Like all stories, this one has a beginning, middle and end. I will start at the beginning.
Four years ago my husband lost his job unexpectedly. After five months he was forced to work in Florida. I stayed here because our house was so underwater. For two years he lived in Florida and I split my time between Florida and Texas.
At the end of two years he wanted to come back so he arranged to work from home. For the next 19 months he worked from home. February 1, 2013 he was fired for costing the company too much money. Their insurance is self pay so they pay directly for all medical visits etc. Excuse given was that he was no longer needed. They were forced to hire someone else to do what he did. We were blackmailed into signing a severance agreement. I am waiting on EEOC for help, hopefully....
My husband started to have health issues January 2012. He broke out in fungus rashes and shingles. Took four months for them to clear. He caught a cold in February 2012 which took nine months to get rid of. He took four sets of antibiotics and steroids to no avail. What finally cured it was the netty pot. He rinsed all the bad stuff out. He had lost his sense of taste and lost over 40 pounds in 11 months. Not a good way to diet.....
He was hospitalized in July 2012 due to the inability to pee. A catherter was incorrectly placed in his prostate and inflated. This led to four days of bleeding in the hospital. His platelets were in the low 20's. He had his first bone marrow biopsy while in the hospital. We did not find out until July of 2013 that steroids can cause this condition because it triggers BK syndrome.
His first oncologist told him it was Chronic myelomonocytic leukemia (CMML), a very rare blood disease that affects 1 in 100,000. It has only been classified since 2001. It was obvious the oncologist was not sure how to treat it.
We got a second opinion from Harold C Simmons Cancer Center. As much as we hoped this diagnosis was not true, it was confirmed.... Thus began our nightmare.
CMML destroys the bone marrow and causes it to produce junk and reduce the counts. He had a moderate case. The only real cure is a Stem Cell Transplant (SCT). This disease is normally not diagnosed til patients are in their 70's and too old for one. We were lucky that he was diagnosed at 65. He has five years before he is too old for a transplant. He will eventually get a Reduced Intensity Stem Cell Transplant.
Because this disease can morph into a more deadly Leukemia, we decided to start treatment in late November of 2012 with Vidaza, a reduced intensity chemotherapy. We opted for injection. We do 7 days on and three weeks off.
This worked until May 2013. In his third week of the cycle his platelet count bottomed out. He had two bone marrow biopsies within two weeks. They showed that he was holding his own and slowly improving,
A malformed chromosome was found in all three BMB's. It was determined that this did not cause his cancer. It was a genetic defect.
More later.......
