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!
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!”
I’ve been forty for barely a month now. I’ve always devoted considerable energy to keeping myself fit and healthy.
I Jazzercise. I don’t smoke. I eat fish. I learned that you should take fish oil capsules at night unless you want to taste tuna fish burps all day. When sexy television doctor Sanjay Gupta warned me to consume plenty of antioxidants to fight off free radicals, I listened and began adding a generous splash of POM Wonderful to my gin and tonics.
All my ministrations have been in vain. I now have proof that my body, which wasn’t so healthy at thirty-nine, has begun a steep descent into old age and decay.
When Bill and I were in New York, he noticed that I kept yanking my reading glasses on and off whenever I had to read something small– a menu, a price tag, a paper.
“Why don’t you buy a chain to keep those around your neck like other women do?” he asked.
“Because those other ladies are a lot older than I am.”
By the time I’d constantly pulled my glasses on and off for another day and almost left them at a Turkish restaurant, I gave in and purchased the tiniest, most inconspicuous “eyeglass necklace” possible.
Things went further down hill last week when I had a chin hair I needed to pluck. I could feel it, but I damn sure couldn’t see it. I tried looking in the mirror with my contacts on, and saw nothing but a blur. I put on my reading glasses but still couldn’t spot the hair well enough to grip it with my tweezers. Sighing, I removed my contacts and tried again. No luck. I resigned myself to the fact I’d have to wait until it grew to the length of a whisker before I’d be able to distinguish it from my skin.
I told my hairdresser, Teppie, about the incident, and she told me I needed a magnifying mirror. I told her that distressingly, I was using one at the time and I left out that detail only so I wouldn’t sound blind.
“I think you should see a doctor,” she advised.
So I did.
The most irritating aspect of the eye doctor’s exam is that they have not changed the letter and number combinations since the Bicentennial, when I first started wearing glasses. I have an astonishing aptitude for remembering strings of meaningless letters and numbers, which is invaluable for remembering everyone’s home, cell and social security numbers, but poses a problem when I’m asked to read the next line on the chart. Am I reading it, or merely remembering it? Trying to erase the patterns from my memory takes a great deal of concentration.
Perhaps that’s why I was caught off guard when Dr. C finished his exam, slid back his chair, and asked, “You know what I’m going to tell you, right?”
“I need stronger glasses?” I inquired. “Did I tell you about last week when I wasn’t able to see my chin whisker?”
“No, but I believe it. You need bifocals,” he said calmly, as if were recommending a new book and not an accessory that screams ‘OLD LADY! OLD LADY!’ He might as well have prescribed a walker and a case of Depends.
I snickered. “You know I’m not getting bifocals, don’t you?”
“Don’t laugh,” he said seriously. “They’ve come a long way. They make progressive lenses now that don’t have the line in the center of the lens. They take some getting used to and they don’t work for everyone, but no one can tell you’re wearing bifocals.”
On the drive home I convinced myself that getting bifocals wouldn’t be a complete catastrophe. I’m already used to wearing glasses a good deal of the time. If no one knew they were bifocals, I would still be as pert and sexy as ever.
I got home and googled the newer models. What I learned wasn’t reassuring. It was downright devastating.
The “progressive” lenses are crafted so that they correct for distance at the top of the lens, for intermediate vision in the middle of the lens, and for reading at the bottom of the lens, like so:
As you can see, the area corrected for intermediate, or “walking around” vision is quite small. Thus, you can’t move your eyeballs back and forth to gaze at things that are not directly in front of you, as you’d be looking through the area that is not corrected for anything. Wearers report that the non-corrective part of the lens is generally fuzzy and one woman reported seeing an upside-down image of a cow there while standing in a room in which no cows were present.
Users who enjoy the glasses noted that the solution is simply to turn your neck to follow moving objects. People who have little neck movement, due to previous spine surgeries, perhaps, would have to move their entire bodies to watch an object in motion. Remember Joan Cusack in Sixteen Candles? That’s how I’d move every time I put those bifocals on.
What I found more alarming were the frequent warnings not to look down at your feet as you walked while wearing the progressive lenses, for the ground would appear closer than it actually is, resulting in falls.
Last time I fell I broke my wrist which led to good home training for the boys but also to fashion felonies on my part. It was a painful and expensive way for the guys to learn to load the dishwasher.
By the time I read reviews from wearers who complained of “whirlies,” nausea and headaches and the comments from the visually-impaired who’d never learned to safely walk in them, I’d had enough. My bones felt brittle, my eyes were fatigued and I actually heard gray hairs springing from my scalp.
Then I felt a bit sorry for myself. I’ve had a decent attitude about the scoliosis, the bum liver, the crowns and root canals and the frequent checks for ovarian cancer. I’m ready for some anatomy to work correctly without major effort on my part.
So when Bill got home and I told him about my appointment, I’d narrowed down my objections to even trying the glasses to one succinct statement.
“I can’t make love to you with a pair of bifocals on the nightstand,” I decreed.
I’m making an appointment to see a surgeon for Lasik next week.
As my long time readers are aware, I consider myself an expert at navigating the healthcare system. I’ve developed my talents out of sheer necessity. After you’ve had someone chase you with a specimen cup of what may (or may not) be your urine, or gotten a call that the lab lost the eight tubes of blood they drew last week, you stop depending on doctors and nurses to be perfect and start looking out for yourself.
I developed these skills during my fight against hepatitis C and my spine surgeries, both of which I’ve written about in previous posts. However, my body has been cooperating with me lately. My liver and spine are both doing well and I’ve had a brief respite from spending too much time with doctors.
All this changed once my mom died of ovarian cancer nearly five months ago. (If you’re a new reader, you can read a post about the circumstances of her death here.)
Ovarian cancer has claimed a number of famous victims, such as Gilda Radner, Elizabeth Tilberis (Editor of Harper’s Bazaar) and and most recently, Coretta Scott King. After Mrs. King’s death, several papers published articles describing the disease like this one. Some also reprinted the signs and symptoms of ovarian cancer, which can be found here. My mother experienced most of these symptoms before her diagnosis.
After Mom died, I talked with my mother’s oncologist and my gynecologist about the steps I should take in order to lessen my own risk of contracting ovarian cancer. I started taking a low dose birth control pill under the theory that preventing ovulation reduces the chance of developing abnormal cells.
My doctors also recommended that I get a CA-125 blood test (a test for tumor markers) and a vaginal ultrasound every six months so that any abnormalities would be detected as early as possible. As with many cancers, early detection makes a huge difference in survival rates for those with ovarian cancer.
So I did. Not to get all Katie Couric on you, but here’s the proof:
Erica draws blood for the CA-125 test. She was a good sticker!
I get ready for the ultrasound. Thanks, Kim, for keeping up a light conversation to keep my mind off things during the procedure, which was painless.
Thankfully, my tests came back clear. The screening is something I’ll repeat twice a year for the rest of my life. If you have a reason to believe you are at risk for ovarian cancer, you should do it too.
I’ve plugged this book before, but Jerome Groopman’s Second Opinions is
a worthy read, which emphasizes the importance of trusting your own
instincts, getting second opinions, and asking questions when you’re
facing a health issue. Complications: A Surgeon’s Notes on an Imperfect Science
by Atul Gawande also stresses that healthcare professionals are simply
human, subject to making mistakes just like the rest of us. Both are
easy to read and understand.
I’m packing up my soapbox now!
PS- Yes, once again, I’m in my Jazzerwear. You’d think I could visit the doctor or wax my mustache in decent clothes, and maybe put on a smidge of makeup. I’ll try to do better.