Monday, September 7, 2009

An insomniac's thoughts on the Indian subcontinent

Can't sleep. Not sure why. Part of it is pain from the shingles, which though getting better is still troublesome. Part of it is wanting to get the results of the blood tests back on Tuesday -- if it's zero, it means I'm almost certainly in complete remission. If it's not, it's a bad thing.

At any rate, can't sleep.

I received an email from a friend of mine with whom I used to work, who now does charitable work for the Gates foundation in India (she is, herself, Indian). It was great to hear from her (hi there, AR, now reading along!)

I also received an email from a fellow MM traveler, also initialed AR oddly enough although she is from Jersey, not Mumbai! :) In our back-and-forth the concept of Valtrex (a vaccine for shingles) as a prophylactic came up. My dear mother, bless her heart, keeps insisting that I get this (it's routine for people over 60) but doesn't quite grasp that it's a live vaccine and my system can't handle it.

Between these two seemingly unrelated contacts, I started thinking about how MM patients that have gone through SCT cannot tolerate live vaccines. The list of live vaccines could include those famous shots that people need before traveling to India or Africa. So I may not be going anywhere all that exotic. I wonder how this might impact my career?

In any case, I think I need to learn more about the whole vaccination thing. When I do my consult at City of Hope for this stupid portacath, I will try to also get in to see Dr. SF to discuss vaccination theory, antibodies in a post SCT immune system, whether I'm really susceptible to everything again, etc.

Always something more to learn -- and that applies much more broadly than MM, of course.

Did I mention that I'm having a breakfast meeting in a couple of weeks with Kathy Giusti of the MMRF? I've spoken with her on the phone in the past, and I'm really looking forward to finally meeting her. I hope to try to give something back by volunteering some time as a board member if they have a use for me. We shall see.


  1. Congrats on the Marvel deal! Although you weren't there for the close, I'm sure you put many long hours and lots of hard work into it, and I'm sure much of the credit belongs to you.

  2. Nick,
    There's no denying this MM is a b#@% to deal with and in my view (after 4.5 years of this) it's OK to vent and rant once in awhile. So let it out my friend and know that you have many supporters in this world who will listen and support you through it all. And despite all your worries, know that you will still find much joy and laughter in this life and that you will have a long life. Given the state of research in MM I truly believe that people with more recent diagnoses, like you, will live complete and full lives. And I pray for that for you and your family.

    And now for some detailed comments. I spoke with BB last year about the shingles vaccine and you should, too. As I recall he questions its efficacy and recommended against it.

    You described the consequences of the height loss perfectly (I know, I lost 4 inches and experienced the midsection bulge). I'm confident that once this is fully behind you, you will be able to laugh at it, as we do in our family. No question that our egos get beat up badly with MM.

    You might look into acupuncture for the shingles, if you can get over the needles. I had a friend who got some pain relief that way.

    I applaud your efforts to get on the board of MMF. I have been on the executive committee for the Colorado chapter of the Leukemia and Lymphoma Society's Light the Night Walk for the past 3 years and have found it very rewarding. Those people are working so hard to find a cure for us.

    Keep the chin up my friend, you're through the worst of it. Best wishes to you and your family.