Monday, April 19, 2010

Update April 19, 2010

Some if not most of my friends will be happy to know I'm seeing a therapist. She's associated with Rush and has experience with chronic illnesses and cancer. I told her that I was starting to feel like I was being defined by my illness and she suggested I start a blog. That way I could update friends and family on my condition and progress so that when we talk or get together the conversation isn't centered on Amyloidosis or Amy. Now that is not to say that I don't want to talk about my illness and treatment. I still want anyone to feel that they can ask me anything it's just that right now I feel like it's the only thing I talk about.

So that said, lets discuss Amy. She's still here and she's a tough little bugger. The Bone Marrow Transplant (BMT) that we had so much hope in was not particularly successful for me. In fact I would argue it did very little other that further damage my kidneys (or as DTS calls them my Kennedys. I used to think that was a typo on her part but as she's a Republican and my kidneys aren't working well maybe there's more to it). I am ineligible for another BMT even though I have enough stem cells because of my kidneys. Three weeks ago I started on a chemo regimen called Velcade. It is a targeted drug which means that rather than going after every fast producing cell it goes after the bad ones. How it knows which ones are bad I do not know but this drug has been used with some success for Multiple Myeloma (which has some similarities to Amy) and Amyloidosis. Tomorrow, Tuesday I have my fourth treatment, I get a week off and then I do another four weeks, every Tuesday. In June my doctors at both Mayo and Rush will assess how it's working and decide what to do from there.

So far the side effects have been minimal and mild. Almost to the point where I was wondering if the Velcade was working at all, but yesterday I started to experience some neuropathy in my hands which is a known side effect. Pretty pathetic huh? I need side effects to feel happy! When I get the Velcade I also receive a high dose of steroids (Matt refers to my bouts of mania as Roid Rage). As the week goes on and the steroids wear off I crash and burn but that usually lasts for one day and then I start to feel better. All in all I really can't complain. I'm keeping my fingers crossed that the Velcade is working and enjoying the warmer weather. To all of you who are helping out by bringing meals, thank you so much. My greatest period of energy is between 10 and 3 so by dinner time I'm starting to run out of gas.


  1. Susan - Love this idea. I could use a therapeutic blog myself! You go girl. Amy's days are numbered. She's a be*&&^%!-aatch anyway. We'll all collectively scare her away by June. XOXO, Diane

  2. Susan - It's good to see you're promoting a bit of humor regarding your association with Amy. I'm disappointed that none of the commentors above got to the heart of the situation. I've heard all of the chatter through the years about "up v down" etc, but obviously if it's up and one wants it down, it is a simple motion to correct and the reverse is true, however the proper status when not in use, must take aesthetics into account. Therefore,when one completes the task at hand, the seat AND THE LID should be placed in the "down" position. Now, when the next "user" arrives each is confronted with the same circumstance - something must be lifted up - if one wishes to "sit", they will only raise the lid; if one prefers to stand, they will "hopefully" raise them both.
    NOW, what's our next topic?