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.

Venting

Arrrgggghhhh…

I sent a message (via MyChart) to Dr.Seropian’s office early Friday morning to start the process to schedule my consolidation chemotherapy treatment. I knew I wouldn’t be able to start this week, but figured next week would not be a problem. I also called to cover my bases. I received a call back from someone in the office who said they would call me as soon as they figured out the best time for me to be seen. Fine.

End of the day Friday, nothing.

And then the long weekend. And yesterday (Tuesday) I’m back to work and although I had a dream Monday night that they couldn’t see me until November (love those anxiety riddled dreams) I forgot about it until 5:00 p.m. when I realized I hadn’t heard anything. I called, even though it was after hours, so I cold at least leave a message. I spoke to someone in the office who said she would get the message to someone right away and they would get back to me as soon as possible. I thanked her and even said I didn’t expect a call back that day and tomorrow would be fine.

I just realized it is 10:00 – and still nothing 😦

Just sent another message (the nurse who responds to the messages is very efficient and quick to respond, although she is not the one who schedules).

When the medical system causes more stress than the disease and the treatment – there is something wrong with the system.

Day +11

I’m coming home tomorrow (Sunday)!

My WBC count multiplied by 6 up to 1.45. And my absolute neutrophil count (ANC) which had been non-existent and needed to be 500 for me to leave was 1200 this morning!

There is a little bit of a glitch with my home medications but everyone here is doing everything they can to work it out. 

I just had another reiki session and I’m waiting on the arrival of my mom and my brother for their visit. Scot comes tomorrow morning to take me home two days early!!

I am also anxiously awaiting the Hickman line removal. 

I have some more “training” to do before I can leave. It is a tiny bit frustrating because there are some inconsistencies between sources of information in regard to the long list of limitations I will have for the next 30 and also the next 90 days. But never fear I will get it all sorted out, with the assistance and of course the nagging of my great care team at home.