’s phone numbers in my phone just so I know not to answer when they call.
18. I think the freezer deserves a light as well.
19. I disagree with Kay Jewelers. I would bet on any given Friday or Saturday night more kisses begin with Miller Lite shiraz than Kay.
20. I wish Google Maps had an “Avoid Ghetto” routing option. [Ed. Seriously! Esp. in Hartford.]
21. Sometimes, I’ll watch a movie that I watched when I was younger and suddenly realize I had no idea what the heck was going on when I first saw it.
22. I would rather try to carry 10 over-loaded plastic bags in each hand than take 2 trips to bring my groceries in.
23. The only time I look forward to a red light is when I’m trying to finish a text apply lipstick.
24. I have a hard time deciphering the fine line between boredom and hunger.
25. How many times is it appropriate to say “What?” before you just nod and smile because you still didn’t hear or understand a word they said?
26. I love the sense of camaraderie when an entire line of cars team up to prevent a jerk from cutting in at the front. Stay strong, brothers and sisters!
27. Shirts get dirty. Underwear gets dirty. Pants? Pants never get dirty, and you can wear them forever.
28. Is it just me or do high school kids get dumber and dumber [looking] every year?
29. There’s no worse feeling than that millisecond you’re sure you are going to die after leaning your chair back a little too far.
30. As a driver I hate pedestrians, and as a pedestrian I hate drivers, but no matter what the mode of transportation, I always hate bicyclists.
31. Sometimes I’ll look down at my watch 3 consecutive times and still not know what time it is.
32. Even under ideal conditions people have trouble locating their car keys in a pocket, finding their cell phone, and Pinning the Tail on the Donkey – but I’d bet my ass everyone can find and push the snooze button from 3 feet away, in about 1.7 seconds, eyes closed, first time, every time!
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.
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.
