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.
“Freeze Frame” is one of the worst songs ever recorded. It’s obnoxious and generates an earworm that chases you around all day. And so when our instructor played it at Jazzercise earlier this week and my tooth started hurting, I blamed the music.
But the next day I was dreamily gyrating along with Beyonce’s “Irreplaceable” and thinking that “to the left to the left, everything you own in the box to the left” would constitute the perfect instructions to Porter to clean his chaotic room, when an exquisite pain shot up my eyetooth and reverberated inside my nostril. I couldn’t blame this on the J. Geils band and I left Jazzercise and headed straight to the dentist.
To underscore the severity of the situation, let me emphasize that I’d rather plop my feet in the stirrups and spread my legs for a gynecologist brandishing a cold speculum than open my mouth for a drill-wielding dentist. I miss Jazzercise only in extreme circumstances. A voluntary trip to the dentist before we’d done triceps exercises to prevent underarm waggle denoted suffering of the highest level.
As I sat in the waiting room, I took out my calendar and looked at all the medical visits the Glamores have made thus far in 2007. It was an impressive list.
All three boys had dental appointments, which were unremarkable, except for the fact that we have no dental insurance.
The dynamic duo had more braces added to their already crowded mouths. I had drastically underestimated both the amount of hardware that was going to be inserted into each mouth and anguish that would result. Each boy needed a mother to himself to provide comfort and solace. I am only one woman.
I found myself stretched across two examining chairs, patting two heaving stomachs and wiping four wet cheeks with the edge of my sweatshirt, wondering whether Dr. H was judging me harshly for trying to cut mothering corners by scheduling two sons for one day rather than giving Drew and Porter each his own afternoon. As we drove home, I felt inadequate for failing to supply each twin with undivided maternal attention, but I felt even worse when I realized that I had no soup in the house and had made pork chops and corn on the cob for dinner.
It was the week for teeth. The next day I had two crowns made. I grind my teeth during times of stress, and have now had four crowns made since my mother died, even though I wear a night guard, exercise regularly, take an anti-anxiety medication, and see both a Christian counselor and a therapist. Again, no dental insurance. I urged the dentist to consider a “frequent-driller” program but he wouldn’t bite.
And speaking of the therapist, I paid him a visit.
Finn’s permanent retainer popped off one tooth and the wire pricked into his cheek until I whacked it with my cuticle scissors. It was an easy orthodontic fix, but I was a bit crotchety that he couldn’t have timed the failure a bit better to coincide with my trip to the orthodontist with the twins earlier in the week.
The next week started off in a spectacular fashion. I was teaching Finn to make Chicken Scalloppini al Fredo when an olive oil tsunami erupted as I placed a cutlet into the pan, burning my hand. The boys looked on in wonder as I writhed and “yelled cusses,” as Drew duly reported to Bill when he got home. After my pain pill took effect, I googled my injury and even the most questionable health care sites agreed that a second degree burn required medical attention, so I reluctantly saw a plastic surgeon the next day. I left $50 poorer with a wrapped left hand and a prescription for Silvadene cream.
At this point I was getting testy. My hand was sore and useless, and although the family had been trained to deal with a one-armed mom they weren’t remembering their lessons as well as I had anticipated. The bank account was suffering from co-pays and whole pays, and I’d spent countless hours both in waiting rooms and conversing with medical professionals, most of whom were perfectly nice, but I was getting way behind on my reading.
Alas and anon, the journey was not done. The next afternoon Drew came inside crying and holding his arm in a way I recognized, for it was the way I had held my arm right after I was pretending to be Anton Apollo Ono on roller blades and wiped out, breaking my wrist. Drew’s elbow was swelling, so I instructed Finn and Porter to get their homework done and took Drew to the emergency room. My attempts to comfort him were complicated by the fact that it was his left arm that was injured and my left hand that was bandaged, and so we could not hold hands at all. I had to settle for guiding him by the neck which didn’t seem so much like a consoling maneuver as a that of a guard taking his prisoner to a cell.
We passed a pleasant enough three hours at the hospital, and since I had my Silvadene with me I used some of the downtime to clean and re-dress my burn. When it was time to settle up and I was writing the $250 check I took some satisfaction from having used some of the hospital’s gauze and first aid tape to rebandage myself. It made the whole experience seem like more of a bargain.
The following day Drew and I saw an orthopedic surgeon, who confirmed his broken elbow and put him in a bright orange cast. I sent him to school with a Sharpie and he came home covered in autographs, much to his delight.
Don’t think Porter and Finn were left out of the medical excitement. Porter has a crazy contraption in his mouth designed to make him look less like a chipmunk and more like a boy, but the large springs burrow into his cheeks and create sores, which can really cause a stench if you don’t practice proper oral hygiene. Porter’s natural state is somewhere between grubby and squalid, so getting him to rinse his mouth with oral peroxide twice a day is a chore, but it is imperative. A major part of the second grade curriculum is reading aloud to the teacher and parent volunteers, and word of halitosis spreads quickly.
Meanwhile, Finn has a lymph node behind his right ear that swells up every once in a while and becomes sore to the touch. If I were the doctor I’d stick something sharp in there and see what was going on, but to date the pediatrician has chosen instead to treat him with antibiotics. I managed to take care of the latest flareup with just a phone call, and the Augmentin was waiting at CVS.
To Finn’s chagrin, it was pills, not liquid, and he began dicing each pill into into minute slivers that would slide effortlessly down his throat and into his stomach. But they didn’t slide effortlessly, and he choked them down with great drama and fake retching. As someone who swallows seven pills at a time with a single swig of tepid water morning and night, I have no patience for this nonsense, and delegated the job of ensuring the antibiotics are administered to Bill, who is the epitome of calm and tolerance, which is part of the reason I married him.
Finally, every female has womanly issues, and must visit the ob/gyn yearly, and February is my month. Because of my advancing age and my mother’s ovarian cancer, I can now look forward to a host of procedures next week: the mammogram! the pap smear! the CA-125! the ovarian ultrasound! and the always exciting and dignified exam!
So I was noting all this in the dentist’s waiting room, and came up with 11 total trips to health care professionals thus far in 2007 (the crowns took two trips) for 14 patient visits, counting my imminent meeting with the dentist and my trip to the orthopedist that afternoon to check on Drew’s elbow but not my appointment next week for my lady problems.
After an x-ray, my dentist told me I needed a root canal, which we scheduled for Tuesday, because if Finn’s ear has not responded to the antibiotics by Monday he has to see the pediatrician that day.
Barring further disasters and assuming the worst on Finn’s ear, I’ll have 14 total trips for 17 patient visits under my belt by Valentine’s Day, which averages out to a doctor visit every three days in 2007. I don’t want to tell you what the medical expenses have been. You would start sobbing if you are not already.
It’s times like these that I really miss my mom, because she would have listened to me relate all of this in excruciating detail, and then she would have told me how sorry she was, and what a great mom I am, and how I deserve stars in my crown. Later she would have shown up with some flowers from her garden.
Perhaps we’re having a run of bad luck, and the rest of the year will be healthy. Just in case, I’m writing the national Jazzercisers and asking them to ban “Freeze Frame” forever. It’s a tiny step to make life more pleasant, but at this point, every bit helps.
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.