Moffitt Official Diagnosis

I set up an appointment with Moffitt.  It was the day after Charlotte’s 5th birthday. This would be my initial diagnosis appointment.  The only hope I was still holding onto was that maybe it was smoldering multiple myeloma which is much easier to control and comes with a much longer life expectancy.  The day of the Moffitt appointment, I had to go in alone.  No visitors were allowed due to Covid.  Chris was going to drop me off and then my parents and Chris would be part of the meeting via speaker phone.  I remember pulling up to the building and crying when I saw the big word “Cancer” on the front.  None of it felt real.  I was sick to my stomach.  I felt detached from everything happening.  I went into the room.  There was a leaky faucet dripping.  I was in there for 45 minutes before the doctor and his assistant came in. He explained I did have multiple myeloma.  I asked if it was still smoldering and he told me unfortunately, it was not.  I had very active disease and would need to go undergo treatment immediately.  He went on to say the life expectancy was around 8 years. People can go into remission, but unlike other cancers, it always comes back and the patient eventually will succumb to the disease. This is what makes it a terminal cancer.  I lost it.  I cried and sobbed and I honestly don’t remember much else from the 2 hour and 15 minute appointment.  Thank goodness my dad took detailed and thorough notes.  Only my dad could keep it together and remain calm and rational during the most difficult situation of HIS life.  The doctor shared some of my results from the scans.  There were lesions everywhere, across my whole skeleton.  There was so much damage. My PET scan lit up like a Christmas tree.  They were still waiting on some of the genetic testing.  There was some talk about putting a rod in my arm as the bones were so destroyed.  I can’t even express the level of sadness I experienced.  I slept all day if I could.  I didn’t want to be awake.  I didn’t want to eat.  I tried to be around the girls but I couldn’t.  I couldn’t be around the girls for more than 10 minutes at a time without losing it and retreating back to my bedroom.  It was horrible.  I spent way too much time in my dark room in bed.  My mom would plead with me to eat, come out of my room.  But I couldn’t. When I wasn’t sleeping,  I spent more time researching, wondering what I was going to do.  In my research, I found UAMS.  They were located in Arkansas.  They had great survival rates.  They did aggressive treatment and were highly recommended.  The more I read, the more appealing it became.  I was young and otherwise healthy.  I wanted the most aggressive treatment available and it seemed they were one of the only facilities in the country still performing back to back tandem transplants.  I knew it would be a stretch but made the call to see if my insurance would cover treatment there. They returned the call about a week later.  They said they had worked it out with insurance and I could come there.  It was the first glimmer of hope I had in a while.