A Hundred Gs, Part I
Alright, stop harassing me, I’m back.
A couple of items before I jump in:
- I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
- I hate winter.
The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.
I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.
Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.
Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?
That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)
And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.
Without this two months of feeling better, I might have missed this:
The A-man and his post-bar-fight face.
Tomorrow: Part II.
It’s September…How Are Your Ovaries?
I’m reading a book about how making split-second decisions from the gut can be just as effective (and in some cases, more so) as examining copious evidence and making logical, scientific decisions over time.
Wish I’d known that in 2005. Maybe then I would have listened when my body started shouting at me. “Hey! You’re tired! More so than the average mom-of-two-little-boys!” “Yo! Down here! You’re not gaining weight, you’re bloated!” “Run, don’t walk, to the bathroom – bladder pressure overload.” And “No, it’s not the protein bars – your bowels are NOT happy.”
All symptoms of ovarian cancer. Classic symptoms, as a matter of fact. Like, textbook. But I was sure that there were logical explanations for all of the things that were going wrong with my body, including the pelvic pain, which I convinced myself was a functional cyst, since it hurt worse when I was ovulating.
If I’d known more about what the symptoms of ovarian cancer were, if I’d known that HALF the women diagnosed with ovarian cancer are under age 60, I might not have convinced myself that I was too young and healthy to have anything really wrong with me. I might have gone to see my doctor in December, when I first noticed things feeling…different. Nothing I could really put my finger on, but my instincts recognized changes before my rational brain did.
Over 21,000 women will be diagnosed with ovarian cancer in 2010. 13,000 will die from the disease. I’ll fight that second number, but I need your help with the first one. Let’s increase our vigilance about ovarian cancer, even as we lobby for research funding and to get more doctors to take our symptoms seriously.
Let my 20/20 hindsight help you or a woman you love be aware of the symptoms of ovarian cancer, so you (or she) will get checked out by a gynecologist as soon as you experience them, and get treated early enough to get on the 85% five-year survival side of the statistics, instead of the 35% side where I am.
I know I make ovarian cancer look good, but this is one club you do NOT want to join. Tell a friend. Or thirty.
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.
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 