Tuesday, July 17, 2012

Mini update

Today began with somebody wanting to do a punch biopsy on one of the lesions on the back of my right hand, which they have already scraped for pathology three times. I finally put my foot down and said I would be happy to submit but only after I understood why. I have been sitting here for almost two days now with an IV full of antibiotics and antivirals that have done nothing. The lesions have now shown up on my feet as well as my hands. They look like red dots that range from a pinprick to maybe 3mm in diameter. My beloved Dr. PZ came by. He said he concurred with RV and the folks in Arkansas that it was likely vasculitis. In his very calm way (this is, after all, the guy that said "myeloma is a malignancy of the blood" four years ago) he said that vasculitis was an autoimmune disorder that was usually treated with steroids. The pattern of lesions doesn't match viral presentation, evidently. He explained the biopsy would affirm the vasculitis if it was positive. So I submitted. As for the biopsy itself, the lidocaine shot hurt quite a bit for a few seconds, and the biopsy itself was painless. They put a couple of stitches in as with my low platelets and unpredictable healing capabilities it was bleeding pretty profusely. My question, now, is this: what else could it be, and why not treat for vasculitis at this point so I can start getting better? The treatment for vasculitis is steroids (prednisone, which is about one fifth the strength of my not-so-beloved Dex). That much I can handle. If it doesn't respond to steroids, the treatment is Cytoxan, aka Cyclophosphomide, aka the C of the VTD-PACE chemo regimen that I have already had twice. I do not want more Cytoxan. I do not want it, Sam I Am. I do not want it on a train, I do not want I on a plane. I do not want it in a house, I do not want it with a mouse. I do not want it in my arm, I am concerned that I will harm. I rather like this hair of mine, it will not help repair my spine. Etc.


  1. Nick, Hope you avoid the cytoxin and prednisone does the job.

    Thinking of you from Boston.


  2. Hope you got some answers and are on the road to recovery!

  3. Nick, Your loyal followers in New York are worried about you!! Please let us know how you are doing. As always, our thoughts are with you and hope you are on the road to recovery!!
    Pam and family

  4. Good for you for putting your foot down on random tests that may or may not be necessary and of real value. I read in Anatomy of An Illness by Norman Cousins that he put a sign on his hospital door after many days, and many more to go, that they were only allowed to come into his room between the hours of such and such and only one blood test and vitals per day. I had to laugh when I read it as I can so relate when the constant in and out at all hours to preform what are often arbitrary tests. :) Hope you do get to the bottom of it and are feeling better soon my friend. :)