Sunday, May 31, 2009
On the Right Path
Sometimes the path to recovery feels like hiking on the Appalachian Trail. So not to trip, you spend most of your time looking down to avoid tripping over half submerged roots and protruding rocks. Occasionally you have to stop and look up to see the pale green translucent light as the sunlight pours through the spring leaves above. Then you remember why you are on the trail in the first place.
The last month has been quite difficult. I have slowly been getter weaker, and subsequently, more despondent. My appetite has diminished and I have to force myself to eat. My labs results do not show a positive response to the Stem Cell Transplant. Everyone says that it is still to early to tell, but I can't always remain positive about the future. Essentially, I have no idea what is going on. Yes, this is from the guy who always has an explanation for everything. Not being able to write something positive left me without a desire to write; but that is disingenuous. I shouldn't be afraid to reveal all sides of this journey. In desperation I did something without getting my doctors' approval first. I started to take steroids again. Ironically the thing I had so been looking forward to stopping for so long. I will see my BMT and Oncology physicians at Stanford on Tuesday to discuss future treatments; I feel that they are going to start me on steroids anyway. However, in only 24 hours, the improvement is more than coincidental or purely placebo. The foot neuropathy that was so uncomfortable is lessened and my energy has increased. We are flying to New York on Wednesday for a reunion at Yale University and I needed to be stronger for the trip. I just couldn't wait any longer.
I keep reminding myself to be patient. All this will improve with time. The more time the better. As I incline my gaze upward, the light is always there. I am reminded that I am progressing on the right path, one slow step at a time.
Posted by kevinandbarbie at 11:29 AM
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You are such a guidepost of inspiration for me, Kevin. Thanks for sharing...all of it. Love, us
Kevin and Barbie,
Please know that my prayers and positive thoughts are always with you as you continue to move along the path of this journey...
Not sure how long you'll be visiting in the New Haven area for the Yale reunion, but would love to see you!
Kevin, I hope you are doing well. I miss you and I think about you often. - CS
I've been following your journey with interest. I wrote to you back in March. I am also an amyloid (AL) primary patient with restrictive cardiomyopathy due to the amyloid involvement. As is the case with you, I get frustrated with my body's insistence in doing its own thing. I needed to lose 5 pounds to get my BMI down so I could get placed on the heart transplant list. Instead of losing, I've gained 15. Now I'm back in the hospital for diuresis to try to "dry me out". Your constant updates of your journey have educated me, given me encouragement, and have helped me absorb a healthy dose of reality.
Please continue to blog and tell your friends and followers how you are doing. Also know, that we are pulling for you, praying for you, your family, and your doctors and nurses.
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