I am still here

I have not written for some time, at least not on the blog. I find it presumptuous to admit that I am writing a book. First, everyone writes a book. I see them everywhere. So it always feels strange for me to say that. Somehow it seems even more narcissistic than writing a blog. To say that I am compiling my memoirs sounds even worse, as if I am some important political figure or Nobel laureate. Suffice it, then, to simply admit that I am writing the story of a doctor who becomes a patient, and what he, and his wife, learn from it. As I write, I think of the audience as my future grandchildren. In twenty years this may give them a glimpse into who was their grandfather.
This, and other things, have distracted me from writing here. The Velcade is working well on my amyloidosis, but numbs me psychologically and emotionally. This would frustrate me if I cared more. I no longer have a clinical practice in the urology department. I still work three days a week treating prostate cancer with radioactive seeds and breaking kidney stones as well.
We spent a wonderful Thanksgiving in Phoenix with Alexandria and Jeremy and will have the rest of the family here for Christmas.
Life has become somewhat routine. This, of course is wonderful. It allows one to predict and plan for future events. I still have some difficult days (I had a very difficult weekend in Houston last Friday but recovered in time for my flight home.) But I always seem to get better.

For that reason, I may not write consistently on this blog in the future. This effort of recording our journey has been therapeutic and essential in helping Barbie and me survive this experience. The support of so many who have read and commented here is nothing short of miraculous. So many lives have intersected ours through this medium of the minds. I have mourned with those that have lost their dear ones to this merciless disease. We all fight the good fight. It will eventually take us all, but not before we learn who we really are through the struggle. It is not a contest of who has the most days. It is simply about how we live today. Sometimes we submit to horrible treatments for the hope of more tomorrows and, in so doing, give up some good todays. This is always the most difficult decision for all patients, all doctors and all loved ones. When is it enough? I am trying to find that balance myself. How long should I stay on Velcade? Should I always take it with Dexamethasone? Can I take chemotherapy holidays? Is this treatment actually prolonging my life? How low do my light chains need to be to indicate that it is working? I would go with my gut, but sometimes that fails me too. (As it did in Houston last Friday.) I am left with having to rely on faith as I stumble into the dark. Certain paths just feel right, so I continue on them. I don't worry too much. God has guided me to where I am. I trust that He will so continue.

There are so many of you dear, dear readers who have shared your prayers, your thoughts and you losses with me. I will always be here for you. If I can ever provide advice or support, a medical reference or just a listening ear; I am here.

My e-mail address is kray0819@gmail.com
My cell phone number is (916) 412-8416

When I finish the book, I will find a way to make it available to those that might be interested in reading it. It essentially fills in the gaps between the blogs to complete the middle of the story, as the ending is still unknown.

With all my heart, I thank you.

Kevin

To Elle, I am so sorry for your loss. Please e-mail or call me.

The Gift of Life-Have a Heart

Newly Trained Donate Life Ambassadors

Last Saturday I drove to Modesto to be trained as a Donate Life Ambassador for the California Transplant Donor Network (CTDN). As such, I have the opportunity to provide community outreach to DMV's , High Schools and Medical Facilities to encourage people to choose to be a donor when they get a drivers license or register online at the CTDN Website . It was very interesting for me considering that the majority of the other trainees present were families that had chosen to support their deceased loved ones wishes by donating their organs and tissues to other people. For them, from five to ten people benefited from this gift made during such a traumatic moment. I her multiple stories of the pain that they suffered from the loss of a son, daughter or husband, (they were all women.) And yet, they all felt a great sense of goodness as they talked of those who live and live better as a result of these shared organs. The woman to my left, Michelle, has become friends with the family of the man that has her husband's liver. Not all have had contact with their recipients or donors. The need to respect privacy is important and everyone grieves differently. I am fortunate to have written letter correspondence with my donor family.
I was so grateful to hear the process from their perspective. We all learned some very interesting things; such as the true definition of brain death, or brain stem death. For an organ to be donated there must be brain stem death before the heart stops pumping. The patient is no longer alive, however, the heart only continues pumping because the mechanical ventilator continues to provide oxygen to the heart. Hearts pump independently of the brain if you give them food and oxygen. Mine does.
I went to a picnic that night and asked everyone I saw, are you a donor? The two high school students were but most of the older adults were not. I was surprised. Most reported some myth to justify their response. I realized that it is important to share my story and educate, dispel myths and save lives.
There were two other women at the meeting that were liver transplant recipients. There was much interest for others to hear what it was like to be a recipient. They marveled at our courage, interestingly, we didn't feel courageous, we felt that without the transplant, we would not live. It wasn't a tough choice, if it was a choice at all.

Sometimes I say I am lucky, sometimes I say I am blessed, I just feel so grateful and humbled to wonder at why I have been so blessed. I have seen too many amyloidosis patients die too soon. This saddens me. I want to support organ donation, and more specifically, that more heart transplant centers consider amyloidosis patients for heart transplants. I know there are many out there that can be saved if their local center would consider them as candidates. How long do I have to live to justify getting a heart, a second life? Just one more day sounds poetic; but surgeons aren't poets. The actual number has been calculated to be 3 years 2 weeks 4 days and 13 minutes, ( +/- 2.5 years).

Are you an organ donor? Why not?

Kevin