Thursday, July 2, 2009

Home again

Barbie and I returned home on Tuesday. The initial biopsy results showed cytomegalovirus (CMV) in the colon and some 'fluffy' stuff that required further identification. This turned out to be plaques of amyloid protein in the stomach and intestines. I am now on high doses of an antiviral drug called Valcyte. Additionally, they temporarily stopped my Cellcept (an anti rejection drug) to allow my immune system to fight the virus. Next week, when I am feeling better, I will start the chemotherapy to fight the amyloidosis; hence my new slogan, 'chemicals for better living'.

I am feeling a little better. Of course, just being home does that. I am still very weak, but I am eating better and getting plenty of fluids. Barbie is a wonderful nurse. Yesterday we were pleasantly surprised to have a visit from Samuel and Michelle who are here for a family reunion for Michelle's family. The pool was 86 degrees and I went swimming with Caitlin and my niece, Sofia.

I face a difficult road; the next two weeks are critical. We will have to fight these invaders now on two fronts simultaneously. I cannot do this alone nor do I have to. I will always have Barbie at my side.



Tanja said...

I can't stand to read silently any longer....I'm deeply saddened to hear this news. My thoughts and prayers are with you and Barbie. I know the plan our Father in Heaven has for each of us is perfect for us...yet still so hard(for us) at times. May you be blessed with more of that amazing faith and zest for life that has carried you thus far. You have an incredible story and I thank you for sharing.

Kristin said...

I am thinking about you and Barbie often. Please let me know if you guys need anything, I would love to help. If Caitlin ever needs a place to go, I would love to spend some time with her. Neal misses you, and hopes to be able to call you soon.

marniandgarth said...

We have been thinking about you and praying for you. Glad you are back home. Put on that Superhero cape. You can do this.

Kari said...

You are in our thoughts and prayers always. Glad you are in the comfort of your own home now with Barbie at your side!

Anonymous said...

Dear Kevin and Barbie, I came across your site after searching for primary amyloidosis, something I haven't searched in long time. I like that you share so much of your journey through your illness. My husband, Richard Neubauer, an internal medicine doctor, has lived with primary amyloidosis for ten years. He went through a stem cell transplant in 2002 at Sloan-Kettering. His doctor is Ray Comenzo, who we both adore. Rich has given talks, and has written about his experience as a patient. Rich put together medical education meetings for almost twenty years here in Alaska, last year being his last one. The meeting was on doctors and their illnesses, or someone in their family with serious illness. While some in the medical community were critical of such a meeting because it was not clinical and did not want to attend, the feed back Rich received from the attendants was that it was his best meeting ever (and he has had Nobel Prize winners speak at some past meetings). This meeting was put up on the internet through the University of Alaska, Anchorage. I will certainly tell Rich about you and show him your web site. Thank you. God Bless.
Sincerely, Elle Ryan Anchorage, Alaska

Anonymous said...

O.K, I can't stand this any longer.........Please let me know how you are doing. It has been a week and I think about you often (and Barbie)! Take care, Susan

Anonymous said...

My wife showed me your web site and I'm sorry to read about how difficult a time you are having. I hope that this passes and things start working better for you.

Elle mentioned to you that there is a web site where some of the lectures from the physician as a patient conference I helped organize last year are located.

The URL for the site follows. It may be useful to read some of the stories (including mine):

I also wrote a piece in the Annals of Internal Medicine a few years ago that you might be interested in:
Richard L. Neubauer
Paranoia over Privacy
Ann Intern Med, Aug 2006; 145: 228 - 229

My thoughts are with you.

Rich Neubauer

Anonymous said...

Great to hear of your progress!

I had to laugh when I read about your hiccups from the decadron. I had the same thing when I took it for more than a day at a time (I'm currently taking it once a week along with cycles of revlimid).

Keep up the good work and keep healing!

Rich Neubauer