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.

Work, treatment, photography

So those are my reasons for not blogging. Or to clarify, I think it is a combination of the three: back to work in the office full-time, getting the consolidation treatment, and the prime season for my photography schedule – have all kept me from sitting at the computer and blogging. I’ve been tired, and any free time sitting at the computer at home, I should be editing photos.

Work has been good, you know, it’s work. It’s good to be back and seeing everyone on a daily basis, interacting with friends and colleagues (sometimes, every once in a while, they are both!). Everyone has been very gracious and kind. Examples of which are the in the photo above. Those are three “gifts” given to me in my first week back at the office.

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The first one, the mini blueberry muffins, are from someone I know very casually at work. We say “hi” when we pass in the hall or the break room, a nice guy, but a co-worker, not a friend. The day after I came back he swung by my office and quickly dropped the package on my desk and said “welcome back”. So sweet.

The flowers are from someone who has only worked here for about a year, we have worked on some projects together. A colleague.

The last item is from a friend, and also a colleague, someone I sometimes refer to as my “rabbi”. While I was out she had traveled to South Korea to visit her son and his young family., And while there she had this name stamp/talisman made for me, with my name (or the closest approximation, I think they do not have the “th” sound) with a healing message on it.

All of them, so kind and conpletely unexpected.

On Saturday night I finished the last of the “consolidation” treatment. My white blood count took a bit of a hit over the course of the two cycles. I had to get a neupogen shot at one point and then when it went down again they cut my dose of revlimid in half for the last week.

I’ve been tired. Sometimes very tired. With a few nights of very little sleep from the decadron. And the neuropathy in my feet has worsened, and I sometimes feel like I am starting to have a little bit of tingling in my fingers, this is from the velcade. It is the same treatment I had last January through March, but it seemed a little bit harder. Maybe it’s coming off the stem cell transplant. Maybe I baby-ed myself more last time. Maybe I don’t remember what it was like. Maybe I’m just getting old!

Well, it might also be the photography. I have not done as many shoots as I did last year. But I still have been doing 2-3 per weekend. So it is hours of driving, hours of shooting and hours and hours of editing. I’m looking forward to “the season” being over. But then again, I’m always looking forward to the photography season being over.

Next Thursday Lisa and I are off to Dana Farber for a follow-up visit with Dr. Munshi. I anticipate that he will firm up his plans for my maintenance therapy. I have already scheduled an appointment at Smilow with Dr. Seropian and a treatment appointment for the following week so hopefully ti will all go smoothly on this end.

And I am also hopeful that the maintenance therapy will not be too onerous. we shall see.