It is rare adult who has not been touched by cancer, either by having it your self or helping a friend deal with it. Recently I wondered if it were in my future. Each time someone mentioned the “C” word I cavalierly said, “No chemo/radiation for me. I’ll die first.” Would my decision be put to the test?
For the last decade my energy levels have waned. About once or twice a week, I could do as much housework, yard work, or dog training as I wanted, only to pay for it the following day. For years I felt lazy and depressed about not being able to keep up with friends. Finally, around 2005, I went to several doctors to be tested. The results were negative for liver problems, AIDS (thank goodness), heart problems or tumors. One thousand of the County’s health insurance dollars later, my doctor simply diagnosed me as being an “enigma”. I had already been diagnosed as “getting older” and “being exhausted all the time is normal” for my age. My Epstein Barr levels were out of sight but that is a yuppie disease and no doctor wants to pursue autoimmune problems.
But blood work doesn’t lie. In 1996 I found the well known Naturopath, Dr. Bob Sklovsky, in Milwaukie, Oregon who to this day still has a weekly radio program while working part time at his office helping well known clients as well as housewives, seniors and children. He found my thyroid problem in 1996 when other doctors didn’t. The annual lab work I do for him started to show my white blood cell levels going lower and finally, after nearly a decade, Dr. “Bob” called me from Oregon to Florida to tell me I MUST get this diagnosed. My health insurance is now out of pocket and I really don’t want to deal with old age and yuppie diagnoses on my dime. My insurance company’s free nurse health line suggested I go to an oncologist, someone they suggested I could find online on their website, Blue Cross, Blue Shield. While at the West Florida Hospital in Pensacola for a regular doctor appointment for my mother, I asked where a particular doctor was located. They pointed across the street to the Sacred Heart Cancer Center. Gulp! Do I really want to know if I have cancer? Isn’t ignorance bliss? I’ll just fall asleep one day of exhaustion and never wake up? Dr Bob wasn’t going to take no for an answer after seeing my numbers decline. While talking to the receptionist at the Cancer Center one day I heard her say to someone that my diagnosis is leucopenia. Saying the word over and over I raced outside and googled the word on my Blackberry. It is just a fancy word for low white blood cell count. Phew.
Six long weeks later I had an appointment with an Oncologist who was all business, no socializing, no small talk. He wanted three tests done: bloodwork, an ultrasound of my liver, spleen and kidneys and a bone marrow biopsy. The bone marrow creates white blood cells, the spleen destroys the excess and the blood test may show an autoimmune problem. We could be back to the yuppie disease.
Never ask friends about their experience with a bone marrow biopsy. Everyone says they are extremely painful. Like giving childbirth? Like being run over? Like being bitten by a rattle snake? It only takes twenty minutes. How much pain can they inflict in that short period of time? But the biopsy was relatively painless although the doctor asked before starting if I’d seen the You Tube video of a man screaming in pain during a biopsy. Thankfully I didn’t search You Tube for medical procedures. Is nothing sacred? Who filmed the biopsy? His wife? It serves him right since he probably took videos of her giving birth to their children. Payback. But the really painful part for me was waiting another seven days for the final diagnosis, which will be followed by months of insurance bills.
I’ve had moments of being terrified. Then again, what is so bad about knowing the end is near? There is that cruise I want to take, another trip across country in a rental car, maybe a trip to Hawaii. I’d still like to sew again, make more jewelry, read more books. What worries me is the controversy over turning down chemo and radiation. That is a personal decision which should be respected by friends, family and especially doctors. Cancer treatment is big business. The cure is out there but it won’t be found as long as there is money to be made in the treatments. Sorry but that is my belief. If this is my time I’m ready to go, my mental bags are packed and I’m going to have fun up until the end. My dogs will be with me since I’ll probably be in the Utility ring trying to get that last UD leg.
The big diagnosis day arrived. At the Cancer Center the doctor came into the room and was all smiles and told me to stand up and look at the reports. Everything came back fine-almost. He immediately said I don’t have leukemia. Apparently we both were thinking of the same diagnosis. But the bone marrow biopsy shows my bone isn’t making enough white blood cells “for my age”. The doctor said he wants to retest me in three months at which time he is thinking about putting me on Vidaza. He gave me a booklet to review about the drug and to please leave the booklet in his office when I left, which I did not. If I’m going to take a drug I want to know all about it. And I’m glad I brought the information home. If you want to scare yourself look up drug information on the Internet. Vidaza is a CHEMO drug used for people with MDS, myelodysplastic syndrome, a disease with no cure. But wait. Why didn’t the doc say I had MDS (which was initially called the “pre-Leukemia” disease)? If I don’t have cancer why would I take a chemo drug? Now I have more questions than answers. The drug only has a 16% response rate and the adverse reaction list fills an entire page. There is no word on the expense, naturally. Oh, well, no use scaring myself. There are dogs to be trained, dog show entry forms to fill out and warm Florida beaches to walk. C’est La Vie.