Against Traffic

Highway 37 - Novato

Early one Saturday morning I woke up with a dilemma. I was completely out of ammo for my cap-gun. I started to formulate a plan. First I needed cash, I was only five years old so I didn't have a job yet. I knew, however, that my sister, Elaine, usually had a stash of cash in her piggy bank. I still wasn't totally clear on the concept of ownership, so repayment did not cross my mind. The nearest store to us was a Safeway located in downtown Novato on Highway 101. We lived in Ignacio about five miles to the south. Soon I was out the door and on my tricycle; but I didn't want to make the trip alone so I went by my friend's house to pick him up. Willy Coates was only four at the time and at that tender age did not yet possess the sense to try to dissuade me from my Quixotic quest. We navigated through our neighborhood of Loma Verde and after about 2 miles made it to the freeway. I was moving a little slower than usual; Willy was small, but standing on the back of the trike did add extra weight, especially on Alameda de la Loma which was a hilly street. Soon we were on the Frontage Road (appropriately named 'Frontage Road') and passed a number of strip malls and a gas station. No one took notice, as this was 1964. In those days kids could play outside unsupervised without their parents being arrested. I had to make a critical decision; cross over the freeway to head north with the north-moving traffic or take the shortest distance between two points and just get on the off-ramp for the southbound lane. Actually, I didn't even think about it. I have always taken the shortest route possible. I can only imagine what Willy and I looked like to the passing motorists. A five-year old riding a little red tricycle with a four-year old perched on the back, (holding onto my shoulders for balance) moving forward in the in the shoulder, against traffic. After about a half mile, we got to the intersection of Highway 37 as is comes across the top of the bay from Vallejo, and Highway 101. The overpass was actually just being built and still under construction. As we approached, a construction worker came up to us and asked what we were doing. I explained my dilemma and my quest. Somewhat confused and consternated, he suggested that we turn around and go home. I immediately saw the wisdom of his words and altered my course. We turned around and soon were off the freeway. Just as we passed a laundromat, my neighbor, Mrs. McNair came out and was putting a load of clothes in her trunk. She saw us and asked if we wanted a ride home. Soon the trike was in the trunk and we were safely unbuckeled in the back seat breathing a cloud of second-hand smoke. I walked in the house and began my usual Saturday morning routine of watching cartoons for four hours. A few minutes later, my parents got up and went into the kitchen. I never said a word to them about my aborted adventure.

Last Saturday I was sitting in the hallway at the University of California, San Francisco School of Medicine, waiting for the Amyloidosis Support group to begin, when this memory came back to me, but with a new question. How is it that at the age of five I knew exactly how to get five miles from my house without asking anyone for directions? Is that typical for most five-year olds? I guess I have always had an uncanny sense of direction.

Amyloidosis is a very strange disease; it acts like a cancer but it is not. It is not just one disease either. It really represents more of a common final pathway, but even that path might lead to different organ involvement. This makes the amyloidosis support group a bit confusing because the main thing we have in common is the name of the disease. I have primary, the man next to me has senile cardiac, the woman across the room has a rare familial type. They are all treated differently. To become an expert in amyloidosis it requires knowing about at least two patients with the illness. We had a professor from UCSF come to the meeting and it became clear to me that no one really knows anything about this disease. That does not really bother me, but clearly everyone else is frustrated. Everyone wants the same thing; a good explanation and a plan in which they can have confidence. To get there you need a doctor who is your advocate. A good doctor is one that can tell you what they don't know and what can't be done for your disease, and you graciously accept it because you trust them and know that they care. I see the difficulty that my fellow patients have because they haven't found their advocate. This may be because they confuse advocate with expert. There are very few experts in amyloidosis and the studies are based on small groups of patients. Most of our treatment plans are trial and error and every patient is unique.

And yet, I see great hope with this disease. After 20 years as a urologist there have been millions of dollars and millions of men with prostate cancer, and yet, there has been no significant improvement in prevention or cure of this disease. However, in the last five years new options for monitoring and treating amyloidosis have prolonged lives. Doctors are no longer summarily sentencing us to death.

My journey with this disease has seen it successes and failures, miracles and reversals of fortune. But, I have always had a sense that I was moving forward in the right direction, even if it was against traffic. I have trusted my doctors and accepted their plans even when the outcome was an unknown. For me, having a plan and moving forward is more important than having an assurance that it is right. It requires a leap of faith. In the end, the sum of all this forward movement has resulted in great progress and improvement of my life.

My advice to my fellow amyloidosis patients is to be grateful in your patience, but don't be passive or angry. Get the information you need to make your decision then move forward. If one door is closed because you are already to sick, find another way. Even if your doctor is not an expert, they still can help you to find your way.

Keep moving in the right direction, even against traffic.

Kevin

The illusion of immortality

The Modern Family

Elena

Kevin and baby Kevin

The Dison Family

Bowling Night

I apologize for my tardiness in sharing all the good things happening in our lives. Interestingly, herein lies the dilemma. Songwriter, poets and bloggers often lose their muse when things are going well. I psychologically crossed some invisible thresh hold about 6 weeks ago where I now no longer see a mortality date stamped upon my life. Currently I have returned to the billions who are emotionally unaware of when they might die and live life with the illusion of immortality. I am totally fine with that. Back to the "eternal sunshine of the spotless mind" where my psyche ignores my intellect. Prepare for the worst; Hope for the Best; and plan for ten years from now.

Christmas was fantastic. We had all of our children and daughters in law here. All of Barbie's family was here including her brother Daniel, his wife Emma and their two children, the immensely precocious and overly cute Elena and the well named Kevin. We don't see them much as Daniel is in medical school in Wake Forest in North Carolina. Our visit was interrupted by my 3 day excursion to the Big Apple for the wedding of a very close friend, Brian Ciccotelli and his bride, Isa. The entire two weeks was filled with reunions and a house full of activity. It was great. I miss them all.

Now it is back to life. I work, Barbie is in school with inorganic chemistry and microbiology and Caitlin has the same busy schedule. A doctor friend asked today if I couldn't just find a way to be on disability; I responded, "I love to work and will continue as long as I can." What more can I say.

Kevin

Health Update

I thought I would leave a few lines on how goes my health, with the emphasis on health, not illness. Ironically and, of course, serendipitously, as you continue to feel both better and normal, you insidiously begin to forget those previous really bad days; to the degree that an occasional mildly bad day seems more annoying than it should. This is what healthy people feel like and I am glad to be here.
The new normal has now lasted long enough that it is now just plain ordinary normal. Hence, I don't really think about it. The bottom line is that I generally feel good.
Where am I now? I am between a health score of 82 and 86 depending on the day of the week (or month)and depending on the timing or certain drugs. But, as you may recall, the beauty of the eighties is the presence of motivation. I remain excited to make a checklist and fill in the boxes when the task is done.
Full disclosure prompts me to share what this normal actually is, for those that might be following in a parallel path.
What I experience now falls, at present, into two categories: Symptoms of amyloidosis and side effects of drugs. Since I have not had a serious infection or heart rejection in months, categories 3 and 4 are currently quiescent.
Amyloidosis now involves my entire GI tract and remains stable as far as I can tell. My tongue is too large for my mouth with bothers me mostly at night as it pushes against my teeth. I can neither whistle anymore nor use my tongue to clean food from between my gums and cheeks. It is very difficult to swallow solids, sticky foods or large pills. My appetite remains good and I am now overweight at 198 lbs (notice that I didn't round up to 200, well I am more round anyway). My bowels are less predictable necessitating the awareness of the proximity to the nearest water closet; nuff said. I get out of breath quickly with rapid and immediate heavy lifting, especially if bending over is involved.
Autonomic and peripheral neuropathy have caused that my feet are simultaneously numb and hypersensitive. But it is like wearing a tie, initially the tightness bothers you, but soon you get used to it. I don't really notice it during the day. I also have lost peripheral proprioception and central (inner ear) balance. I compensate purely by visual input. If I close my eyes while standing unsupported, I start to tip. This is a combined side effect of my disease and drugs, specifically, Mycophenalate (Cellcept), My fingers and lips are numb and my teeth hypersensitive to cold.
Medication side-effects include (but are not limited too) 1. A wicked bad intention tremor, (anti-rejection drugs Prograf and Myfortic/Cellcept) Eating soup or balancing peas on a fork is comical. 2. Complete loss of balance, (for two minutes), on standing after a long car ride or sitting at a desk (Cellcept/Myfortic) 3. Hypertension (Prograf) 4. Hypomagnesemia/low magnesium (Prograf) 5. Anemia/low red cell count (Septra and Valcyte) 6. Neutropenia/low white cell count (Valcyte and Revlimid) 7. Low Platelets (Revlimid and Bone marrow transplant) 8. Easy bruising (Decadron, prednisone, low platelets and aspirin) 9. Thin skin and poor healing (steroids) 10. Insomnia (generally only on Wednesdays; Decadron) 11. Hiccups (Thursdays, Decadron) 12. Fatigue (everyday, all of the above) 13. Loss of sense of humor, Saturdays from 10:00 AM to 12:30 AM (Decadron) 14. Hearing loss (I not sure why) 15. Hoarseness, worse on Wednesdays (Decadron) 16. Osteoporosis (Decadron/Prednisone) 17. Wicked bad muscle cramps at 4:00 in the morning (may be mineral or metabolic imbalance). 18. Red spots/spontaneous bleeds in upper eyelids, (Amyloidosis, hypertension and aspirin). 19. Tachycardia/Rapid heart rate and atrial bigeminy/irregular beat (due to a neurologically untethered heart. My brain and heart were never reconnected. I remain a mute scarecrow to my tinman). 20. Overuse of bad puns (that's just me, I can only blame myself).
Know that I am not complaining nor am I looking for sympathy. Most of the above symptoms either don't really bother me or I have adapted to them. The most annoying symptom is probably the tremor. Otherwise, I really don't think about them much. I get up after a typically dream filled and restful night's sleep, eat my Lucky Charms or Life cereal (apropos) and go to work. Work is still amazing and I love it. My co-workers are all fantastic people that equally want to serve others. Work is my favorite medicine with the most wonderful side-effect; memory loss of myself.
To complain on my condition would be most ungrateful. I am now planning my life up to six months ahead; I put my money where my hope is. I would be happy to stay just the way I am for years to come.

Kevin

P.S. I finished posting the above and found that my light chain levels had just come back after completeing my most recent course of Revlimid. The kappa light chain level has dropped to 113 mg/l. This is the lowest level since my bone marrow transplant. That is just too cool. I thank God, and all of you.

World on an island

Walking in midtown Manhattan the week after Christmas is akin to forging through the wilderness. The frigid wind blows relentlessly down the canyons of glass and steel. I was prepared with gloves and a scarf, but since I had a suit on today, and I don’t own an overcoat, the chill burrowed through to my bones. We all are familiar with aggressive drivers; however, as one enters the domain between 5th Avenue and Time Square, only aggressive walkers survive. The sidewalks are a mass of hundreds of thousands of pedestrians moving and pushing into the streets in semi-total chaos. Every momentary gap between humans must be entered or lost. Forward motion feels like fertilization; only the strong get through. I am not that strong anymore, but I am experienced in this urban jungle.
To escape, I descended underground only to find a dead-end as all three Metro Card dispensers in the 49th Street station for the N-R trains were “out of service”. I climbed back up to face endless tourists walking toward me as I headed for the 42nd street station. They were all looking up and pointing their cameras and cell phones toward the walls of the surrounding buildings to collect photos of advertisements for Twizzlers and Nivea Face Cream. I wonder how many will go to Target to print these pictures to show their friends and say, “See this three-story high M&M, this proves I was in New York.”?
Finally, I made it to the station in Times Square, and like a well trained rat, worked my way through the labyrinth there to the stairs for the R train to Brooklyn. As I waited, I heard the sound of percussion and my curiosity drew me down the platform to see a young man playing a very unusual ‘drum set’. “This guy is good.”I thought to myself. I had just missed the previous train, so I had time to enjoy his performance, and it was truly a performance. His primary drum was a 5-gallon bucket. But he also had a small snare, cymbal, chimes and maybe 8 other small and unusual percussion devices. As the station slowly filled and provided an audience, he began to interact with them and was soon rewarded with dollars and coins filling his cut-off 2 liter bottle. Directly over his head, people were paying $140 to see a musical. Within 2 minutes he had engaged an audience of 100 people, some dancing, all smiling. Then the train came and we moved on.
I love New York. To me, Manhattan is the whole world on one small island. Not the physical world, but the world of humanity. Whatever peoples and cultures exist out there, they each own a small corner here. Today an older gentleman, well dressed, emerged from a limousine as a chauffeur assisted him to the waiting doorman of the building 8 feet away. Sitting to the side of the door was a man of similar age looking down at nothing in particular fighting off the cold with layers of bags and newspaper. I don’t judge either, they are each products of their decisions and circumstances. But they reminded me of the diversity of extremes that co-exist here in such close proximity.
New York is a collage of many villages juxtaposed against a paucity of space, all pushing and maneuvering to carve out their little piece of pie that is the ‘Big Apple’. There is an energy here I don’t really feel in any other city. A part of me will always feel at home here, but New York is a walking city and I tire out after about 15 blocks now. That just means I have to stop, sit for a while and just watch the humanity go by, all hurried to get somewhere to do a million things; most of them completely unaware of the other humans that surround them. I will often pick an individual out of the crowd and wonder who they are. Are they happy? What experiences have they had? I will watch them as long as I can until they disappear into the crowd, never to intersect with my life again.

Kevin

Anatomy

Yesterday we laid in bed until 1:00 AM going over Barbie's anatomy. Wait, let me rephrase that. Yesterday we laid in bed until 1:00 AM reviewing anatomy to prepare Barbie for her final. I was impressed with how well Barbie knew details about every system in the body. She took her tests yesterday, first the lab exam followed by the lecture exam. Today she got her results and was excited to learn that she did extremely well on both exams and got a "B" as her final grade.
I am both proud and amazed at how diligent and unrelenting she was in her efforts to master such a difficult subject. Nobody worked harder than she did. Now she can relax and begin to prepare for a house full of family, beginning tomorrow. Rebecca comes home tomorrow. Barbie's brother, Daniel, comes on Sunday with Emma and their two children Elena and Kevin. Jeremy and Alexandria arrive soon after, while Samuel and Michelle will journey from Southern California to Lincoln the day after Christmas. Barbie's parents and brother Lloyd and his family will also be here from Utah. It will be a wonderful Christmas with so much family so close.

Today I had the opportunity to again speak at Grand Rounds at Kaiser, as we did last year, to give an update on my progress as a patient. The theme of the meeting was miracles and many doctors presented cases of patients who had unexpected recoveries where death and disaster were assumed to be the only outcome. I was the last speaker and spoke not only of the miracle of my own recovery from septic shock after the bone marrow transplant, but how this whole experience has changed me in my interaction with patients now that I have returned to work. I was grateful to be able to share what I have learned. And I still learn new things every day.

Nothing can stop us as long as we have hope. Neither the daunting volume of anatomical terms to memorize nor the ravages of disease; with hope, all things are possible.

Kevin

Chistmas Carols

I love Christmas music. I miss caroling in Connecticut with friends when it was 5 degrees outside. We would go with our friends, the Smiths (Michael and Mary Jane had wonderful voices). Tromping through the snow we would find neighbors at home and then harmonise carols. Wassail would be waiting when we were done.
Tonight we attended the Youth Christmas Concert at church where Caitlin, in addition to being part of the choir and two other groups, had a solo as well. I have always been partial to altos and Caitlin sings like her mother, in that pure alto tone. She did a wonderful job. The crowd was large so we had to sit in the back. A family sat next to us that I did not recognize. Their four children were very well behaved so afterward I commented on such, knowing that parents like to hear that kind of feedback. We visited for a minute and I asked if he was there to see someone in the choir. He responded that he came to support a student in his history class, Caitlin Anderson. As a beaming father I blurted out, "Caitlin is my daughter." How wonderful it is to have a high school teacher that supports his students like that. He told me what a great student she was and I readily agreed.
Soon our other children will be home and we will have one soprano, two altos, one tenor and two baritones. It's time to sing.

Kevin

Heart Transplant Celebration

Tuesday I drove to Santa Clara to attend the annual Heart Transplant Holiday Party. The food was wonderful and not necessarily heart healthy. (There were no salt shakers to be found) Mostly, it was great to visit with fellow heart recipients. You cannot get a new heart and not become a new person. We all have common themes, we are all grateful, we don't worry as much about trivial daily inconveniences, we are all excited to return to our passions, or at least find new ones to replace the ones we can't do.
And then Dr Weisshaar began the traditional roll-call. The old guys stood first; a transplant done 22 years ago, 20, 15 etc... These guys looked great. We kids all looked am them with childlike hope. "Maybe I'll be at the party in 20 years." Each year had its graduates, some only had one. My year, 2008, was well represented. But 2009 was impressive; 22 heart transplants. Remember,this is just from one Kaiser clinic that serves only Kaiser patient in Northern California. It was not that there was more people with heart disease this year, there were just fewer people dying from it. This is due to the tireless efforts of our transplant cardiology team, the surgeons at Stanford and the Northern California Transplant Network with their amazing ability to match families in that most difficult moment with well trained teams and earnestly waiting patients.
Sir Isaac Newton gave us the first law of thermodynamics which teaches that every action has an equal and opposite reaction; a man's life is given up and life is given to a new man. One must die so that one can live. A hard reality to digest when first considered for a transplant, but then the social worker, Janet reminds us that death happens every day. Our wishing for a heart does not cause it. Then you accept it and prepare yourself. One day the call comes and as the heart flies in your dream fly with you on you last trip with your old heart. Most of your heart is then removed and the new one is sown to what is left of the back wall of your right and left atria. Your aorta is sown to his aortic root; pulmonary vessels accept and return oxygenated blood to the alien organ and, on its own, it begins the first beat of hundreds, thousands, millions. My metronome is set at andante and my dynamics forte.
We honored those who had passed in the last year and welcomed the families of a few of the donors who had so courageously given, in the words of Lincoln, "The last full measure of devotion." In the silence that followed we all recommitted to live our lives to honor their legacy.
It was a joyous reunion,
The we had a raffle fundraiser, generally I never win, but today I won two. First a bath spa set in a beautiful basket. That was for Barbie. I was just about to leave when I stopped to great Yolonda and her family. She is like me; AL Primary Amyloidodis with a heart transplant, waiting for a stem-cell transplant. She is the third. And then I heard my name from the front. 'Kevin, come get your prize' As I walked forward I noticed Dr Weisshaar hold a complete Wii Console with sports bundle. I was in shock. I took the mike and blurted out something like "With this I can help my urology patients NOT to Wii, Wii, Wii all the way home.
In the end, we all looked at each other and were amazed that we all looked so healthy; life goes on and on and on and we build our homes in our new normal.

Kevin

Snow in Lincoln

It never snows here, well, let me rephrase; it almost never snows here. Yet today we woke up to a view that we didn't expect. The entire neighborhood covered in white. Californians that live below 1000 feet react as if it were an alien invasion when this happens. The rest of the country yawns and pull out the snow shovels. The media sends out troops of reporters to stand in the middle of the street in various towns to say, 'Yes, there is snow in Lincoln, or Granite Bay, or Rocklin.

I must say, it made me very nostalgic. I love the snow, always have, because I am a California boy and grew up in its absence. Driving to work through my neighborhood felt surreal as the gray-white mist diffused and unfocused the view of all the lawns and roofs as they blended into the sky beyond. It felt like, for a moment, I was back in New England. I loved it.

Years will pass before we see this again, it is its rarity that makes it fun. I know that those of you that reside in Colorado, Alaska or Connecticut, wryly smile and consider us silly at such glee in something that just annoys so many others, but it is the simple unexpected pleasures that make life fun, like opening an unexpected gift on Christmas morning. Don't worry, soon we will go back to our perfectly boring California warm weather.

Kevin