Natalie Cole is the latest celebrity to be diagnosed with Hepatitis C. Readers who have been with me since the beginning have read plenty about my own battle with the disease. I probably contracted it in 1980 during my original surgery for scoliosis, although it wasn’t diagnosed until 1997. I underwent a year-long treatment from 1999 through 2000 and, God willing, this August will celebrate eight years of remission.
I don’t know why I’ve been given two diseases to deal with that have very non-specific symptoms and are hard to diagnose. (My mom died of ovarian cancer and I am screened regularly for that disease, which has symptoms that can mimic IBS and a host of other illnesses.)
I’m also still dealing with my spine, and had my most recent spine surgery in 2004 to correct a symptom known as “flatback” caused by the Harrington rods used to prevent the curvature of my spine from increasing. You can read about that here, complete with sexy pictures.
I figure that all my medical problems, combined with my background as a medical malprctice defense lawyer, make me one of the most well-educated health consumers around.
What I’ve learned from all my dealings with the health care system is that you can’t ignore your body when it’s telling you something’s wrong. Second, if you must receive medical treatment, it’s up to you to manage your health care. Ask questions. Make sure all the proper tests have been ordered. When your blood is drawn, ensure that it’s labeled with your name and not the patient’s next to you. Follow up on test results– don’t just rely on the doctor to call you back.
And run, don’t walk, to get a copy of the book I shill from time to time, Jerome Groopman’s Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine, which is a wonderful view of medicine from the other side.
I’m always happy to answer questions about any of these diseases, and you can read more about them by clicking on the link under Categories in the left sidebar that corresponds to the illness you want to know more about. I’ve done enough research and interviewing doctors for all of us– no need for you to reinvent the wheel!
Two years ago in My Tiny Kingdom: Atten-shun!
My mom died suddenly two and a half years ago . She’d just been diagnosed with ovarian cancer. Her cancer was quite advanced by the time it was detected, which is too often the case.
I guess people who haven’t lost a parent think I should “be over it,” but the truth is that I think about her every single day. I don’t guess I’ll ever get over it.
About the only thing I can do is to try and make some good come out of this horrific event. And so, here’s some information about ovarian cancer so that you can help prevent it and throw some money at it if you’re so inclined. It would be fantastic if a cure, or at least a decent method of detection for this deadly cancer could be found.
They call ovarian cancer the disease that whispers. Ovarian cancer is difficult to detect because its symptoms are easily confused with other diseases, such as irritable bowel syndrome. There is no reliable, easy to administer screening tool that can be administered to all women. The blood test that detects a protein in some women with ovarian cancer, the CA-125, often is not positive until the disease is in its later stages. The CA-125 is elevated in only 25-50% of Stage 1 cancers, making it ineffective as a screening tool. Ultrasound can identify masses in the ovaries, but cannot tell if the masses are cancerous or not.
The five year survival rate for women diagnosed when their cancer is in Stage 1 is 90%. The overall five year survival rate for ovarian cancer is 50%. At Stage 3 the five year survival rate is 35-40%.
By the time my mom’s cancer was diagnosed, she was suffering symptoms such as shortness of breath, bloating, and lack of energy. Her doctor drained over a liter of fluid from her abdomen the same day, and she was scheduled for surgery three days later.
I’m sure each of you know someone who’s been touched by ovarian cancer. If you can’t think of anyone offhand, perhaps some of these names are familiar to you: Gilda Radner, Madeline Kahn, Liz Tilberis, Jessica Tandy, and Shari Lewis. All died of ovarian cancer.
There are a number of actions you can take to help find a cure for this deadly disease.
There is a deadline for signing up to get your car tag to support ovarian cancer research in Alabama. Click here to download a form for the tag. You can do it BY MAIL instead of schlepping to the DMV! The deadline is RAPIDLY approaching so go ahead and click over and register now. I’ll wait. (The page also contains information about getting an ovarian cancer tag in Kentucky, and for starting the process to get a tag approved in your state.)
You can read about Brittany Waldrep, whose illness inspired the tag here in Alabama. She passed away in 2006 at the age of 25.
Additionally, we’ll be holding a MOTHERWALK to raise funds for ovarian cancer research on May 10 here in Birmingham. Last year my sisters and I formed a team to walk in memory of my mom and we plan to do the same this year. If you’re nearby, come join us!
My mom was always up for an adventure. When she was visiting Israel and she had the chance to ride a camel, she didn’t hesitate. She climbed right up on that camel and showed him who was boss.
Thanks for your support. Please pass this along to anyone else who might be interested in helping with this important cause.
What a delicious morning! Bill, our resident coffeemaker, is out of town, so I woke knowing I’d have to face the hated Cuisinart Grind N Brew and create something resembling java. Happily, Finn was cooking eggs and bacon and Porter had the coffee started.
His gesture wasn’t selfless. I mentioned earlier that he’s developed quite a love for the stuff, so we’ve limited him to half a cup in the morning. He began using larger and larger cups until we refined our definition to four fluid ounces plus one teaspoon of sugar, max, and reminded him where the measuring cups and spoons reside.
His coffee is just as tasty as Bill’s. I’m a lucky mom.
I’m feeling especially queenly for another reason. Nicole at Tickled Pink has posted an interview she did with me. Go check it out.
I didn’t want to freak her out by coming in just under deadline, so I left something out that I want to emphasize every chance I get. Besides E.B. White, I am obsessed with Dr. Jerome Groopman. I’ve plugged him many times before. His book Second Opinions is mandatory reading for anyone who’ll be dealing with the health care system at any point– THIS MEANS YOU!
I’ve dealt with hospitals, clinics, health care professionals and unprofessionals more times than I can count, and the simple truth is that you must keep up with your own health care, whether that means keeping up with what tests you’ve had or making sure the tubes of your blood get labeled with your name, not the bozo’s in the chair next to you.
Dr. Groopman also writes for the The New Yorker and has an allegedly interesting article in this week’s issue. I wouldn’t know; Finn stole my copy and read it. Infuriating, yet gratifying.
Anyone else hear Brian Williams talk about the new study that says taking birth control pills offers protection against ovarian cancer even after you stop taking them? Whoo hoo! I’d like to get off them and see if my migraines improve. I’ve been taking them only because of the ovarian cancer protection; perhaps I can rid myself of a medicine.
For those of you wondering exactly when it was that I decided that maybe Porter wasn’t as dumb as a stick, it’s a story called Letter Share that took place when he and Drew were in kindergarten. They’re now in third grade. Time doesn’t fly; this seems like eons ago.
Poor geography alert! Bill’s in Nebraska on business. We debated WHERE that state is before checking ourselves on Porter’s wall-size map. I was ashamed to have guessed that it was maybe to the left of Arkansas. I had the correct longitude but it’s actually two states up, just under South Dakota. I bet the folks in that fine state weren’t impressed with our tale of snow at all.
This Friday, the 26th, is the second anniversary of my mom’s death. Here is the first column I wrote about her death, and “A Blessing” provides a few more details. Here is what I wrote about the occasion last year.
You’ll see that some of these columns have tags under them– you can click on the tag “ovarian cancer” to locate other posts discussing my mom and her disease.
If you live in Alabama and you want to support research efforts for ovarian cancer, you can go to your county license plate office and ask the clerk for a commitment to purchase a special plate demonstrating your support. The plate costs $50, and $41.25 of that goes to the Oncology/Gynecology Department at UAB. This department performed my ovarian cancer risk assessment and is top-notch.
In Jefferson County you can go to the main courthouse or any satellite office and get in the tag line to fill out the paperwork. The $50 is tax deductible. The number to call is 205 856 8815.
You can also donate directly through the Norma Livingston Ovarian Cancer Foundation.
I’d appreciate it if readers in other Alabama counties would use the comments to provide information about the procedure to follow to obtain an ovarian cancer license plate in your neck of the woods. For those of you in other states, if you know of a special way to assist ovarian cancer research, please share. Please limit your causes to ovarian cancer, please.
Although I’ll be helping raise funds for Parkinson’s disease Friday, I’ve set aside some time to meet with my pastor and to think about my mom. As I raise my boys, I continually see how much I was influenced by her, and I’ll be eternally grateful for that.