I Got The Fever

August 22, 2010 at 8:30 PM (Energy, Mood) (, , , , , , , , )

Jeez, just when you think life is getting a little predictable.

Week 4 of Cycle 2 snuck up on me. I was pleasantly surprised to discover, at my Monday appointment last week, that it was my week off of the Magical Mystery Drug. Skipping home an hour earlier than expected, with food in my tummy and a song in my heart, I anticipated a light and relatively carefree week of getting back into shape, tasting my food and drinking cool fresh water, spending time with my boys, and a long-anticipated family reunion weekend on the beach full of champagne, good company, and steamed fresh lobster.

Ha ha, said the universe, guess again.

Monday night at around 9:30, I started feeling like I was getting a fever. That’s weird, I thought, I don’t get sick. (Well, apart from the obvious.) Checked with the thermometer: yep, 101. Tylenol PM, bed. Tossed and turned all night, but by morning, it was gone. Felt better Tuesday morning, although not well enough to make it to yoga. No sign of fever, until about 5pm. After checking in with the team, they said if the fever went away that evening with two Advil, I was okay, but if not I should come in to see them Wednesday. Which of course I wanted to avoid like the plague.

Wednesday dawned sunny and fever-free. The boys and the dog and I spent the better part of an hour and a half in the woods hiking, feeling pretty smug. Until I lay down for my nap, and felt the fingers of fever starting to creep up my neck. I ignored them and tried to go to sleep, but I knew it was futile. Called the team and they said, “Come on in.”

Which is always fun with two kids. But they were fed copious amounts of bagged snacks and watched the Cartoon Network while I saw everyone, peed in a cup, gave blood cultures from port and periphery. I stumped everyone with my lack of symptoms, but that night the fever was back again.

And Thursday night. Good news: Mr. W makes dinner and cleans up from it. Bad news: Friday morning I get a call that I have a UTI. A UTI? With no symptoms? Oh, yippee, back on high-grade systemic antibiotics again. And they do nothing to kill the fever.

So I muscled through Friday and Saturday with nightly fevers, the usual fallout from antibiotics, and no energy. It was great to be on the beach and see family members from far and wide, but I wish I’d felt well enough to enjoy it.

And when I’m sick-sick, not just chronic-sick, nothing else gets done. No reading, no exercise, and as you might have noticed, no writing.

Let’s hope this… whatever is gone by tomorrow, so I can deal with a day at the hospital, the fallout from CT contrast, and more Magical Mystery Drug. And write about something a little more interesting than boring crap like my internal temperature.

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Finally.

July 17, 2010 at 10:29 AM (Energy, Mood, Treatment) (, , , , , , , , , , )

For those who aren’t on facebook (I understand, really), you might have missed my jubilant post-blog update on Monday: THE TRIAL DRUGS ARE WORKING. Those nasty little grey capsules that make my mouth taste like a dirty ashtray are actually worth the loss of my taste for chocolate. (Sad but true.)

I climbed out of the PET scanner on Monday and (after a brief trip to the cafeteria for my first food in over twelve hours) went straight to the Phase I doctor’s office. His preliminary read of the scan thirty minutes later showed a “marked decrease” in the metabolism* of the cells in my calcified tumors and lymph nodes, the ones that we had pegged as stable. While he offered no opinion of the new mets in my lungs, and I’ll have to wait for a full radiologist’s report on the scan for that, he was very excited about the “dramatic” change in my tumors. He said that the trial had shown the best results for ovarian patients, and that they were thinking about designing a Phase II trial for ovarian patients based on the good results. Including mine!

I’m beyond thrilled to get some good news for the first time in eighteen months, and REALLY glad that all of this rigamarole that they (Big Pharma) are putting me through for this drug might actually have an impact on other patients of this crappy, insidious, sneaky-ass disease.

Next week: further results of the PET scan; CT scan and results, and a week off the drug. Rash? No rash? Increased energy? We’ll see.

But you can quit mentally divvying up my couture for the near future. Vultures.

*PET scans work by reading the rate that your cells metabolize an injected radioactive sugar solution. Cancer cells metabolize sugar at a much higher rate than healthy cells, so after sitting with the solution in your bloodstream for an hour, they run you through a scanner and read the “hot spots” that have metabolized the most radioactive solution. These are measured by the amount of radioactivity they emit, and the rates are compared from scan to scan.

Photo courtesy images.

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Give Me a Break

July 7, 2010 at 4:14 PM (Energy, Mood, Treatment) (, , , , , , , , , , )

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.

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Low Simmer

June 14, 2010 at 1:30 PM (Energy, Hair, Mood, Treatment) (, , , , , , , , , )

Lying around and growing tumors is hard work – I’d forgotten how much it takes out of you. I’ve been drug-free for two and a half weeks now, and I can feel the evil creeping up. Which gets a girl to thinking: thank heaven for modern medicine. How much time would I have without the upcoming trial? Six months? Four? What would my quality of life be? Yeesh.

Fatigue is a constant companion now – I feel like I’m wearing a diving weight belt around my waist. Going to the gym is a bit of a farce, and if someone hadn’t invented the Chuckit!, I think my dog wouldn’t be speaking to me anymore. The cat, on the other hand, is so glad to have me back on the lazy side of the fence.

My trial coordinator said that they are getting “encouraging” results from GDC-0941, and my oncologist is “very excited” to get me on board. I have a full day of tests (EKG, CT, blood tests, urine culture, etc. etc.) set up for today, and then I start the trial on the 21st. I’m feeling optimistic, but wondering how much progress the tumors will make by then. I hate to give up any ground from my chemo of last summer – it feels like I’m betraying the hair loss, fatigue, and all the side effects I went through to “let” the tumors grow back. Especially since I currently resemble Mike Brady. Yea, hats!

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The Silent Treatment

May 27, 2010 at 8:51 PM (Energy, Family, friends, Mood, 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.

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Insult, Meet Injury

May 21, 2010 at 10:16 PM (Energy, Mood, Treatment) (, , , , , )

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

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Erosion

May 12, 2010 at 12:09 PM (Energy, Mood, Sleep) (, , , , , , , )

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 http://www.reallynatural.com


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Don’t Come For The Housekeeping

May 9, 2010 at 8:15 PM (after chemo, Energy, Family, friends) (, , , , , , , , , , , , )

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

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Hitting the Life-Reset Button

April 29, 2010 at 9:21 PM (Energy, Family, Recovery)

Every so often, life gets chaotic enough that I need to call a truce, a time-out. Too many obligations, too many dust bunnies, too much stress – I’m not myself anymore, and mama needs some sunshine.

We got back Tuesday night from eight days in my Happy Place, and I feel like I rebooted. I’m not sure the majority of my restored good attitude wasn’t due merely to the fact that I wasn’t cold anymore, or that the inside of my dried-out nasal passages no longer felt like I had stuffed porcupines up there, but i’m betting the beach and the family time had a little something to do with it.

Really, how often do members of our go-go modern society really get to check the heck out? To reduce the magnitude of our daily decision-making to whether to have a Corona or a rum punch before watching the sun set? Unspeakable luxury has nothing to do with white tablecloths and marble vanities, and everything to do with the freedom of mind to let go.

Our vacation distilled life down to the essence: a place to lay your head, a spectacular view, modern plumbing, good food, plenty of outdoor activities, swimming, and time with my family. No computers, no phones, no TV or video games… read a book and fall asleep to the crickets and the surf at 9:45. Wake up with the sun, HUNGRY, eat a big breakfast (prepared and cleaned up after by someone else, v. important), spend all day exploring (or, hey, napping) in the sun, eat more good food, go to bed. Repeat.

If you haven’t taken a break in a while, I really urge you to try it. Get a massage. Go out for a meal. Take the afternoon off. Take the week off. Try something new and scary. Reassess what you really need to be happy. Grouchy is no way to go through life. It’ll feel like a different world when you get back, I promise.

Cancer? What cancer?

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Still Looking For The Perfect Genes

April 18, 2010 at 11:05 AM (Energy, Treatment) (, , , , , , )

Got a letter from the Cancer Factory yesterday – my tumors are not genetically eligible for the EGRF or HER2 receptor studies now underway at that esteemed institution. So I keep on with the Avastin and Cytoxan and see what other groovy trials are available next month.

Kinda feel left out, though, you know? Like a rejection letter from my first-choice college. Damn, now I have to go peel the sticker off my car window.

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