Lighten Up
Last week we had a mini-vacation and went to stay with friends on Martha’s Vineyard. We slept in, ate too much, had beers with lunch, napped on the beach (my favorite four-word phrase in the English language), went out one night without the kids and finished conversations. Ate s’mores. You get the idea.
I had succeeded in mentally reminding myself for three mornings not to forget to carry with us or administer my delightful meds (which must, you remember, be kept under refrigeration below 46˚). Since there were coolers all around, going to the beach, etc., I was able to dump them in and choke them down in the vacation-short space between breakfast and lunch.
Reluctantly, on Saturday we packed up our bags, double-checking under beds, nearly forgetting swimsuits and towels drying on the deck rail. I loaded my bottle of iced tea and the boys’ water bottles into the freezer to cool down before packing the cooler for the trip home.
The horde of us descended on a fish shack in Vineyard Haven to grab some lunch before catching our 2:30 ferry. As we waited with the hordes of other hungry people for our lunches, though, we realized we wouldn’t have enough time to eat and still make the boat. We grabbed our bag of sandwiches, said goodbye to the wife and kids of the family we stayed with, and the dad drove us the rest of the way to the ferry dock. Hugs all around, double-check the back of the car for our stuff, and bundle ourselves into the growing line of passengers waiting to climb aboard.
Son #2 dropped his Gatorade bottle for the seven-hundred-and-forty-third time, and I told him, “One of these times, that bottle’s going to split open, and then you won’t have anything…to…drink…but…water…until…” ::Crickets::
“Mr. W, did you grab the cooler?”
“No.”
Crap. “Left my damn drugs at the house!”
I turned and started running (wearing a 35-lb backpack, no less) out to the street where I could see our friend had just been waved into heavy Saturday August Vineyard traffic by the cop trying to keep order. Thank heaven his window was open.
“MARK! MARK!” He turned to look at me.
“I LEFT MY DRUGS AT YOUR HOUSE!!!” (In hindsight, not the best sentence to shout across a crowded intersection in front of a policeman.)
Revision: “I left my meds in your fridge!”
He pulled back into the parking lot, and my three gentlemen shuffled over and got back in the Jeep. I started in browbeating myself about my forgetfulness. “Jeez, I can’t believe I forgot it. I’m so sorry to make you have to come back. I can’t believe I didn’t remember that stuff! How many times did I remind myself that I had to get the cooler? What an eejit.”
This went on for about five minutes. Then I stopped for a second, and realized that I was the only one beating me up about it. Not even any teasing (unusual). And in a flash of maturity, I quit. No one seemed to be upset about having to miss the 2:30 but me. And on second thought, what the hell did I care? Why was I getting all jacked up?
We rode back to the restaurant to finish lunch (the best lobster roll I’ve had in years) with our friends. There was another ferry at 3:45, which meant we’d get home to pick up our dog a little later. No harm, no foul – it’s not like we had an appointment or something waiting back on the mainland.
This verbal self-flagellation is a lifetime habit for me, and I suspect for many others. Does it come from my desire to cut on myself before anyone else gets a chance to? Or am I so concerned about inconveniencing others (and possibly having them speak disparagingly about me after I leave) that I am trying to make sure they know I’m not really that inconsiderate? Whatever the reason, it’s stupid, and a waste of energy.
It’s time to adopt the Dr. Seuss quote I heard recently and have come to adore: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I’m a good person, my friends know it, and my life is way too short to spend time browbeating myself for mistakes. Everyone makes ’em, and we’re all doing the best we can. Move on.
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.)
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.
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.
Drat. Mom Was Right Again! And Here’s A Cornell Study To Back Her Up.
When we used to go outside to play in the snow, Mom always told us to put a hat on. We’d ignore her (hats were NOT cool in the ’80s – hard on the feathered hair or some such) and slog around for twenty minutes, then come inside complaining that our feet were cold. “If your feet are cold, put a hat on,” she’d say. What kind of fool sense was that? If your feet are cold, clearly you need better boots. With wedge heels and faux shearling peeking over the top. Or possibly we just needed hot chocolate.
Now that I’m a cancer chick, I’ve come to realize that there may be something to this “cold feet/body = cold head” thing. Without hair, I’m FREEZING. All the time. From mid-June to mid-October, I’m okay, but the rest of the year? Cold. Layers, and lots of them. One of the layers must be wool (ok, cashmere), including the socks, or I’m shivering. I have rediscovered the magic of hats (and thank Kors they’re fashionable again!), and wear one all the time, inside and out. (Side benefit of baldness regrowth: no hat-head!)
My constant hypothermia has become a bit of an inter-gender needling trigger chez moi. Mr. Wonderful, whose metabolism usually runs at a high boil, is comfortable in the house in a t-shirt and jeans, bare feet. Occasionally he’s been known to take the dog out in the snow in said bare feet. He’s comfortable with the thermostat set at 64 (financially as well as thermally). My boys are always complaining that when I’m cold I make them put on sweaters. I, as previously noted, am only really warm in a hot shower or tucked into bed in (dead sexy) flannel PJs and a (dead sexy) fleece hat. Oh, and please set the thermostat to at LEAST 67. Preferably 69. All three boys find my shivering amusing, and think I’m making my griping up (but have come to expect that I’ll get them with my frosty fingers in the ribs at least once a day).
Today, there’s proof for the ladies. I discovered that some researchers at Cornell have released a study that proves that bald people are colder than people with hair! That’s right, four Biological and Environmental Engineering students put sensors on the heads of test subjects and put them in a cold environment for twelve minutes. They already knew that the head is a major source (60 to 80%) of heat loss (Mom was right!). The test subjects with hats showed little difference in head temperature regardless of hair length or thickness, but subjects without hats showed much higher heat loss through the head if their hair was shorter than one cm, and once their hair length reached two cm it started adding significant insulation to the skin.
I don’t think my hair is two cm long yet, but even if it were, I’d still quote this study. Rock on, my hatted bald-chick peeps.
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 
