Why the words are so important

I had my appointment at Dana Farber this past Thursday. And I waited to post about it until I had time to listen to my recording of it. I knew it was positive. There were lots of “yays” and even hugs at the end. So when I was asked how it went I would say “it went well”. But with cancer, at least with my cancer, I am relying on numbers and then how those numbers are translated into words to know how I am doing. Because aside from effects of the numerous treatments I have had, I have no symptoms of my cancer.

So this morning I listened to the recording and wrote down some of the words.

  • With myeloma at this low level
  • Light chains are great
  • IgG is normal
  • Standard maintenance therapy is revlimid 3 weeks on and one week off, because of your genetics (this is the genetics of my multiple myeloma) we will also do velcade every other week
  • Shouldn’t cause more neuropathy
  • Side effects pretty minimal
  • The transplant achieved what we were hoping
  • Free light chains came down quite dramatically 400-500 to 20
  • Come back every 4 months then stretch it even beyond that
  • We are on cruise control now
  • Your myeloma is going to be gone. It’s almost pretty much gone. This (maintenance therapy) is to keep it away for years and years.
  • Your immune system is actually better than it was because the myeloma is not affecting it.

So there you have it, lots of positive words, along with “yays”, smiling faces, joking around and hugs.

I don’t know why, but I remain pretty neutral, not pessimistic, but not even cautiously optimistic. I feel like I’m from Missouri – show me. Show me I’m still cruising along a year from now, 2 years from now.

I guess, I don’t want to get too high, it makes the lows feel that much steeper.