Tuesday, December 20, 2011

I've had some difficulties posting on the blog but believe I've finally solved the problem so here's the update. As noted earlier the carfilzomib made me pretty sick and just when I had prepared myself to talk with Rifkin about withdrawing from the trial he told me it wasn't working and we had to switch. Fortunately there was another drug on the shelf--bendamustin, which I started 2 weeks ago. I get 2 infusions every 3 weeks, along with dexamethasone and revlimid for 21 days straight. These drugs push my red cells, white cells and platelets down in the nether regions. That in turn necessitates trips to the hospital for transfusions, at least on a weekly basis. I typically am at the clinic/hospital 5 to 7 days a week. Quite the life. Of course, since I can't drive due to my messed up arm, Susan has to drive me to all appts., and sit and wait as I get treatment. I think her role in all of this is worse.

My left arm is healing, albeit very slowly. I can touch my left finger to my nose! Reminds me of which, as kids, we used to try to touch our noses with our tongues. I couldn't do that either.

I wish I could paint a different picture, but we're dealing with some very difficult issues. It seems there aren't any treatments left. It's all complicated by my nonfunctioning bone marrow. From my perspective it is extremely frustrating as I would do anything to keep going. So we let the bendamustin treatment shine a ray of light and keep us moving forward.

Peace, light and love to all.


Stephen Greene said...

You're a tough man with a wonderful partner. As bad as it is for us patients I agree it's worse for care givers. In my thoughts and prayers, Dan..

Steven L. Ritter said...

Hang in there big guy and Merry Christmas to you and your family!

tim's wife said...

Prayers going out to you, Susan, and your whole family. You are a trooper, Dan, and an inspiration to us all. Wishing you peace this holiday season. x Denise

Ingrid said...

Dear Dan,
although I've been 7 months without an Internet connection, I could read your posts quickly from the office.
Always know, that you get over this, and see yourself in a pretty future.
I love you and Susan, and wish I had more contact with you two.
Merry Christmas, from the other side of the world

Sandy said...

Hi Dan, I'm in Denver with my daughter for Christmas and am thinking of you and Susan and your whole family, and continuing to intend there's still something in the hat to be pulled out for you. None of us who are caregivers want to hear the words that tell us our loved one has received the ticket for the Glory Train ride. And certainly the love you and Susan share has played a huge role in your fight to overcome this horrible disease. Praying for you both every day.

Lori Puente said...

What incredible warriors you and Susan are!

sigun said...

Dear Dan,

Hang in there... Thinking and praying for you. Bises, Sigun.

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