No other birthday is like today. For the last 28 years, I have been fighting, hiding, and living in fear of Social Security taking away my insurance (Medicare) while living with terminal cancer.
When I was 30 and diagnosed with breast cancer, I was a full-time student, single mom, and part-time cocktail waitress with no medical insurance. In 1995 when I was diagnosed with multiple myeloma, told 98 percent of my plasma cells were cancerous and to get my affairs in order, not having medical insurance was more serious than losing my hair and breasts. This chemo could not be donated to me, nor was any oncologist able to treat me for free as Dr. Barth had done for seven years.
Bone marrow transplants and high-dose chemo are not free in America. The total cost was about 1.5 million. In fact, America has a serious problem with medical insurance, as we all know. If you are under 65, you can only get Medicare if you are dying or permanently disabled. No insurance company would take me with my pre-existing issues, nor did I have a job or money to pay for it. I was not able to work, obviously.
After two tandem stem cell transplants, the treatment of monthly Aredia infusions for three hours, and interferon injections three times a week was my regimen. In about 2007 my doctor called and told me I could not get treatment because my insurance was canceled. It turns out that if you don't die fast enough, they take it back. My monthly treatments were very expensive.
I contacted Congressman Waxman's office and they gave me some ideas. I appealed that decision, took my Xerox-size box of medical records, and met with a judge in Korea Town to plead my case. At the end of our meeting, he shook my hand and said, "Congratulations, Ms. Parrish, you just beat Social Security. I have been paying nearly triple what most pay for Medicare, but, hey, I just wanted insurance. I believe I slipped through the cracks. But now the crack is gone. Today I am 65 and qualify for Medicare. I can now open that can of worms and try to get gap insurance.
Unless you have walked in my moccasins, as my mother used to say, you really cannot imagine what it was like. My fear of dying because of lack of medical insurance has no words, there was no time to be afraid of all the other devastating things like my esophagus lining sloughing off. I could not eat and only drank Ensure for at least a year after the last transplant. I could not walk down the stairs. My legs were like giant marshmallows.
No work. No money for rent, food, wig, scarf, you name it. I remember a nurse telling me that for the next 24 months, all I better focus on fighting for my life and nothing else. I had lost my ability to do my job, my breasts, my daughter, and all hope. The timeline is fuzzy because I am also a recovering alcoholic. I believe that God pulled me out of the gutter when I was at my lowest, on my knees begging for help, and I got sober, for the first time, in 1998 for almost eight years. Multiple myeloma went into a spontaneous remission that no doctor had ever seen before at nine months sober. But the treatments continued until my femur spontaneously broke in 2006 from Zometa (biphosphonates) - Multiple myeloma returned in 2018. The wild ride never stops.
As many of my friends know, after getting sober in 1998 in Newport Beach, I joined a spin class. It took me several months to complete a class. I stayed in the back so others did not see me stop pedaling and start crying. That led to my first 100-mile bike ride in Santa Barbara, followed by many century bike rides. Then I got a mountain bike and found my happy place. I started racing (or trying my best) -
I called my little brother this morning. He was transferred by the Marine Corp to take care of me and my daughter in 1995. Bless his heart, he went through that living hell with me. He was watching his sister die. He slept on the couch for years. He changed my clothes, and my chemo bag, and took care of Danielle. God bless the Marines! My daughter was watching her mother dying and drinking. I was pathetic. Her story is another book.
I asked him this morning if he thought I would make it back then. He replied with a big "NO" - He was making my funeral arrangements. He told me that the doctors certainly did not expect me to "make it". The labs were not what they hoped to give me more time. Dr. Vandermolen told me it might have worked better if my liver enzymes were not totally off the scale the whole time.
If you read this far, thank you. I am exhausted and I apologize if this makes no sense. My story is not easy to tell. My utter shock at the fact I made it this far is off the charts. Happy is a small, but mighty word for me today. I found God. I found hope. I found friends. My clients came back. I started rebuilding my business and my sober life by being of service to my fellows.
