Friday, March 25, 2005

Welcome to OC—it's a bitch

One year ago this month, my uncle's wife was diagnosed with stage IIIB (advanced) ovarian cancer.

As the daughter of a woman who died of OC in the 1960s, Aunt S. was especially vigilant about her health. While no screening test has been validated as an effective means of detecting OC, S. made it a point to undergo regular ultrasound examinations and has also had CA-125 blood tests (CA-125 levels often are elevated when OC has taken root). She had an ultrasound in January 2004 that showed nothing out of the ordinary; at that point, the cancer had probably been growing for a few months already. S. went from doctor to doctor, trying to find the cause of a variety of abdominal symptoms. In March, a doctor diagnosed gallbladder trouble, and sent her to the hospital. At that point, the cancer had caused so much fluid buildup in the abdomen (ascites) that the docs drained a couple liters of fluid—and found cancerous cells.

Within a couple weeks, S. had major surgery to remove the ovaries, uterus, gallbladder, a cancerous appendix, and a few other organs. The surgeon was unable to tackle the hundreds or thousands of cancerous nodules clinging to the abdominal cavity walls, the intestines, and who knows what else. The recovery was difficult and she spent three miserable weeks in the hospital.

S. has been receiving chemotherapy ever since, and the weekly chemo regimen she's on is wearying. The cancer has not grown appreciably, but it also hasn't gone away. It does seem to be present in the lungs now, and possibly has been there the whole year; this causes recurrent fluid buildup in the lungs, which has necessitated a couple hospital stays. The latest serious complication is a blood clot in the leg (deep vein thrombosis), arising as a result of the cancer itself or of the chemo port.

Ovarian cancer is a terrifying disease. So hard to detect, even with the best tests available today. So hard to treat, no matter how many different chemo drugs are tried.

My cousin L., of course, having a mother and grandmother with OC, faces a sharply increased risk herself. She's 38 and hasn't had any kids yet. She's already had one ovary removed (it had a benign tumor), and has been advised strongly to have the other one out by age 40. (Instant menopause! So much for having a baby.) Removing both ovaries drops her OC risk considerably, but OC is evil: Even after the ovaries are gone, OC can still arise in the peritoneal tissue.

L. is also one of my dearest friends. My son is probably closer to L. than to his grandparents. She is going to lose her mother soon—this is not in dispute. I don't want to lose my cousin, too.

Do you know what the total government funding is for ovarian cancer? It's something shamefully insignificant like $10 million a year. (Compare to various line items in the military budget and be outraged.) The only way we will ever be able to beat this fearsome disease is to put MUCH MORE MONEY into research and awareness.

That is why L. and I will be taking part in the Walk for the Whisper this May 7. The money raised will help the Illinois Division of the National Ovarian Cancer Coalition increase research funding and public awareness. I'd like to ask everyone reading this to sponsor me and L. in the Walk for the Whisper, but I realize that's difficult logistically.

What's much easier, though, is for you to go to the NOCC's donation site and give the gift of hope for a better future.

Every woman should know the early symptoms of OC. The scariest thing is that these symptoms don't shout "ovarian cancer" to most people: Bloating, gassiness; frequent or urgent urination; nausea, diarrhea, constipation, indigestion; menstrual disorders, pain during sex; fatigue, backaches. If you have any of these symptoms lasting for more than 2 or 3 weeks, see your doctor. Mention ovarian cancer to the doctor, and don't let the doctor pooh-pooh your concerns. Ovarian cancer is so deadly because it's so seldom diagnosed early. These vague and innocuous-sounding symptoms are often the only clue. Waiting until a tumor can be seen on ultrasound can mean waiting until the cancer has reached an advanced stage.

If you make a donation to the NOCC, would you please leave a comment or send me an e-mail so I can thank you personally? And all of you, would you please e-mail the warning-signs link to the women you care about? Thank you, thank you, thank you.


bitchphd said...

So but if someone did want to sponsor you, how does it work?

Orange said...

You could send me a check or some cash, or I could send you a form to put your credit-card info on (and I promise, I'm really good about not stealing people's financial identities or running up their credit-card balances). We can swap addresses via e-mail.

Anyone who's interested in going this route, please write me through the "Email" link on my profile page. Thanks!

Psycho Kitty said...

O, you should set up a PayPal account.
This is so scary. Ugh. I'm so sorry about your aunt.

Anonymous said...

I'm sorry to hear about your aunt. My mother is currently undergoing chemo for her second bout with OC, which after a year of remission has returned to her liver. She, my aunt, and I walk in the NC branch of the walk in September. Good luck to you.


Orange said...

Catte, your mom is in my thoughts. I hope the chemo beats back the recurrence, and I hope your mom doesn't hate chemo as much as my aunt does. I know it's a tough time for you as well—hang in there.

Emma Goldman said...

Question: How can it be diagnosed, except at the later stages? CA-125 levels don't seem to do it, and the symptoms themselves aren't going to be enough to diagnose OC, are they?

Anonymous said...

Don't quite know how I made it over here at this time, since I've never read this blog before. Serendipity, I suppose.

Anyhow, Emma, CA-125 isn't foolproof, but it can be a good indicator. As orange said, the problem is that the physical symptoms that would lead one to get a CA-125 don't typically show up until the disease is advanced. Research is currently going on to find better ways to detect early OVCA.

One of the best things you can do is to have your gyn do a rectovaginal exam (that's one finger, inserted in both your front and rear lovlies at the same time) instead of just a regular old pelvic. It also isn't foolproof, but it can detect OVCA, whereas a regular pelvic won't (I had a regular pelvic three months before my diagnosis at stage IIIC).

Hope that helps. And thanks, orange.