Two Strikes at Once

Last updated: February 2020

I'm 56, disabled, but still here. At 49 I was having terrible headaches, so bad I went to my primary, crying, telling her she has to do something. After taking blood, I finally got some pain meds via injection. Days later I found my platelets were extremely high, made it up to 904,000 at one point. I have a little bit of medical background, so I started researching what causes the elevated platelets. Discovered it was myelofibrosis, which was confirmed via bone marrow biopsy. Not fun...

Seeking a second opinon

I then went to Dana-Farber in Boston, for my second opinion. They took 13 vials of blood! And verified the first diagnosis. I had two doctors, both Phd's, working on my condition. They said I had about 8-10 years. But not long after this, via PET scan and needle biopsy, I was additionally diagnosed with Non-Hodgkin lymphoma. I had two large tumors against my patriotic aorta. (Mid abdomen, against the largest blood vessel you have). After much debate and research, I went through a round of chemo: Rituxan. No changes. So then another series of chemo treatments of Rituxan and Bendimustine. That I felt!

Misdiagnosed

I was tired all the time, slept, had to really pull it together to take the dog out. I was taking over 60 pills a day. And... another doctor misdiagnosed me with psoriatic arthritis. She treated me with meds for months before another doctor said, "wrong, you dont have psoriatic arthritis ". I dont know if I was relieved or mad. Being treated with meds you dont need is not good.

So now, 8 years from original diagnosis, I'm getting more tired, sleep alot, take 25 pills a day, and am in limbo. Not exactly sure where I stand, or what's happening with me. I see my MD in two weeks. Might push for another bone marrow biopsy then.

More to follow....

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