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!
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.
Many of you were entranced with the story of Finn training for his first full-length triathlon, especially when an innocent whiff of sexuality reared its head: the presence of a girl, whose entry into the race prompted Finn to scoff at the idea of participating in the event as part of a relay team. If Allie was going to swim 600 yards, bike 16 miles and run 3 miles by herself, Finn wasn’t going to let the fact that she’d be ahead of him and he’d be staring at her rear the entire race deter him from doing the same. That may have been a motivating factor, actually.
You’ll remember that once Finn decided to compete, Bill decided to devote his spare time to coaching Finn through his training, sacrificing his own participation in the race.
At first the training was hardly noticeable. Bill and Finn would get up early to swim or run; on the weekends they’d take a long bike ride.
As the race drew nearer, their sessions grew longer. I was able to overlook the time they spent going over schedules and strategy as long as it didn’t interfere with my plans.
And then it did. One Sunday Bill and Finn set off on a brick (a bike-run combo) later than I thought healthy, given the temperature, or wise, given my impending weekly run to Publix and subsequent need for strong, energetic males to help unload a van full of groceries. When I pulled in the driveway I was greeted only by Porter and Drew, who are enthusiastic about unloading but less interested in the putting away. Plus, they are careless about egg and light bulb transport.
When Bill and Finn came home I got the usual excuses: a flat tire, extra-hot temperatures. While I knew that these things happen to triathletes in training, I also recognized that perhaps things were getting out of hand. Finn hadn’t started his summer reading or touched his drums in weeks.
We went on our annual beach trip the week before the race, and Bill tried to keep Finn on his training regime. But Finn hadn’t seen his friends all year, there was body surfing to do, a dance contest to organize, and Bill began to question Finn’s commitment to the project.
I didn’t realize how emotionally invested Bill was in Finn’s performance until halfway through beach week, when Bill called me from the other house where the ladies and I were knitting and chatting, to see if Finn needed to go to the hospital. They’d just returned from a brick and Finn was lying on the sofa.
“Honey, I think he needs to see a doctor, quick,” Bill said urgently. “We got off the bike and started the run and he complained he was dizzy and I about had to carry him back to the house. He was having trouble breathing. Maybe it’s a heart murmur, or he’s punctured his lung. Or wait, do you know the symptoms of a stroke?”
I looked at Finn. He was sprawled across the couch, sweaty, closing his eyes, and panting dramatically.
I looked from him to Bill, my soulmate, the man who took pain pills after his vasectomy only because I threatened to stomp his jewels if he didn’t. My lover, who believes hospitals are where you go only when you’re bleeding out or having major surgery.
“Let me check him out,” I said.
I turned to Finn.
“Hey, dude, how late did you stay up last night?” I asked.
“I don’t know,” he said. “Pretty late.”
“What did you eat for breakfast this morning?”
“I didn’t exactly feel like having much breakfast,” Finn said.
“So exactly how much food went into your belly this morning?” I asked.
“None,” he said sheepishly.
“Did you use your inhaler before your ride?”
“I forgot,” Finn said.
“How about fluids? Did you drink any water or Propel this morning?”
“I drank a little during our ride.”
I tuned back to Bill.
“Honey, you’re being a dumbass,” I told him gently. “This is not a boy with a punctured lung or having a stroke. This is a tired boy who biked and ran on an empty stomach, without using his inhaler or drinking enough water. If you take him to the hospital I am staying here. You two know better than this.”
To his credit, later in the day Bill apologized for overreacting and promised to spend the afternoon NOT thinking about the race. Instead he spent it drinking gin and making googly eyes with me.
It wasn’t the last drama we’d experience before the race.
Next up: The Race Is On (or, How Anne Saves The Day With Her Anal-Retentive First-Aid Kit)
A year ago in My Tiny Kingdom: My Special Club (perfect timing for this one)
Bill and I got married in August of 1993 and vowed to stay together “from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, as long as we both shall live.”
What we didn’t foresee was that I’d be diagnosed with Hepatitis C in 1997. That diagnosis would launch our journey through a series of medical events that have affected every aspect of our lives.
Finn was sixteen months old at the time, and Bill and I were told to finish our family so that I could start treatment as soon as possible.
As we look back at the last ten years of our marriage, we can see how each medical hurdle we faced prepared us for the next, more challenging one. We worked hard at completing our family, and Porter and Drew arrived six weeks early, in August of 1998. Bill’s experience watching me undergo an emergency C-section was his first alarming hospital experience. It wasn’t his last.
The duo spent several weeks in the NICU, and Drew was readmitted a week later after he stopped breathing. He was hospitalized another eleven days. I resigned myself to the fact that he was going to die, but Bill visited him faithfully each day.
Once the twins started sleeping through the night, I returned to work part-time. I began my interferon and ribaviron treatment for the Hepatitis C in February 1999. Each month I’d receive a cooler full of pre-loaded syringes with interferon, which had to be stored in the refrigerator. The first time I signed for the box and unloaded the shots, I cried for hours.
Three times a week Bill would give me a shot, and each day I’d take a number of pills. Although I was the one who was sick, we were all affected. The treatment was rough. I had to quit working, but I made it through the year-long treatment. I’m about to celebrate my seventh year of remission.
Once the liver adventure was behind me, I noticed that I was having trouble standing up straight and that my back was hurting more than usual. I spent a couple of years trying to get relief through physical therapy, a chiropractor, and pain killers, but by 2003 it was evident that the original rods and screws that had been placed in my back were now pulling it forward so that my natural swayback was disappearing and my vertebrae were lining up on top of each other like dominoes, a condition called “flatback“. (If you click the link, I could only stand up like the lady in Figure 2!)(And that’s my lovely surgeon!)
After a lot of research and interviewing several surgeons, I had spine surgery in January 2004 and that adventure is described here. Again, I was the patient, but Bill was there at each doctor visit, in the hospital, and after I was discharged.
It took a full year for me to recover enough to go to Jazzercise, and the first half of 2005 was marvelous. I felt better than I had in years, the boys were independent, and in July my mom took the entire family, including my sisters and their husbands and kids, out west to a ranch. It had been her dream for years, and she’d saved up her money and waited until the children were old enough to go and appreciate it.
We had a supernaturally wonderful time. We celebrated my mother’s birthday out there. I think she and Drew had the best time of anyone.
A couple of months later, I found out I’d been in remission from Hep C for five years, which meant I was officially cured. I specifically remember calling my mom and hearing her say, “Praise the Lord!”
We were busy with school and fall activities when my mom called to say she’d been diagnosed with ovarian cancer, and five days later she was gone.
Emotionally that loss and the way it has changed my family has been much harder than any of the other challenges we’ve faced. Just last week I dreamed I called my mom’s house and she answered. In the dream, I told her not to move, I’d be right there, because I had a whole lot to tell her about everything that’s happened in the last year and a half and even more questions to ask.
When I got to the house she wasn’t there. I felt dizzy for several hours after I woke up. Her voice had seemed so real.
Throughout it all, Bill has been there for me and for our boys. Our medical mishaps have been hard on him. It’s one thing to be in your fifties or sixties and taking significant time off work to care for a sick wife. People expect sickness at that age. It’s a different thing entirely to be thirty-one and handling a career, three kids, and a nauseated wife. It’s asking even more to go through the same exercise four years later, accumulating vacation time to hang out in your wife’s hospital room in New York and make medical decisions– should we transfuse or not?– while fielding calls from the health room back in Alabama to give permission for the administration of calamine lotion for a bug bite.
I haven’t even had the chance to care for him much. He had a vasectomy in 2001, and I planned my whole weekend around his balls, but the twins ended up getting croup just as I had put him on the couch in front of the TV and his Valium started to wear off. I spent the next two days sticking the boys’ faces in the freezer and the hot shower and throwing Bill a couple of pain pills and a new bag of frozen peas when I had a free hand.
August is a time of reflection for me. We celebrate Bill’s birthday, the twins’ birthday and our anniversary this month, and every year I look back at our marriage (fourteen years now) and think of all we’ve been through, good and bad.
There’s an anniversary card I found that sums it up perfectly. The cover says: “You’re the man my mother warned me about…”
And on the inside it says,”THANK GOD I found you!”