Sunday, June 28, 2009

A new day - a new life

I am on an emotional roller-coaster. Dr. Epstein, the psychologist, said I know too much and try to focus on the realities of right now and to visualize improving. I do know too much about how I feel and what it might mean. Many of the pathways are not good. Balance is everything. You can't lose more water from your gut than you take in. No matter how much you drink, you will become dehydrated. That is where I have been for the last two weeks. There are three possible causes. First, this could be a residual side effect of the bone marrow transplant and I will just have to hope it eventually improves. Second, it could be from progression of my amyloidosis; if so it is not likely to improve and would ultimately kill me. Third, it could be caused by a virus, specifically cytomegalovirus (CMV) with can possibly be treated. We are hoping for the latter. The biopsies from the colonoscopy should be back tomorrow or Tuesday. The IV fluids they have given me have helped, but mostly I sleep all day and remain very weak.

Last night I was quite despondent after seeing that my light chains had not improved confirming to me that the BMT did not work. Barbie lay next to me in my hospital bed to console me. Through the shared tears she wondered if this too were part of God's plan. Speaking aloud, I responded, 'Maybe it is God's plan that I will.....' I couldn't say the word; not in front of Barbie, but she knew. Just because I accept my eventual death, I will not hurry it through defeat and apathy. I have always accepted God's will and in so doing, have been blessed with the most fulfilled and happy life that a man could ever hope for. My faith in Him will not falter just because I am in temporary pain. Barbie and I agreed that we can deal with the intellectual preparations for the inevitable without opening that emotional scab just to reconfirm what we both already know. This is not denial; it is survival.

Today is better. Dr Blum, the infectious disease specialist, came by and gave me hope. I am determined to eat all that I can. Bishop Merrill called to say we were missed and that our friends are praying for us. And then my brother-law, Daniel, called from North Carolina. He is in medical school at Wake Forest. His wife, Emma, today gave birth to their second child and first son. He said that they had chosen a name for him. When he spoke the name, I was speechless; overcome by a profound sense of humility and honor. What a wonderful day it has become. A new soul has arrived and his name is Kevin Ezequiel Dison



Janna Hargadon said...

Love you guys and the tender feelings expressed are a gift. When you get's Thai soup that will go down easy and a scooter race where you can feel the wind blow through your hair! You would have laughed to me the other night up at the pond to see the sunset..when I realized that I had just run out of gas and had to push and coast and push and on a skate board. Lucky for me it was a slightly down hill experience. Missed seeing you guys there. Parker is happy and being well fed. Take care,

Anonymous said...

Hang in there, Kevin and Barbie! I'm praying for you.

Kent Johnson,
Albany, NY

Anonymous said...

"Each time I think of you, I thank my God for you. And when I pray for you, I pray with love."

And your task, should you choose to accept it: Where is this in the bible, and what is the exact wording?

I'm praying often.
love, Aunt Renie

Wendy said...

it sounds so cute to say "baby Kevin" :) congrats...we love you.

Patty Kuntzmann said...

You are constantly in our thoughts and prayers! We are here for you always! Hang in there and PLEASE don't hesitate to call. We are so close and we love you all very much!! Take care
Patty, Bill & Family

Emma and Dan said...

Baby Kevin is amazing and wonderful. I can't wait for you two to meet. :) We LOVE his name and feel so blessed to have been able to officially welcome him into the family Sunday night.

Thank you for always keeping us updated on what is happening with such honesty. It really helps us to feel connected to you guys despite the distance.

I wish there was something tangible that we could do to be helpful to you and Barbie and the kids, but please know that you are always in our prayers and we are sending love your way!