On February 23, my wife Sarah got sick on the way to school, sick enough that we had to pull over to the side of the interstate. But after a few minutes she was felling better and insisted that we go on. In 22 years of teaching, she'd only missed two days. It would take a lot to stop her.
So when she called me an hour later and asked me to come and get her, I was worried. When the school nurse called a few minutes after that to say she had called for an ambulance and I needed to meet Sarah at the hospital, I was pretty close to panic.
As it turns out, panic was the right response. The world had already changed. I just didn't know it yet.
The truth was, Sarah had been feeling under the weather for months. Back over the summer, she had suffered from insomnia and exhaustion. The insomnia got bad enough that we went in for an overnight sleep study, but it turned up nothing, and the doctor pinned Sarah's problem on a simple cause: she was closing in on 50. The restlessness and the hot flashes that woke her at night, could all be blamed on the beginnings of menopause.
In the fall, she combined that she was having trouble keeping up her running pace. She had always been the healthy one in the family, regularly pulling off 20 miles, and news that she had dropped back from 8 minute to 10 minute miles didn't seem all that surprising. After all, 50. Menopause. All that jazz. And hey, it was a lot more running than I could manage.
Finally, just a week before the day she got sick, Sarah had complained a backache. We even made a trip to the clinic so she could have an x-ray. Again, the doctor saw nothing, and suggested that it was probably a touch of arthritis. After all, she had just turned 50. The doc said she was fine, and we believed it.
That morning she was pulled into the hospital, it was actually the paramedic who caught the critical clue. Reduced breath sounds on the left side. Later that night, I sat by her bedside and watched as a doctor pushed an enormous needle into her back and quickly drew two liters of fluid from her collapsed right lung. As he was leaving the room, he was the first to say the words "it's probably a tumor."
It was a tumor, one roughly the size and shape of a liter soda bottle, crunched in behind her sternum and pressing against both her heart and lungs. On the PET scan, it glowed like a light bulb in her chest -- along with golf ball-sized tumors near her neck.
It took two more days before we got a rough diagnosis as a non-Hodgkins lymphoma. It took another week, and a second oncologist, before we got a definitive diagnosis as Primary Mediastinal B-Cell Lymphoma.
PMBCL is a lymphoma that primarily strikes young people in their twenties and thirties. Mostly it hits young women. Sarah was at the upper limits of age for cases of this cancer (as she said, "all that running and watching my diet just got me kid's cancer.").
For the next six months, we got an education. we learned that cancer is just as horrible as it's made out to be, that chemotherapy is even worse than you think, and that anytime you think it can't get worse, it can.
Sarah's treatment, DA-EPOCH-R, involved five days of continous infusion each cycle, during which she received more than two gallons of highly toxic fluids. She also swallowed enough steroids each cycle to sustain a football team and the Tour de France, running her blood pressure up beyond 230 and her heart rate far beyond what she usually experienced while running. Each cycle was topped off by $6000-a-shot injections that made her bones hurt so badly she could barely walk. We learned just how achy, nauseous, exhausted, and battered a person in chemotherapy can be.
However, we also learned that the right doctor can more than double the odds of survival, that new drugs, combinations of drugs, and ways of administering drugs mean that forms of cancer that took a 60% toll just ten years ago, take less than 10% today, and that trite as it sounds GO GET A DAMN SECOND OPINION no matter what the issue. Do not Google your disease and think that it's hopeless. I can't tell you how many times we were brought to despair by reading old medical journals and running into numbers that made it seem like a foregone conclusion.
If you're facing something like this, realize that things are changing rapidly, and even good medical journals are showing you results from the treatments that are now out of date. Go to a specialist. Get a good oncologist who knows the type of cancer you are facing and the latest treatments. If you have to, get into a trial -- Sarah was in two trials at once. If we had gone with the oncologist the hospital had assigned and the treatment he prescribed, I could be writing a very different message today.
Know what? That godawful treatment was totally worth it. Those tumors that burned so bright in the first PET scan were only tiny dark lumps in the latest. We are at the lake today. This morning we took a paddleboat ride past the cabins and old docks while the rising sun rippled across the water and huge old fish stirred the surface of the lake. We'll do it again next week. And next year. Sarah is going to be OK. She is officially in remission and, we hope, on her way to being simply cured.
Now, go take care of yourself.
Unending thanks to Dr. Nina Wagner-Johnston at Siteman Cancer Center in St. Louis, who steered us through a rocky course with sympathy, a firm hand, and a roll of the eyes for the latest ludicrous concern I'd dug up on the net. Thank you, Nina.