By Carolyn Kaiser
As you've read in past Suddenly Senior columns, just a year ago today I was diagnosed with multiple myeloma, an incurable but treatable cancer of the blood and bones.
My oncologist told me, "Don't Google it. You'll just scare yourself."
Google it? I didn't even know how to spell it.
Carolyn Kaiser, cancer
survivor, on first anniversary
of her diagnosis
But cancer had taken my mother, my first husband, and so many others close to me that, to me, cancer was the most obscene word in our language. I had feared the disease all my life.
So of course I Googled it! And by the time Frank and I drove to the imposing Moffitt Cancer Center in Tampa this area's best hope for cancer patients we had to push through our fear and despair just to enter the building.
My hematological oncologist at Moffitt decided to do nothing. "We'll simply watch the progress for now." He put me on steroids.
After gaining 38 pounds and enduring constant pain, I returned to my original oncologist who said, "I sent you to Moffitt for a stem cell transplant. Get it done so you can get into remission and have your life back for awhile."
So I moved my case to the BMT (Bone Marrow Transplant) unit. My doctor put me on daily doses of Revlimid, chemo in pill form that effected new infections all over my body.
We told my BMT doc that, although the idea was terrifying, we wanted to proceed to a stem cell transplant.
It was terrifying because the whole idea of a stem cell transplant is to take your healthy blood producing (stem) cells from your bone marrow, freeze it, then kill your white and red blood cells along with your platelets with chemicals. This damn near kills you, too. Finally, technicians reintroduce your thawed stem cells into your body to find their way back to your bone marrow and began producing healthy blood cells.
There are two kinds of transplants used to fight multiple myeloma, either using your own or donor cells. I would be using my own. My transplant would be easier on my body, require less time in the hospital, and should show grafting within three months.
The first step was increasing stem cell production in my body.
Two months ago I entered the American Cancer Society's Hope Lodge for an eight-day stay where I was given four shots of neupergen in the stomach daily to make my bone marrow kick out more cells. Every bone and joint ached. About that time a port was installed in my left upper chest and would be used for everything from blood tests to chemo delivery.
Then I was hooked to a dialysis machine where my blood whirled around for four full days until they harvested enough stem cells to freeze.
After that I went home for three days.
On the third day home, Frank had a heart attack. In surgery for the next two days, he had four arterial blockages cleared and replaced by stents. I will be forever grateful that I was there at that time.
He'd decided not to tell me about the chest pains; he didn't want to worry me. He'd planned on stopping at his primary care doctor on the way home from leaving me at Moffitt the following day.
I frantically called Moffitt once I knew he was going to be fine, and they agreed to hold my transplant until the following day. You see, these transplants require about 50 people from numerous departments and if I could not have it done at that time would have to wait until July.
So with Frank still in the hospital and under the watchful care of several caregivers who would in time bring him to see me, a dear neighbor drove me back to Moffitt.
There, a powerful chemical poison called melphlan dripped into my bloodstream. I would receive two doses, one each day. This killed my blood cells and immune system.
After a one-day reprieve my harvested stem cells came back home. I still felt fairly well with the pain well controlled.
Couldn't See, Smell, Hear, Feel, or Talk
But the following five days were a nightmare of nausea, with transfusions of whole blood, platelets, vitamins, fluids, and medicine. Part of the time I was just plain loony from all the drugs. I had periods where I couldn't see, smell, hear, feel, or talk. The only way I could tell I was alive was that I could move.
Doctors put me on 24-hour watch. A number of lovely young ladies sat with me for several days to be sure that I didn't fall. Without platelets even a bump on the skin might cause an unstoppable hemorrhage.
At Moffitt, recovering
But each day, my blood counts went up a bit until at last I could leave the hospital. I would be going to another halfway house for another week or two until my daily treatments were complete and I was strong enough to come home.
As Frank was still very weak, we called our youngest son, Jim, in Wisconsin. He put his life on hold to take care of his mom. Big and strong, Jim and Frank moved me into a charming condo, with all the necessities.
Each morning Jim would drive me the three miles to the Moffitt Clinic. While I'd get my labs taken and any transfusions or tests needed, Jim was able to go shopping and get more sleep.
Wow, what a lovely young man. I'd give him a list, he'd drop me at Moffitt, charm the nurses, sometimes watch the labs being taken, go off to shop for the necessities, then go back to the condo for some much needed rest.
I'd call his cell when I was finished and we'd go back to the condo. Frank stayed several nights with us.
But when I made my last appearance at Moffitt for a month, said goodbye to my chest port, it was also time to say the hardest goodbye to our wonderful son, Jim. He was such a great roomie and kept me from slacking off with the "Mom, did you take your pills?" reminders. We had many a great laugh.
As I write this, I have been home for a week. I am 40 pounds lighter, still taking lots of medications. I am able to eat only a little, and my strength is very limited. But each day I feel a bit better.
Frank and I are both still weak, so it's slow as we go.
However, the sky is bluer, kisses sweeter. We are just so thankful that we survived this most traumatic experience. And in so doing we were each able, through the help and prayers of many dear friends and professionals, to gain new leases on life.
We're making every second count.
I'm gloriously bald and, you know, I kinda like it. Of course, I have blond, brunet, and red wigs, but those are only for special occasions. Most of the time I just grin and wear outlandish earrings!
Remember, life is a cabaret, old chum.