The past week has been very difficult. I have had little motivation to do anything. I haven't been on my computer for four days. Every day I would wake up, eat a small breakfast, take my medications and go back to bed. I am completely wiped out all of the time. I have had to stay home and not work. Emotionally, Barbie and I are spent. If this is only caused by a virus, then I should improve. But if the bowel problems are from amyloidosis, I may never get better. You can imagine what that feels like when the proximity of death is so palpable.

Everyday I eat and drink as much as I can tolerate; this means a constant consumption of very small amounts of food and liquid. I am maintaining my weight so far.

Today, I have had some good moments. I had to give a lunch lecture in Rancho Cordova to a group of Primary Care Physicians. Mostly I answered questions about urologic issues and cases. However, at the end I presented a case which, in essence, were all of my symptoms and findings before I was diagnosed. Finally, from one corner of the room I heard 'amyloidsosis'. I was quite pleased that someone thought of it. The physician told me after that he once had cared for a patient with renal amyloidosis. At least the other doctors will think of it in the future.

I am hopeful. I will start Revlimid this weekend which did seem to work last fall to treat my amyloidosis.

Kevin

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.

Kevin

Uplifting

Our daughter, Rebecca, posted this on her blog as one of her favorite hymns.  We were moved by this as it is one of our favorites hymns too.  Hope it lifts your spirit as it did ours.

Barbie

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

Kevin

In the hands of great docs again

This morning Kevin and I headed down to Santa Clara Kaiser for him to be admitted, again.  He spiked a fever last night and was weaker then ever.  We new he needed fluids and some good old fashion hospital care.  Since we've been here he has been seen by the Cardiologist team, Infectious Disease, & Gastroenterologist team.  His symptoms, this time, have made him extremely weak and fatigued.   He said everyday feels like the second day of a bad flu.   These teams together are trying to figure out what is going on with him.  They need to rule out heart rejection and amyloidosis in his G.I.  We hope this is a nasty virus, because viruses can get better.  He's had all kinds of labs already and will have a colonoscopy in the morning.  He joked that this is one proceedure that he's never had.  For dinner he gets to drink  Go-lightly, but Kevin calls it run-quickly.  This is to clean out his G.I. for the colonoscopy in the morning.  He's relieved to be here.  At home he tends to self-diagnose.  Now he can relax and let everyone else take care of him.  It's a good thing.  

I'll update when I know more, 

Barbie

A little lost

I am really sick and I don't know why. It is one thing to suffer the side-effects of treatments that you hope will make you better. However, I thought that I was done with that. I am so weak it is hard to move. It could be a virus, or the amyloidosis is now affecting my gut. I have no appetite. I have very little motivation. I am using all of my energy to hold on to hope; since ultimately, that is the only thing we have.

This is not a result of me going back to work, I have been like this for almost two months. It's just getting worse. Returning to work was wonderful. At work, I must always remember that I am the doctor and not the patient. As I tried to explain to a patient yesterday that at age 77 he need not worry too much about the prospect of prostate cancer he interrupted, "Stop right there, Doc, I plan on living to 107, don't you?" I stopped myself from saying what I wanted to, and instead said, "That's a great goal, don't ever give it up."

In the past, every time I felt really sick I would wonder, 'will I get better?' I always did. I have to believe that I will.

Kevin

Health Score 62

Chapter 5 -The Final Chapter

Chapter 5

Curiosity compelled me to inquire of this man’s fate after he gave to Arthur his remaining years. The illumination in his face as he described Eva’s performance disappeared, as if he had just exited a room full of light to one bordering on twilight. “He died three weeks later.” Arthur flatly stated. He went on to explain that the man had not given him his name in their final meeting. But he did live locally and one day Arthur recognized his picture in the paper associated with his obituary. Arthur wasn’t one to usually turn to the obituary page, but since their encounter, he had hoped to find the stranger through his imminent death. There was his name, his date of birth and date of death. His life reduced to one short paragraph. He had no surviving relatives, none mentioned anyway. However, the time and location of the funeral services were included.
He went on how the services were simple and respectful. The man was an attorney with a practice in town. He had a number of friends in attendance. One gave the eulogy and described his life in a way that Arthur knew was not reality. It was a list of things he did. It did not include why he did them or what he learned from them. Arthur felt that he alone truly knew this man, knew how he must have suffered with his ‘ability’, and that saddened him. Who would remember and tell his story? The true story? The service ended and Arthur began to walk home, to his empty house.

Suddenly his face changed again, back to the one lit by the memory of Eva. He seemed somehow to look younger than he did just seconds before. There was an excitement in his eyes as this new memory took over his countenance. “Then the most amazing thing happened!” He said with childlike excitement and began to tell me the rest of the story.

When he was done we both sat in silence. One word more would have been one too many.

He was looking again across the creek to some distant point beyond; not to some specific geographical location, rather to some point not bound by time or space. I looked too, eyes unfocused, toward the same point. Which point for me was as much mine as it was not his. We sat there in silence for a while and a sudden gust of wind sent a chill through the back of my neck. A random page of a newspaper blew by my feet. My concentration now broken, I noticed the lack of sounds; the playground nearby was empty. No birds were calling out to each other. The twilight had descended, but it was not yet dark. I looked at Arthur and mentioned the lateness of the hour and that my wife would be concerned at my tardiness. I stood to leave, not knowing what to say, but his eyes said it all. He then vocalized his thoughts with a simple thank you. His story was now mine. It was as if a burden had been lifted from him. But in receiving it, I also felt lifted. I, in turn, thanked him and slowly walked to my car.

In the ensuing months I would occasionally pass by the park on my way home from work to see if he might be there on that bench. I never did see him again. But I know that wherever he is, he is fine. I remember that day so vividly. His story changed the way I look at my own life. I arrived at home and tried to explain to my wife why I was late. She just gave me this funny look and moved to the microwave to reheat what was left of dinner. I was not ready yet to tell her the whole story. It would take time for it to completely become assimilated in me. I could not sleep that night. The last part of his account kept replaying over and over in my mind. As I searched for its meaning, his words continued to echo through my thoughts.

*****************

“Then the most amazing thing happened” Arthur continued. The cemetery was not far from Arthur’s house. He began to walk down a path that ran alongside a small creek to his left. On the right was a park, which at that time of day, was busy with moms and kids playing. There were people walking dogs as joggers dodged them on the various pathways through the park. Between Arthur and the creek was a straight row of pine trees, equidistant in spacing from each other. Arthur noticed something familiar in seeing these trees. Suddenly, his mind was taken back to that memory of his youth. Again he saw the fence posts from the car window.

But they were different now, they moved with him. He could see each post perfectly; no blur at all. The corn in the field also moved with him. It was no longer a memory. He was transported to the place of his memory, but the past had now become the present. He was no longer in the car, nor was he a child any longer. He was standing alone and everything was in motion: the fence posts, the corn stalks, the trees, even the clouds overhead. All was in motion and moving with Arthur at the same speed and in the same direction so it almost felt as if he were standing still, but he wasn’t. He could feel the motion. But the movement was not just forward, rather in all directions simultaneously. How could this be? He thought. All directions: up/down, side to side, backward and forward, became one. And Arthur was at the center. He could see mountains, lakes, oceans, sky; all in motion. He could not, however, find the sun. Yet, everything was illuminated. The light was unimaginably bright, but not at all blinding. Everything around him was bathed in this light. But something was missing. At first Arthur couldn’t ascertain the absence of something so natural, that it is only noticed when it is not present. Finally, he saw what he couldn’t see. He had no shadow.

He looked around everywhere, there was no shadow. He lifted his foot off of the grass below his feet; nothing but illuminated grass. He searched the skies for the source of light. He saw no sun, no moon, no stars; only blue sky and clouds. Then a thought, almost like a voice, but heard not through his ears, came to him. “The source of light does not cast its own shadow.” It stated. At first he did not grasp its meaning. Again the thought came, “The source of light does not cast its own shadow.” When finally it came a third time, the light filled his mind and he understood.
As Arthur had been telling me of this experience, he was looking down, sometimes with his eyes closed; almost as if he were attempting to see it again, and by focusing on any particular object in the present, he would lose his connection with the event being revealed. However, at this point in the accounting, he looked directly at me and said in an almost imperceptible whisper, “The light was me. It was me!”

“And then it start to rain” he said after a long thought, very matter of factly.

He described the rain as not what you would expect. It was not drops of water falling from the sky. It was a shower of words. As he looked up, words were falling toward him. And not just from above, but from all directions. The words themselves took on a form of multifaceted translucent structures; something like spheres, but without any rounded surfaces. Flat polygonal facets formed the surface. Each facet was a different color. But the colors would change as the word fell and rotated toward him. They were ever changing. He searched frantically for the word. He needed to find that one word which perfectly described how he felt at this moment. It seemed impossible as he was now surrounded by millions of words. Some were quite large with few facets and others smaller with many facets and rapidly shifting colors. The words nearest to him often represented feelings or ideas. Distant smaller words might denote the mundane functional symbols we use without thinking; table, pocket, email, pickle etc… He saw happiness float to his right. No, he had too many memories. Others he saw: joy, contentment, relaxed, relieved, charitable, loved. Each one he had felt in some way. But there was one; only one, that could be the summation of this perfect moment. He searched words near and far. Some words floated quite near to him, while others moved away at a rapid rate.

Time passage seemed as an eternity and then he finally saw it. High above and behind his left shoulder he caught the first glimpse. He turned toward the word and it filled his gaze. As it slowly descended something changed. The word became solid. It was no longer translucent. The facets became fixed in their colors. But each facet contained not just one color, but all colors simultaneously. However, they did not fuse into one white color nor were they split as one might see through a prism. All colors were present together, each one distinctly present and visible; almost as if layered, and yet each one on the surface. As the word descended, all other words became black and white and fell to the ground at his feet. They were immediately absorbed into the grass and disappeared. The one word fell upon him, enveloping his whole being, and he knew it was the right word. This was how he felt.

He was complete.

Time stopped. There was no past, neither could future be imagined. Only now was present. The moment filled his existence. The present is the gift we give ourselves. He swallowed the moment and made it his.

He was complete.

He was on the path again. The trees there on his left. The creek spoke to him as the water ran over the submerged rocks. He again heard the sound of chains on the swing-set with the yells and laughter of children. He saw the birds as they moved from tree to bush to ground and back up again, calling out in chirps and whistles all the while. He noticed he had stopped walking and was merely standing in the middle of the trail. How much time had passed? A single second, an hour? He could not tell. He began to walk home again for the first time. As he walked, his thoughts returned to the man who had given him life; who had given to him a new life.
His name was Shane.

Dedicated to Barbie
Whom I love with my whole new heart.

In Memoriam of
Shane
August 8, 1975 – August 14, 2008
Who gave me my whole new heart.

Kevin

Chapter 4

Chapter 4
Within six months, Eva had regained her strength sufficient to begin dancing again. However, she now was driven like never before. She committed herself to dance every day except Sundays. Her passion only grew with time. Her mother made sure that she balanced her school work and what other activities she could convince Eva to participate in. But she seemed a ‘fish out of water’ anywhere else but the studio. Here she was the happiest. Her talent, rather gift for dance, became evident, not only to her own teachers, but regionally. Eventually, at the young age of 18, she was asked to join the Pacific Northwest Ballet Company. No one worked harder than Eva. Yet, no one could have enjoyed themselves more. When she was dancing, she became lost in her real self. She could express in form and motion what she could never find in words. She somehow felt the drive to fill a lifetime of desire in a few short years. She did just that.
Arthur knew that he did not have much time left. But he had few regrets. The one that did surface on occasion was that he would not be able to see his grandchildren grow to adulthood. He kept up on their progress. Mark was an excellent student and, like his father, was drawn to sports. He played Little League baseball and was the short-stop on his middle school team. Arthur was especially proud of Eva’s accomplishments in dance. He tried to go to every recital that his work schedule allowed.
Work; Arthur buried himself in work. It was who he was. It was what he knew. Some people, with the realization that they had only two years to live, would quit their job and attempt to fill their lives with as many extraordinary experiences as they could, travelling, skydiving, bungee jumping , etc… Things that they had meant to do for years, but had ‘put off’ because they were always too busy with the mundane. Arthur was content to work. He had already passed through more extraordinary experiences than he cared to remember. People still needed him; and he needed them to need him.
It was a little more than a year since he had added to Eva’s life when a stranger walked into his shop. Arthur, not looking up, said he’d be with him in a minute, as he put the last screw in the air filter casing on an old roto-tiller. He got up, wiped his hand ritualistically on an oily rag and approached the service counter. The man was older, older than Arthur by a number of years, but Arthur could not guess his age because of the youthful look in his eyes. His eyes; there was something familiar about his eyes. Arthur searched his memory for some glimpse of recognition but before he could do this the man exclaimed, “Arthur, it is so good to finally meet you,” And extended his hand to shake Arthur’s. Arthur, somewhat embarrassed as he stole a quick glance at his greasy hand, hesitated as he raised it. The man noticing his hesitation, with firm resolve, reached forward and grabbed it with both of his hands and only then said two words. “Thank you.” Arthur felt it immediately. He knew the sensation only so well, but had never sensed it in reverse. It was as if the river that had been carrying him for years was now flowing upstream. Arthur looked down at hand held firmly in the stranger’s hands, then, slowly he looked up into the stranger’s eyes and only now recognized him. With tears blurring his vision, he saw those eyes; that were his eyes, also mirrored with tears.
Arthur was speechless. The man, continuing to grasp his hand, finally broke the silence. “Arthur, as I am sure that you now realize, we possess the same …. ability.” He faltered on the word ‘ability’ which Arthur, only so well, understood. “You now stand there as shocked as I was when you gave me such a gift so many years ago in the hospital. For years, I tried to understand why you did it. How could you give so much to a total stranger, without even any explanation of who I was or how I was suffering, but you did. Your reason still remains a mystery to me; however, I am resolved to leave it as such.” He motioned to two wooden chairs next to the door and they both sat, positioning their chair to face each other. He continued, “I, like you, knew when I was going to die. It is never exactly seven years, but occurs usually within a month.” He added, “Possibly, you already know this.” He continued, “When you found me, however, I was terrified and angry because I still needed to live for a long time. That day in the hospital was not my time, I knew that I still had a few years, but that wasn’t enough.” The man paused a moment as if to consider the best way to proceed. “I have a son, had a son,” he corrected. “He had sustained a closed head injury in the war and could not care for himself. I was his sole caretaker. There was no one else.” Tears again filled his eyes. “You see, I could not die, I had to be there for him.” He took Arthur’s hand again and continued, “You gave me the time I needed. Without knowing why, you gave it to me.” The stranger’s eyes silently conveyed a gratitude beyond words.
“I have suffered with COPD, chronic obstructive pulmonary disease for many years. That day that you saw me in the hospital was from a particularly bad exacerbation. After you left, however, I recovered quickly, to the amazement of my doctors. I returned home to care for my son and continued to do so until his death 6 months ago. Without your gift, I could not have been there for him. I have spent the last five months looking for you; to thank you with the only gift that I had left. The gift of time.” He stopped and with a look of genuine satisfaction stated, “I have given you all the time that I have.”
Then the question came to Arthur’s mind. The question that he could never ask before because of the certitude of its answer. Since he was 21, Arthur had known the approximate day of his death. Now, for a brief moment, he experienced uncertainty. He had no idea how much time this man had given him. Torn between the relief of uncertainty and the habit of having known he struggled to ask and finally blurted, “How long? The man, understanding their lifelong shared dilemma, their gift that remained a curse to the giver said with a wry smile, “More than a few years, but less than seven.” And, in so doing, magnified his gift to include uncertainty.
Arthur was now just like everyone else; ignorant to the length of his life. In that moment he felt a freedom that he could not even remember having felt before. He audibly uttered a thank you. But the words fell flat compared to their intention. The man briefly shared a few other thoughts and insights that only he and Arthur would understand. Arthur, in turn, could voice his feelings about their shared ability and felt so relieved in doing so. An added gift was knowing that he was not alone. The fact that someone else had walked the path that he was on encouraged him. He would never feel alone again. And then, as suddenly as he had entered Arthur’s life, he stood, wished Arthur well, and was gone.
He stopped speaking and appeared to be lost in thought. There was a faint smile on his face as if he were remembering a cherished experience. In the silence, I wondered how many years had passed since this ‘reversal’ had occurred. There was no way to tell. The late afternoon sun still gave its warmth despite the occasional breeze. Hours had passed as he related this most extraordinary of stories. One could only wonder how it would end. But I felt that he had more to tell me, his audience of one. He had entrusted me with the story of his life; to not let it die with him.
He chuckled as the memory concluded and looked again at me and began, “It was only last year when I was able to see Eva perform as lead ballerina in the Pacific Northwest Ballet Company’s production of the Nutcracker. She was transcendent. It was the singular greatest moment of my life. She moved perfectly. Every moment of every day that she had prepared was fulfilled in that performance. In her lifts, gravity ceased. It was as if her partner was holding her down to keep her from flying. I sat mesmerized by her focus and form. But her presence was not at all technical; each moment was filled with emotion. I felt as if she were giving her whole life to us, to me; every sadness and every joy. I never felt more alive. That was the gift the he gave to me; to live to see her dance.”

Kevin