More Bad News

It was my second meeting with Moffitt.  My genetic testing was back.  I had 1q gain, 1p loss, and 13 deletion.  If you have any one of the genetic abnormalities, you are categorized as high risk.  I had 3.  Only 15% of all myeloma patients are high risk at diagnosis. Guess what? I fell into that very rare 15%.  High risk patients have much poorer survival rates, are typically harder to treat, and relapse faster.  Remember when I lost my mind thinking I had only 8 years left to live?  Well now I was being told to expect 2-3 more years, max.  My doctor at Moffitt told me it was “highly unlikely” that I would make it to 5 years post diagnosis.  I was at the point now where I really just didn’t know how much more I could take.  It was now literally a death sentence.  I would be dead by the time Hayden went to Kindergarten. She wouldn’t even remember who I was. I went though the whole grieving process again, this time with even more events I would never get to see.  I told my doctor at Moffitt I was considering getting treatment at UAMS.  He discouraged me from going there.  “They are entirely too aggressive” he stated.  “You will lose your quality of life.”  He warned me the treatment there is so toxic and so aggressive that I could end up in a wheelchair the rest of my life.  He warned of other major side effects that could result from tandem transplants.  I politely listened to what he had to say, but ultimately my mind was already made up.  I was given 2-3 more years and I was willing to go through anything and everything to get any more time I could.