Wednesday, June 16, 2010

Another doctor appt has passed and now we begin again!

I won't bore you with all the details, but the recap is pretty easy:
- his light chain count has gone down. It is now at 10. That is great from where it was at in January (52). Normal is 2, so we are getting close
- he starts his next round of chemo today
- his echo showed some additional damage to the heart, but we knew that was possible, because until his light chain is normal, that darn bad amyloid is still working around in his system
- he is going to see the pulmonologist in Mayo soon about the cough
- he is also going to see the cardiologit at Mayo for a second opinion - YES - I am very happy about that
- his kidneys are doing ok

So, I think I have become that crazy lady that doctors/nurses dread seeing come into an appt. This time I had my binder ready with all my notes and list of questions. Thank goodness the doctors/nurses at Mayo are VERY patient and understanding - they must get special training that other hospitals don't give! :)

On the multiple hour drive to Mayo I kept picturing myself "getting mean" about wanting answers like I had to do in Waterloo. That I would need to stand up and pound my fists and say - "Don't you get it? Don't you know who this man is? This is MY dad!" But I didn't have to! Whew!

Instead I left feeling very drained, but very content about the next steps. This will continue to be a struggle, but I am so thankful we are where we are!

Thanks for ALL the prayers!


  1. Vasca Texas. My husband, Michael, discovered a something in his throat 20 April 2010 and 21 May 2010 he had a diagnosis of Amyloidosis. He's the pic of health and has just completed a barrage of tests and we should learn what type of Amy and the treatment plan 22 July. Blest to have discovered & diagnosed so quickly...two more test confirmed AMY. Thanks for your blog and your perspective. We wish you blessings and BEAT THIS THING!!!

  2. Update on previous comment. Michael Beall...we have diagnosis of Primary AL Amyloidosis. A bone marrow test last week showed no signs of Amy. It's hidden in some secret place.

    M has a Caringbridge if you'd like to follow:

    All of you are in our thoughts and prayers...Blessings, Vasca