Monday, June 13, 2011

Backstory: I'm a Survivor of Everything from Cancer to Paralysis to Hospital Roommates

To say I’m a cancer survivor isn’t enough. I’m a survivor of many things, all of which happened over the last six years.
Before then, I was a veteran journalist, a wife and mother of three, a Northern California native and Arizona resident who had moved to Southern California because my husband changed jobs. It was a good move, I repeatedly told my heartbroken teenagers, because we can keep our old friends and visit our beloved family in Arizona and Northern California while making new friends and learning new things in an exciting,  vibrant locale. 
I was at a proud place in my career. After decades in the newspaper business and freelance world, I had recently won national awards and the top award in Arizona journalism. When we relocated to California, I planned to resume my freelance writing once I got my boxes unpacked, the kids settled and my computer up and running.
Then, at age 48, I got sick. 
Doctors couldn’t figure out what was wrong with me. I had severe vertigo, a high fever for two months and drenching night sweats. I was unintentionally losing weight (which the old me would have loved) and was getting increasingly pale, weak and anemic.  I would lie down and take a nap after walking down the stairs from my bedroom to the family room.
Over the ensuing months, my legs quit working. Just like that. My ability to speak or see would at times just be gone, then come back.  Then I permanently lost the vision in one eye. I fell three times and suffered more than a dozen excruciating compression fractures in my back. I had every test and scan you can imagine. Multiple times.
A brain biopsy finally yielded lymphoma cancer cells. Doctors believed it was CNS lymphoma, affecting my central nervous system. (Later they determined it was diffuse large cell-B vascular lymphoma, one of a myriad of types.)
I was confined for  4 1/2 months in a hospital bed. I was paraplegic, couldn’t move a muscle from the waist down. I spent time in three hospitals and three rehabilitation centers, including one I believe was the best possible rehab place and one close to the worst.
At times I spoke in tongues, ripped out my intravenous line, was shackled to my hospital bed, had both an oxygen mask over my mouth and a feeding tube through my nose.
My lymphoma -- a rare type that does not show up on any scans -- was head to toe, but much of it was in my brain. Massive doses of chemotherapy for 15 months seemed to clear it up. But a year later, it returned.
I descended into hell again after my oncologist told me a stem cell transplant (also known as a bone marrow transplant) was my only option. I had that nearly three years ago and so far, so good.
So I am not just a cancer survivor, I’m also a survivor of a stem cell transplant that brought me back to and from the brink of death, massive quantities of steroids, severe steroid side-effects including osteoporosis and cataracts, total body irradiation, many surgeries, spinal taps, too many MRIs to count.
I’ve survived depressing paralysis, grueling physical therapy and terrifying drug-induced hallucinations.
I’ve had good and bad nurses, some of the best doctors on earth and a few who were far from that. I had a paid in-home caregiver whom I adored and a revolving door of visiting nurses who came to my house to give me shots or IV infusions.
I have seen my husband, children, friends and relatives bravely take on the sudden roles of caregivers and perform admirably.
I lived feet away from dozens of roommates in hospital- or rehab- rooms. Most were OK, a few were wonderful and some were downright rude and creepy. I’ve sampled hospital and nursing home food, tried out various wheelchairs, walkers and canes and visited countless number of accessible bathrooms.
Today I am able to do a lot of the things I used to do, albeit with planning and patience. I can drive, shop, cook, care for my family, visit with friends, dine out, and attend my beloved book club. I can go to the movies, concerts and plays. I can visit the beach. I’ve mastered the art of dancing while holding onto a walker. I attend a fabulous exercise class for “50 plus adults” at the local senior center.
When people see me with my walker, some give me a compassionate look. Several  will say, “You’re so young! What happened?”
I give them the short version. “I had cancer and part of it was in my brain.” 
Others -- a lot of them -- say, “Did you have hip surgery?”
To which I respond: “I  wish.”

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