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Tuesday, June 23, 2015

Visit 36

At my monthly Farber visit yesterday I began the 36th month on my Revlimid clinical trial maintenance protocol.  Fortunately, things are still going well.  The X-Ray skeletal survey I had last month showed no change from last year, which is great.!  All my other tests are still good.  I almost feel guilty saying that, since there are so many MM patients dealing with difficult issues on a daily basis.  I know this could be the calm before the storm, and that any time, the torrent could be unleashed.  I'm just very grateful.

The 3-year maintenance clinical trial I'm on runs out next month.  Originally, it was planned that everyone would go off the Rev at that point and just wait until a relapse.  I have done research (surprise) and I know that there is a follow-on clinical trial that will pick up at the end of this trial and continue it for another 3 years.  However, nobody at the Farber seemed to know any details about this.  Unfortunately, my favorite nurse, Muriel, who handled all of the clinical trial details, retired last month.  I'm really happy for her, but she will be sorely missed by all of us.

Her replacement, Kristen, seems great, but when I asked her yesterday about the follow-on trial, she wasn't aware of it.  I showed her the paperwork which requires me to sign another consent form before continuing with the new trial.  My concern was that unless I dealt with this, I might not get my next month's supply of Revlimid before we head off to Peru on July 21.  Anyway, Kristen looked into it and emailed me today to say that they will continue to supply the Rev and I can sign the consent form next month.  Problem resolved! Although maybe the problem was all of my own making.  If I had simply done nothing, it may have worked out just fine.  But I'd like to think that I saved the day.  Humor me, please.

While there, I got the last of the childhood immunization vaccines that I needed since my ASCT.  It was the Zoster vaccine for shingles, which is a live vaccine.  They have been saving all the live vaccines for the end, because my immune system is still somewhat suppressed.  I am now fully functional as a vaccinated adult.

Good thing, because, today, Gretchen and I went to the Lahey travel clinic to get our immunizations shots for our trip to Peru.  That was a laugh and a half!  Let me put the record straight...there are no required immunizations to visit Peru.  The only one that is highly recommended by the CDC is the yellow fever shot.  That's the one I most wanted to get.

However, when we got there, our nurse practitioner barraged us with a panoply of impressive maladies that could befall us on our trip.  If we had visited her before we made our reservations, we might have had our reservations (so to speak).  If one is visiting Machu Picchu and the rain forest, as we are planning, there are a plethora of possible concerns, including yellow fever, typhoid, Hepatitis A, Hepatitis B, malaria, tetanus, altitude sickness, diarrhea, and rabies, not to mention dengue fever and some kind of monkey fever.   Why would anyone ever want to go to Peru? You might never come back alive!

Anyway, Gretchen ended up with 5 shots and 3 prescriptions.  I think she's in good shape.  However, the NP didn't want to give me the yellow fever shot, the only one I really wanted!  She felt that with my chemo and my age, the shot was "contraindicated".  Bullshit!  Anyway, I emailed Dr. Richardson to get his opinion, and he responded that he thought it was OK, but he cc'd it to his staff to confirm.  That wasn't enough for her, who wanted more affirmative approval from the Farber.  There wasn't enough time to get a response from the infectious disease staff today.  I almost insisted on getting the shot anyway over her objections, but I relented and said I'd come back another time.  I ended up with  2 shots (Hep A and typhoid) and the 3 prescriptions (malaria, altitude, and diarrhea).  The only shot I didn't get was the yellow fever!  Go figure.  I'll probably end up getting dengue fever anyway.  There's no vaccine for that.

On another note, I began volunteering last week for Habitat for Humanity.  They are converting an old convent in Lawrence, MA into 10 condo units.  This project has been going on for a couple of years now, but it is supposed to be completed this fall.  My first project was to help install a floating laminate floor in one of the units.  Here's a picture of the results of my first morning's work with Dan, who taught me a lot.  I'm excited to be back doing volunteer work and contributing back to the community.  I plan to volunteer once a week.  Since I also like building projects, this should be a rewarding experience for me.  The guys I have met so far are great, and it doesn't suck that they usually go down to a local Irish pub for a beer after work.  Now I could really get in to all of this!

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