Monday, January 4, 2010

Partially Unleashed

This morning, after getting blood taken for testing for the umpteenth time, my catheter was removed. All I have to show for it now is a dressing that will be removed in a few days. The procedure was substantially less involved than was the installation: basically a firm tug, and it was all over.

I'm not exactly sure what life is going to be like for me in the short term, once we have returned to Avondale on Thursday. The materials I have been given so far touch on the following points:

I'm expected to visit the Christiana oncologist once a week for the first month, then biweekly for the next couple of months, then once a month going forward. He is supposed to apply more or less the same tests that I have been getting in the IPOP clinic, and topping me up with electrolytes and/or blood as required. I'll be getting deeper tests (bone marrow aspirates, X-rays, CT scans) on my return visits to Hopkins (60 days, 6 months, 12 months).

Even though my counts are back to normal, my immune system will not
really be completely restored for another 6 to 12 months. I will continue to be vulnerable to certain types of infections. I will continue to need to wear N95 respirator masks in certain situations. Crowded places will be particularly problematic; I will have to regard airline travel with grave suspicion.

My childhood immunizations have been eliminated and will require restoration. My immune system won't be ready to begin the process for another year, though, and I won't be able to get any live vaccines for two years. I will be particularly vulnerable to VZV (Chicken Pox / Shingles); I will have a 40% chance of getting a VZV-related illness at some point.

I am likely to continue to struggle with fatigue for another year. Progress will not be monotonic; I will have bad days following good days.


  1. Hello Mark - I thought the New Year would be a good time to let you know that your spirit and stalwart approach, at least as they come through in your blog, are an inspiration to me. There is no doubt in my mind that your attitude and your intellect are a huge assets in your recovery.

    We would very much like to visit with you when you're able to receive outsiders. Peace & love to you my friend, Deb Shaw

  2. Hi Mark,
    (Not sure whether you check your work email so writing here)

    Happy New Year!

    Great to read about your recovery. As I've said before, your positive spirit and strength comes across in your posts and truly amazes me. Good luck and best wishes for a healthy year and may you have many, many more good days than bad ones :)