Update Time. Not So Great.

I have promised to keep this up to date.

We have always known that the gap between the curves in which I live would narrow step by step.  This seems to be one of those narrowing moments.

I am definitely now consuming red cells at twice the prior rate, that is now about 2 units a week.

My spleen is significantly enlarged, and it is likely that my spleen is chewing up red cells on its own.  This makes transfusions less useful, which in turn means that we can not get my red cell count as high as I would like.

I have completed the first set of Revlimid.  It made me somewhat befuddled, and I got the classic rash.  Now in the 7 days off end of the first cycle.  The rash is virtually gone.

However, we are exploring an alternative drug that should shrink my spleen.  This might be more appropriate at this stage.  I am also glad that I have a new good GI doctor.

So, how do I feel? Well, this is a different stage, and my job now is to find things to do that keep me engaged at the lower level of energy and capacity that is me now. I also have much less patience with meetings, I fear.

I am very into the process of fantasizing about and designing a possible stream to run between outside the dinning room and the lake in our retirement community.  I still am somewhat engaged with patient voice roles.

I still very much enjoy contact with folks.  Do not hesitate to reach out.  Thanks for all your support.


4 thoughts on “Update Time. Not So Great.

  1. Richard, I would love to know more about your stream. I’m with you on the meetings. Hopeful they will find a better medication. I know of no one who can mind the gap better than you, tedious and challenging as it might be at times. Sending love to all.

  2. Hi, Richard, an enlarged spleen is much better than an enlarged head . Too many people suffer from the latter. I am thinking of you with my fingers crossed . I could love to see your stream.

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