Monday, September 29, 2008
Thursday, September 25, 2008
Wednesday, September 24, 2008
Tuesday, September 23, 2008
Finally coming home was wonderful. It took a few days to adjust, but I am so glad to be here with Barbie, Rebecca and Caitlin. It has been busy trying to clean up the loose ends that have built up over two months, but I enjoy it thoroughly. I just have to careful that I don't over-exert myself. I really missed my backyard. Those of you who have been to New England will remember that it is one giant forest. Trees everywhere, whose canopy rises 40 to 60 feet above the ground. Coming back to California, I wanted to be somewhere where I could look out of my window and see trees. Barbie found the perfect spot. The trees here, however, are quite different. The live oaks are shorter, rising 20 - 30 feet, and generally stand alone or in sparse clumps. They don't like to be crowded. They are beautiful in there own way. Since the branches don't blend with the other trees, you can appreciate them in their fullness. The ground-cover is the opposite of New England, In Connecticut, the ground cover remained green from May to October, while here, in California, the green begins in late fall and lasts till May. I love the contrast.
I have always been enamored with trees, This may stem from the fact that a tree saved my life when I was seven. I almost drowned in a river, only to pull myself out by grabbing onto a submerged root of a tree, an oak tree. That was the first time that my life was saved, but that is another story (someday, I may share it). Since then, for me, trees symbolize life. I have spent a lot of time in the last few days just sitting and admiring the trees. They are beautiful. When I was in the hospital in Santa Clara waiting for my new heart, I was not allowed to leave the cardiac ward at all. twice a day I would stand by the window looking out at the corner of Homestead Ave. and Lawrence Expy. The only glimpse of greenery was the neighbors' yards and Kaiser's landscaping. I really missed being outside.
Barbie and I try daily to keep our commitment to each other. Real life is rapidly encroaching, as is expected, but we make sure we don't lose our moments together. Physically, I feel wonderful. In our daily walks, my pace and endurance are improving. I am ready for the next phase of my treatment.
It is impossible to adequately thank all of the many friends and friends of friends that have remembered us in their thoughts and prayers. Your combined faith has wrought miracles in our lives. Barbie and I wanted to open our home on October 5th, 2008 and invite all of those who would like to visit. We realize that many are far away, but if you live in the vicinity, we'd love to see you.
We live in Lincoln, CA, just off Twelve Bridges near Sierra College Blvd. at 1720 Bella Cir.
Our phone number is 916-543-3299
Every once in a while it is valuable to stop and reflect upon how every person you meet, every sincere human contact, changes you. I have known thousands of people in my life. Each one has their own voice and their own story. Each one has something to teach me, as long as I am open to learn.
Saturday, September 20, 2008
Wednesday, September 17, 2008
We have waited for this day for so long. We left for Rochester, MN on July 15th and haven’t really been home since. We are so excited to finally be back with Rebecca and Caitlin and have our lives return to some semblance of normalcy. However, we do return with some trepidation. This time that Barbie and I have spent together has been extraordinary. We have been with each other all of the time, day and night. Some might think that this would drive us crazy and we would be craving our ‘own’ space. But it has been just the opposite. This is because, after 26 years of marriage, during this experience, our roles have changed so drastically. I have been dependant on Barbie for everything and this will slowly begin to change.
But we don’t want to go back to where we were. There have been some truly profound moments that have brought us to closeness reminiscent of courtship. On these occasions of quiet intimacy, the emotional range has vacillated from despair to exhilaration. These experiences have changed our relationship and each of us personally. The fear is that as we return home and to our responsibilities there that we will revert back to old habits. We don’t want to lose what we have learned.
Barbie asked me the other day, “Will you still spend time with me?” I knew exactly what she meant. Like so many married couples our lives were often controlled by our responsibilities and our leisure time often wasn’t passed in common interests. It is like we were dancing to different tunes.
The song has changed; and now we dance together. It will require a constant effort to maintain the harmony of that shared song to keep us in step with each other. We still have much to do. Soon we start treatment for amyloidosis; that is a big unknown. At some point we will both go back to work. But it is my commitment to Barbie to never lose what we have learned or fall back on complacent habits. I must always hear her song and avoid stepping on her toes.
We will find new ways to be together and make them habits in our lives. To do otherwise would diminish the magnitude and the memory of these powerful moments that we have mutually experienced.
Tuesday, September 16, 2008
- Biopsy and Blood draw
- chest x-ray
- clinic visit w/echo
Monday, September 15, 2008
Now my focus, now, is turning to the treatment of the amyloidosis. That is what got me here in the first place. To date, I have received no treatment for it because the heart took precedence.
I spoke today with Dr Witteles about a referral to Stanford to discuss my options. Dr Witteles is a Transplant Cardiologist at Stanford and was involved in the decision to get me on the transplant list there. He has a special interest in amyloidosis, as they are starting a program to treat amyloidosis here at Stanford. I am their first transplant in decades. (AL Amyloidosis, Leo had a transplant 4 years ago for AA Amyloidosis).
Dr Witteles set up an appointment for me to see Dr Stanley L. Schrier, Professor (Emeritus) in the Hematology/Oncology department at Stanford who is the expert there on the treatment of amyloidosis. In that visit we will discuss the timing and approach to the treatment plan. It could be to start on chemotherapy soon (when I am sufficiently recovered from the transplant) to control the amylodosis with the idea then to do the stem-cell transplant at a later date; or to use only chemotherapy, and if that reduces my serum kappa free light chains (the full name of those nasty proteins 'gumming' up my system) to a normal level, that may be all that I need. That would be nice.
I am so fortunate to have so many great doctors helping me to get better. I trust them with my life.
Life is good.
Sunday, September 14, 2008
Thursday, September 11, 2008
I metaphoran alien recently and he entered into my life. I’ll call him Jerome. At first I was anxious and then had a change of heart. He is, however, a legal alien. Unfortunately, once the IMS (Immune system) discovered him, they immediately set out to reject and deport him. Small squadrons of killer cells began to set upon him, but he was protected by his ‘Green Card’. Actually, multiple green cards from different agencies; Gengraf, Cellcept, Prednisone and Daclizumab. These were all administered, by me, under one umbrella agency, not dissimilar to homeland security. Fortuitously, the agents of these killer cells were repelled back to their cavernous marrows, and with luck, will remain dormant, as sleeper cells.
He made his home in the heartland and began work immediately. He works fulltime, now, and specializes in fluid and energy distribution. He works with such regularity and precision that he is often compared to the ticking of a clock, earning him the nickname, ‘Jerome, Jerome, the metronome’. (See Gattaca)
I hope to see him naturalized soon, and as a citizen, I can stand with him, hand over my heart, and pledge allegiance to this union. I sense that his tireless efforts will continue. I guess what I have learned is that we are all strangers on this borrowed land. Yet, as I serve to protect him and he labors to help me, alone we would remain alienated, but together we can stand free.
Wednesday, September 10, 2008
When the body begins to actively reject the heart, the process begins in the cellular immune system. These white cells activate by switching on genes that make specific proteins. These proteins then direct the cells to begin their killer and rejection behavior. Currently, the only way to observe this is to look at the end result, after the damage is done. This is diagnosed with a heart biopsy. Under the microscope, infiltration of the white cells into the heart muscle indicates the degree of rejection. Allomap is like gathering intelligence on the ground forces amassing prior to the attack.
What Allomap does is to measure the activation of the genes that start this process. When a gene is activated, the first step is to make a RNA copy of that gene from our DNA. The RNA is then transcribed and produces the desired protein. Allomap measures the level of the RNA reflecting the gene activity in that cell.
All that is needed is a small sample of blood. That's the easy part. There are only minute amounts of RNA in the sample, truly insufficient to measure directly. In order to have enough RNA to measure, millions of copies must be made first. The problem is, RNA is very fragile. It would be like copying wet tissue paper by sending it through a document feeder. It would shred on the first pass. To make copies, a stronger molecule is needed, so the RNA is first converted (translated) into DNA. In the conversion and copying process, short sequences of DNA specific to the genes being studied are used to bracket and copy only a cropped version of the gene; in the same way you would crop a photograph before printing it.
Then the copier is turned on and left running. The production is exponential, eventually making millions of copies of the turned-on gene. Now it can be measured. The process is called PCR, (Polymerase Chain Reaction). Allomap measure 11 genes of interest and 9 control genes.
At this point, the amount of data generated is huge, too much to be useful for interpretation. This is where the big computers come in. Since the process is proprietary, I can only imagine that some complex algorhythm using a type of artificial intelligence distills all of the data down to a single number, not unlike how an actuary works. They give you the bottom line.
In studies comparing Allomap to the 'Gold Standard' heart biopsy, the correlation is amazingly good, better than 99% Sensitivity. This means that it misses rejection in less than 10 out of 1000 cases.
Once again, I find myself very fortunate in that this new lab test was FDA approved for clinical use one week after I had my heart transplant, allowing me to be part of the first group to benefit from it. Instead of having 13 heart biopsies this year, I will only have eight
Life is good.
Tuesday, September 9, 2008
My flower garden was not in great shape when I left. I had kept it so beautiful and lush for Alexandria and Jeremy's reception, but when that ended my time was divided with our next wedding (travel arrangements and such), Kevin's health, church assignments and work. My flower garden took a back seat. I think when I come home one of the first things I will do is get my hands dirty.
I also miss our dog, Parker. I think of him home all day, alone. I know he is a dog and can handle that, but I will welcome his company when I start working in the garden again. He is great company. He will lie next to me on the grass, two paws crossed over his little stuffed toy of two years and glance at me every now and again, while still chewing. It's the cutest thing.
I miss cooking in my kitchen. I'm sure taking inventory and restocking will be high on the list as well.
I miss my friends at work. They are a great group to work with. Hi everyone.
And oh, how we miss our bed. We had just bought a new mattress for my birthday in May.
I didn't intend for this to be an 'I miss' blog, but many times I have intended to write one thing and said another.
Today we went to the transplant support group at Kaiser - Santa Clara. I finally met Debbie Douglas & her husband & great friends. Some of you may have noticed her comments to Kevin and I. She has also been diagnosed with Amyloidosis. It was frightening to her, but after having met Kevin, SOME of her anxiety has withdrawn. It all can be very scary. We all enjoyed some really great hugs. Of all the transplant patients, there are only 3 with Amyloidosis: Leo - 4 years out (hereditary amyloid), Kevin - 24 days out (AL systemic), and Debbie - waiting at home (AL systemic). They are a great support to each other. We talked to Dr. Nishime today and the plan is that Kevin won't meet with an Oncologist to start amyloid treatment until after the 3 month mark of the transplant. He is anxious to start discussion and have a plan. We'll have to wait a little longer.
Everyday I wake up and wonder what the day will bring and what our future life will bring. I am not worried, only waiting for direction.
Big hugs to all of you,
Monday, September 8, 2008
Sunday, September 7, 2008
I have been feeling much better and getting my strength back. Today we went for a two-mile walk. I do need to build up my endurance.
I had mentioned that Caitlin wrote me a song for my birthday. Her piano teacher helped her to record it, and another piano piece, so that I could hear them any time. With Barbie's new-found blog-editing skills, I believe she will likely post it on the site.
We are so proud of Caitlin. She has become so independent in our absence. She is very responsible and remains strong. We are also so grateful to Rebecca for being there for her and helping her while we are gone.
We can't wait to go home.
Thursday, September 4, 2008
California state law requires that all physicians take 12 hours of CME in end-of-life studies and palliative care. When I did my training, the course director asked all of us how we would like to die. Most people wanted a quick and painless death after a long and useful life. Unfortunately, only 10% die that way. When she asked, "Who would like to die of cancer?" I was the only person who raised his hand. She was puzzled and asked why. I was remembering my Dad and thought to myself, 'He died well' He was lucid and in control until the end. I explained this and she agreed. The rest of the class was consigned to die like most people do, after a long chronic illness takes it's toll over many years. This may seem like a strange discussion, but it is the reality that we will all come to.
When I began work at Kaiser, I looked at my Dad's x-rays and was shocked to see how much the cancer had invaded his entire skeleton. I thought, "He must be in terrible pain." And yet, he never complained. Even then, his focus was not on himself. The center of his life was always on his family. He never spent one night in the hospital. He died quietly at home surrounded by his family. Two days prior, I spoke to him and promised him that we would take care of Mom. The last words he ever said to me were "Thank You".
My parents gave me two great gifts in my lifetime. First was a strong work ethic coupled with the value of personal responsibility. The second was that they trusted me to make my own decisions, which included the risk of failing. For a parent, this is a hard balance to reach.
In my years counseling with and observing parents, I have found that many fall into the two extremes of being too rigid or too lenient. They either micromanage their children's everyday activities, allowing them controlled successes, but without real risk, or they aim to be just their friend who would never impose on their personal freedom. Both approaches are fraught with problems and based in fear. The middle ground is harder to maintain. Give them guidelines to live by, supported by example, and then let them decide, without subtle threat or coercion.
This gift from my parents was so valuable to me, that even when I left home, I would not do anything to break their trust. No child feels freer than when they are trusted by their parents.
As I spoke to my Mom about this, I realized something I had not noticed before. My parents have nine children and all of us have chosen to be productive and honorable in our lives. What I find even more interesting is that this has carried on into the next generation. All of my parent's 34 grandchildren continue to follow this pattern. I think of Barbie's and mine own children and how they have always chosen well. They have always brought us only joy.
It is no accident that I was born of noble parents. But with every true gift comes responsibility.
I have been given a 'second lease' on life. The memory of my father reminds me that I must continue in this life, as before, and never do anything that would lose the trust of my parents; the most valuable gift I ever got from them.
Wednesday, September 3, 2008
Every day is a little better.
The need for patience continues.