The Last Blog - Full Circle

Recently I was asked to speak at a donor family celebration in Reno. Each year Donor Network West honors the families of those, that in their passing, became organ and tissue donors and thereby saved and improved the lives of countless people and their families. As I reflected upon this miraculous blessing in my own life I thought back on all of the moments and memories that I have had in these past nine years. I have seen 7 grandsons born, we have traveled the world and found countless natural and cultural discoveries, both at home and abroad, I was able to return work for eight years and thereby helped in curing cancers and improving countless lives. I still spend every day with the love of my life, which is the best gift of all. I wrote a book. I became a pilot. So many more moments of beauty communing with nature and communicating with others which are innumerable; all because of a heart.

Memories continued to pull me back. I was laying in pre-op at Stanford University Friday evening on August 15, 2008. The last beats of my old heart counting down the seconds with just over 14,000 remaining. A nurse informed me that my new heart was on its way from Reno. The only information that she could share was that he was 6' 2" tall - my height. I began to think about the terrible grief that must have overcome his family. But I had to focus on the moments just ahead of me. I was not afraid at all. This was the most right of all moments. How often do we get to remember the moment just prior to being born? I was so happy.
The next morning I woke up, what an understatement. Consciousness; I was me again. I felt indescribably infinite gratitude. I was luminous.

Three days later was my 49th birthday. As I laid awake in the darkness as my thoughts returned to my donor's family. All I wanted to do was thank them, I wondered if that could ever happen. In my mind I wrote the following blog and posted it a week later.

August 15 was the day that two worlds were uniquely united, and at the coeur of it all, a heart. This heart had already lived a lifetime in my donor. Each beat becoming the sum of his existence. Altogether they wove a tapestry of color and life that reflected all of his joys and sadness, his longings and toil. The heart was his witness and his strength, unfaultable in marking each moment, constant. But then, the unthinkable occurred, and as his life silently slipped away, his heart kept going, awaiting a new life. In that moment, my donor made the ultimate final gift, his heart to me.

My own heart has served me so well. I have experienced more joy and fulfillment in one lifetime than most men would have in three. But my heart was worn out, ravaged by disease and struggling daily to keep me going, and soon, it had marked its last beat.

While I lay there on the operating table, for at least an hour, I had no heart inside my chest. My survival was maintained only through machines and technology under the skilled hands of committed doctors and nurses. And then, his heart was placed inside me, and my life began again. I had a new heart, but it is not completely mine, nor will it ever be. For it is a shared heart. This shared heart has already lived a lifetime and must be remembered as such.

This must be why I have the strong desire to hug everyone. A hug, in such a simple act, can bring two hearts together, marking a brief moment of friendship. I feel like I should share my shared heart with others. I will honor the memory of my donor by offering his gift to others with a hug.

Two things that heartbeats and hugs have in common are that they are both strong symbols of the importance of being in the present. Past regrets and future concerns have no place in the moment of presence. What I have learned from all of this is to cherish the present.

My dream is that someday, if allowed, I may meet the family of my donor and through the simple act of a hug, reunite them with him, one more time in the present.

In memory of my donor and his family.
Please say a prayer for them.

Kevin

 August 27, 2008

I finished my remarks and the meeting ended with a video remembrance of each donor whose family was present that day. This was a week ago Saturday. The first photo was of Shane, my donor. I did not expect this. I had met Shane's aunt 2 years ago after she had contacted me wanting to meet Barbie and me in Roseville, CA, however, st that time, Shane's parents were understandably still not ready to cross that emotional bridge. A week prior to the Reno donor celebration I had invited Shane's aunt, Patty, to come to the meeting, Through Donor Network West she had his photo included in the video presentation. As it appeared she then whispered to me, "Bev is coming." I couldn't hide my emotion; would my dream from nearly nine years ago really come true in the next few minutes? The meeting ended and, as I got up to move to the front of the room, I turned around and saw a woman I had never before seen looking at me and smiling. In my heart I knew who she was as she said, "I am Beverly." I quickly moved forward and as I hugged her I said, "I am Kevin. Thank you for my life." In that moment the heart of a son was reunited with his mother. He was home.

Barbie was soon at my side, the reunion was almost complete. Within minutes we were joined by most of Shane's immediate family. I met his older sister and her daughter, who was born soon after her uncle's death, his 92 year old grandmother was there, his uncle and finally his cousin who only two years ago received a kidney-pancreas transplant which simultaneous cured his kidney failure and diabetes. We had come full circle, two men, cousins, one a donor and one a recipient; no one can deny the magnitude of the impact of these life altering decisions experienced by this family.

We visited for a time, we spoke of Shane, we hugged and then parted ways.
I am who I am because of so many decisions. Many were mine, but many were not. Years prior to his death, Shane told his father that if he ever died, he wanted to be an organ donor. Later, when the family was approached concerning organ donation they checked his wallet and there it was on his license -DONOR. We are nothing by ourselves. It is only through our shared experiences, sacrifices, relationships and love that we can ever feel true joy; that we ever fully become complete. A man died and I still live. Another Man died and I will, and Shane will and each of us will live forever. And this is why my cup of gratitude will forever be overflowing

Thank you for your interest and caring

Kevin

Hearts Reunite

Shane's Family

Shane - My Hero

The Sky's The Limit

Bill and I after my first solo

About four months ago I met an amazing 92 year man. Since my days as Chief of Urology at the VA Hospital in Connecticut I always ask the same question to men of a certain age. "What did you do in the war?" Which war is always understood based on their age. He replied, "I flew B-17 bombers in the Battle of the Bulge." I excitedly told him that I was learning to fly to which he responded, "Are you a natural?" I said that I didn't know. Today I soloed for the first time. It was incredible and exhilarating. Learning to fly has also been the hardest thing that I have done this side of forty. I was not a natural. Learning to consistently land well took many hours of practice. The intellectual study, physical control and mental focus was immense. It's hard to learn to do something very difficult in your fifties. So often we're just coasting at this point. Yes, I can do difficult surgeries, but I developed those skills in my twenties and thirties. We can still learn new and difficult skills later in life, but you must pay the price and not give in to the momentary disappointments and self doubt. Today I celebrate the opportunity to fly and learn and see the world from a completely new point of view. We are only truly old when we stop learning.

I've always wanted to fly but never really considered it an option given all of the other responsibilities that took priority for my time. Then two years ago Barbie gave me a gift of an introductory flying lesson. I was immediately hooked. However, at that time, patients with heart transplants could not get a regular pilot's license. That has now changed but certain chemotherapy drugs also limit ones access to such a goal. Then for Valentine's day I got Barbie an introductory flight lesson. It was so fun to see her pre-flight the Cessna 172 and the take off with the instructor. Soon, to her delight, she was in control of the plane; banking and turning, as we flew over our house. This reignited my desire to fly. It turns out that to fly a light-sport plane a medical exam is not needed. All that is required is a valid driver's license.

I began my training in June with California Sport Aviation in Lodi, California, which is a 55 mile drive from Lincoln. My flight instructor is Bill Bardin. We spent many, many hours flying over the Sacramento valley, learning maneuvers and landing. He is a good instructor, but he wants perfection as he feels responsible for the ultimate safety of the pilot and the plane. Many times he would pull back on the throttle and say, "Your engine just quit, what are you going to do now?" And I would scan the earth for a suitable landing area and execute a low approach, (as if I were going to land). I often felt like a medical student again being grilled by the professor. I don't know if any pilot ever gets their instructor's voice out of their head. In a way, I hope not.

It seems that all of the really difficult things in life that we learn require a good (and patient) mentor. I was fortunate to find Bill. I was also very lucky in that we never cancelled a lesson for weather or equipment issues. I now feel confident to continue learning on my own. I spent a year during my fellowship with Dr Clayman learning how to do a laparoscopic nephrectomy. But it was only when, at Yale a year later, that I did my first case as the attending that I really felt like the surgeon. This is how I feel today.

You can do anything that you really put your mind to. The sky's the limit.

Dream Come True

The first night after my heart transplant I had trouble sleeping. As I lay awake in the dark my mind drifted to the person whose gift had just changed my life forever. I began to compose a letter to his family in which I expressed my desire to meet them in person so as to give them a hug and bring his heart close to them one more time.

It has now been almost seven years and the dream finally came true yesterday. My donor, Shane's, Aunt Patty and his grandmother Gertrude were in town for a tennis tournament. Patty, who is paraplegic, competes internationally and was in Roseville for the weekend. On Thursday we opened the mail to find a card from her hoping to meet us. Shane's cousin had recently received a kidney/pancreas transplant which stirred in Patty a desire to find out about me. I couldn't be more thrilled to meet her and her mother, Gertrude, who just celebrated her 90th birthday.

Barbie and I arrived at the Johnson Ranch Tennis Club about a half mile from where I work every day. My emotions were raw and spontaneous as I knelt to give her a hug. They told us all about Shane; about who he was and his personal decision, conveyed years earlier to his father, to be an organ donor. I felt a new closeness to him and to our shared heart. The connection was complete.

Words can never convey the gratitude that I feel to him and to his family. When my time here on earth is done, (a very long time from now,) I will find him in heaven and finally know the man that made my continued mortal existence possible. For now, meeting his family fulfills a wish and a dream that has lingered so long.

Kevin

Grandpa Anderson

My Grandpa Anderson died in April 1959. I never knew him in this mortal life. However, I believe that my birth 4 months later helped to comfort my parents in their mourning. My earliest memories included the assurance that my Grandpa Anderson knew me in heaven and sent me to my mom and dad. Years later I came across a few documents that he had written. In those few pages I sensed a connection between us; his love for nature, his loyalty and patriotism. How teaching was so significant in his life. Of the sorted photos that we have of him one stands out. He is sitting on his porch, looking out over his front lawn to the mountain which would have filled his view. He is holding a grandchild on his lap.

Here I am now, 66 years later, holding my grandson on that selfsame porch in his house which is now my house. Buildings vary so little over the decades. While the people inside and the world outside change faster than we can adapt. Beyond the white picket fence I see the golden washed clouds over Mt Timpanogos as the sun sets to the west. This is a moment. I am now Grandpa Anderson. I belong here.
We traveled to Utah last week for the blessing of Luke Daniel Anderson, our youngest grandson born 7 weeks earlier to Samuel and Michelle. All of our children, their spouses and Luke's three cousins came to witness the event. What a joyous reunion it was. We are currently scattered in five states.
Four grandsons in one year; what a dream come true. Jamison David Solari, son of Caitlin and Ben turned one this week, followed by Kent Durham Anderson, son of Alexandria and Jeremy, who is 10 months. Then Seth Douglas Hammond, son of Rebecca and Jason, now 8 months old.
Sunday arrived and it was time for the blessing which occurs at the beginning of Sacrament Meeting. We encircled Luke with our hands as we stood shoulder to shoulder; four generations. Sam invoked beautiful blessings and promises. As we sat down again in our pews I casually glanced at those around us. With Barbie next to me I saw to each side and directly in front each of our four children and their spouses. On each of their laps sat a firstborn son. I reveled at the amazing beauty of this moment/ Could life ever feel better than this?
Then suddenly a surprise. It was announced that the musical interlude would be performed by the Anderson siblings, soon on the stand we heard our children sing together for the first time in many years. Jeremy on bass, Samuel tenor, Rebecca sang the melody with Caitlin on the soprano descant. I was overcome with emotion.
To paraphrase Elder Neal Maxwell, "If moments are the molecules that make up eternity, this was a macro-molecule."
Is there a happier man than me? I think not. To be present at such gatherings, to return to work full time, to see my grandchildren born and develop. To have a new heart for six year that remains free of amyloid deposits, the wake up and fall asleep next to my true love and eternal companion everyday is more than I could have dreamed of a few short years ago.

My Goal: Make as many new and lasting memories as possible
My Plan: Stay alive
My Hope: Increase in integrity and compassion in all that I do, like my Grandpa Anderson

Kevin

Kent and Seth

Kent

Cousins

Jamison and Luke

Four Generation (Mitochondrial line)

Michele, Luke and Samuel

New experiences

Some people are thrill seekers. They are into extreme sports so they can get that "adrenaline rush". Yet, there is a certain sense that in taking risks you feel truly alive. I  love to experience new things because it allows me to see the world from a different perspective. Ah, yes, the "per" words perspective and perception. These vernacularian twins represent vision divided by reality. What wise soul would not want to increase their perspective, thus allowing them to see the world from different angles, viewpoints, the other side to every story. Since perception is reality, at least at the individual level, the inherent value of fine-tuning our perception through the summation of its angles is immense. Perspective augments perception.
Some new experiences require us to step outside of our comfort zone: Trying Thai food for the first time, riding a mule down the Grand Canyon, speaking at a press conference with the Speaker of the California State Assembly. Just jump in, the waters fine.
Today Barbie and I spent the day at the California State Capitol in Sacramento. April is Donate Life Month and Donate Life California, of which I am a volunteer ambassador, was tasked to spend two days working as advocates (the non-profit word for lobbyists,) to encourage state senators and assembly members to vote for AB2399 which would facilitate simpler e-registration for organ donation. Barbie and I had no idea that this meant meeting with legislators and their staffers. In one office we met Sen. Berryhill who had a heart transplant 13 years ago. We shared an emotional moment as we remembered the gift and sacrifice of our donors.
Finally, at the press conference, it was my turn to speak after the Speaker, Sen Perez (the bill's author). I was told that I had 2 1/2 minutes (oddly reminiscent of junior Sunday School 50 years ago.) Various disparate ideas coalesced into one of the most coherent messages that I have ever given. Even my laryngitis was momentarily transformed into a steady low bass. In essence I shared that the depth of gratitude that we as organ recipients share is beyond preparation. It wells up from the innermost core of our souls and remains a daily reminder of our indebtedness to the kindness of compassionate strangers.
As I finished, the leaders at Donate Life California felt that I had properly shared their vision and their message.
I have never experienced, first hand, the inner working of politics. I have new perspective which can now, hopefully, fine tune my perception.

Are you an organ donor?

Kevin

Eat Better in 2014

"Eat Better in 2014" Catchy title. But this is not a blog on the virtues of vegan existence or grazing on crudites. It is about eating stuff that tastes better. And we all know what makes things taste better: FAT.
For Christmas I asked for an A&W Root Beer mug set. (nothing's better than drinking root beer from a frosty mug.) and a Presto Fry Daddy deep fat fryer. Barbie bought the upgraded version with a lid and a basket (still under $25.00). Everyday during the Christmas break my son-in-law, Ben, would ask with child-like exuberance, "What can we fry today?!" We did sweet potato fries with a horseradish fry sauce, corn-dogs, green beans a la tempura (healthy crudites) and even deep fried Oreo cookies.
Finally the day came when I had to attempt the coup de gras, double fried French Fries or, as we call them here in Southern Placer county, 'Lincoln Frites'.*
For the record, I used many organic ingredients, even the plastic lid on the fryer and the extension cord were organic, albeit if your definition of organic refers to items composed of carbon-based molecules. Were synthetic fertilizers used on my potatoes or peanut oil? Actually, I do not know; nor do I care.
I began by squaring off three Yukon Gold potatoes and cut them into 3/8" rods using a fry cutter called 'a sharp knife'. (The choice of Yukon Gold was arrived at when I opened the pantry and found some left over potatoes from Christmas Eve.) These were washed in ice cold water until clear and transferred to the fridge.
Now these fries cannot be confused with Fast Food because it took over 10 minutes to heat the peanut oil to 325 degrees. I the cooked the fries for about five minutes until the outsides were barely crisping and the insides barely translucent.

Upon holding the fry, it was limp. (let it cool first.) These are then place aside in a bowl.

The oil is then heated to at 375 degrees.

The first batch I under-cooked because they mistakenly looked more golden brown in the fryer. The second batch I cooked for about four minutes and they were perfect; and I'm talking Celestial perfection.
The fries are then drained on a deconstructed paper bag. The indigenous peoples of the Altiplano near lake Titicaca in Bolivia have been draining on paper bags for centuries as this is known to remove all of the oil from the potato thus rendering the fries 'fat free'.** (or is it un-rendering?) After a light dusting from your salt pig, you eat. These can be perfectly paired with nothing, or not nothing.
They are great at work parties, weddings, divorces, Bar Mitzvahs (substitute Kosher salt) and  in your RV while travelling to New York. (just set the fryer to 375 and the vehicle to cruise control. (even better with Burgundy sauce))
The extra raw cut potatoes can be stored in water and fried up in the morning for breakfast.

Eat Better through more expensive oils with high smoke points

Eat Better with creative sauces all based on more fat

Eat Better with batter

Eat Better by calling your mayonnaise "aioli"

Better Eat quick, your fries are getting cold.

Kevin


* Now Gluten Free for people who don't actually have celiac sprue, but feel better when they don't eat gluten.
**FDA disavows this claim as unsubstantiated.

Carphoria

Carphoria noun (karforeeah) OLD ENGLISH 
The experience of exhilaration felt while driving home in your wife's convertible roadster with the top down in 65 degree mid-December weather from your Velcade (chemotherapy) injection appointment which is then augmented by having the general euphoria that comes 8 hours after ingesting large doses of steroids (Decadron) which makes you slightly hypo-manic prompting the playing of rock music at level 11; way louder than either your wife or audiologist would allow. Finally spiced by the wearing of shades, fedora and a care-worn leather jacket with the setting sun scene in the rear view mirror.

Speaking of Velcade, I have learned a few things about how best to receive it. First, and foremost, get it injected subcutaneously. It is just as effective and has less peripheral neuropathy complications. (see review on AmmyloidHope.org) Second, ask the nurse to inject it deep. The very first time I got it, the nurse placed the needle under the skin superficially by inserting the needle at an angle as she entered. This resulted in the drug both irritating the dermal layer of the abdominal skin and also getting absorbed into the skin lymphatic system. Within three days this caused severe skin inflammation with red-purple lines tracking to the groin where the now inflamed lymphatics drain. 
The next week I asked the nurse to push the 1/2 inch needle perpendicular to the skin and all the way to the hub. I actually grab my abdominal wall to give them a deeper target so that it doesn't hit muscle. It's almost painless. The area still turns faint red is is mildly painful to touch, but it resolves in a few days instead of two weeks. Since I often have a different nurse each week, I offer a gentle reminder before they take the plunge.

Little things can make a big difference.

Kevin

South Africa - Gem of the Southern Hemisphere

We recently traveled to South Africa to Kruger National Park for a four day safari. Then it was off to Cape Town to experience the beauty and wonders of the southern most tip of the African continent. It seem a bit surreal that in the same year we have been to both ends of a continent that I never expected to visit in my lifetime. Tangier, Morocco and Cape Town, SA are as different as New Haven, CT and Lincoln, CA. The trip was magical. We were fortunate to have David and Natalie Boucher, (Maria Boatman's uncle and aunt) as our guides. They have traveled extensively to Africa as missionaries.
We began in Kruger National Park, a game preserve, and stayed in the Skakuza Camp. It is fitting that Skauza has the phonetic ooZ in its name as we were literally in a reverse Zoo. We were in the cage with an electric fence keeping out the native animals.
Everyone want to experience an encounter with a least one of the big five. Some visitors count themselves lucky to see more than one. We saw all five every day.

Leopard

Lion

Savannah Eliphant

White Rhinoceros

African Buffalo

In addition to these majestic beasts, we encountered numerous other mammals, exotic birds, giant reptiles.fascinating flowers and unique trees. It was a naturalist's dream. Our tour guide Knut and our safari guide and driver, Sam, made sure that we were up close and personal with the untamed world of Kruger.

Each night we would return to our thatched roof bungalows, gates were closed and we were treated to traditional South African food which is a combination of British meat and potatoes and South African item such as meli pap (a corn based porridge served with tomato-onion sauce) bobotie (a meat casserole) Biltong (jerky) and Malva pudding for dessert.

Skakuza Camp

After a five hour bus ride to the Johannesburg airport we then flew to Cape Town and stayed near the waterfront. Highlights included a gondola ride to the top of table mountain. The most beautiful coastal drive to the Cape of Good Hope, Evenings on the waterfront having dinner with the Boatmans and the Cardinets, the trip to Robben Island where Mandela was imprisoned for 25 years and strolling through Kirstenbosch Botanical Gardens

Native Village near Pretoria

Cape of Good Hope

Don, Jason and Me conquering Table Rock

Coast drive

White sands

Kirstenbosch Garden below Table Rock with a table cloth

View of Cape Town and Table Rock from Robben Island

South Africa will be a trip that we will remember and cherish forever.

Kevin

When the New Normal Becomes the Old Normal.

Sonoma Coast

In the midst of the anxiety surrounding the decision to undergo the bone marrow transplant I asked a question that hitherto I had not broached. Nor have I asked since. Before asking I was aware that doctors our lousy fortune tellers, but that didn't stop me. As Dr Schrier and I discussed the details of our joint decision to proceed with the procedure I asked him to predict my future. "If the stem cell transplant works, how long can I expect to live?" I asked, hoping for hope. "Well, generally after four years the disease tends to come back," he reported. Immediately I said,  "I was hoping for ten years."
Where did that number come from? Why not twenty? I see numbers in everything and ten years resided at the corner of pragmatism and optimism; facts and faith.
After the stem cell transplant, but before I knew that it failed, I wrote a fictional story of a man who knew exactly when he was going to die. (Link to Solids) There was no pre-planned allegory or moral that I was trying to convey. It was just a story. Over the years I ascribed many things into the meaning of what 49 year old me was feeling as 54 year old me re-read it. What I see most now is the consummate importance of the unknown. We metaphorilize the future unknown as darkness, yet is it only the place where the light has yet to shine; and we hold the beacon.
Two and a half years ago I stepped down as chief of my department. It was hard to fulfill all of my responsibilities while working only three days a week with mounting side effects of my varied chemotherapy drugs. I was often sick for extended periods of time. I remained on disability and closed my practice to new patients. I focused on a referral practice to treat prostate cancer with radioactive seeds and continued stone lithotripsy on Fridays. Dr. Troxel asked how much longer I expected to work. Given my knowledge of the natural progression of amyloidosis I said I figured to work two more years assuming by then things would have worsened.

The future had a different plan for me.

I continued my chemo. Slowly, I better adapted to the predictable outcomes of my drugs and their side effects seemed less onerous. My disease responded better than expected as the treatment repelled and tamed my bad clones. The tiger remained, but was now quietly curled in the corner just barely out of sight.

Just over two months ago Barbie observed that I hadn't been sick for a long time. I realized that she was right. She added that maybe I should consider going back to work, not only in extending my work hours, but also to take on full duty responsibilities. As such, I would do many more of the types of surgeries that I was trained to do. This would also include call. There have been many times in our marriage when Barbie will suggest something that would completely change the course of where I thought we were going and immediately I know that she is right. It was time to eschew the safety net of disability and move forward with the goal to continue working until I am old enough to retire, just like everyone else does.

Today was that day. I began the first day of my new old life as just a regular urologist working with my partners again to take care of whomever needs our care. It was wonderful. The patients I met today will be my patients for a long time. I truly have no idea of how long I will live nor do I think about it much. I have returned to the masses who live in blissful ignorance of their own mortality. It's a wonderful neighborhood.

How many times have I used the lesson of the importance of accepting the new normal unaware that my old normal lay in the unseen reaches where time takes us all. When the new normal becomes the old normal it uncovers the magnificent adventure that it is to fall forward into the unknown we call future.

"Ten years? Sounds like someone is bargaining with God." Dr Schier had told me.
We are still on good terms.

Kevin

Novato: Edified in 6 Edifices of Essential Education

Two weeks ago I hurried home after holding our new grandson, Jamison, so that I could return to my hometown of Novato, CA to speak at my old high school. As an ambassador for the California Transplant Donor Network I have the opportunity to encourage students to choose life and become organ donors when they get their driver's license. I was extremely excited as I had not visited my high school since I graduated in 1976. The evening prior an article about my visit appeared in the local 'paper' The Novato Patch (see article here) Early Wednesday morning on the August 28 I mistakenly left at 4:00 am as my alarm clock was an hour early. As such, I arrived in Novato two hours early. I decided to tour the places representing my youth.

Calle Paseo House age 4-11

Loma Verde Elementary

Corte Alta house (moved in when sibling # 9 was born)
Age 12-19

San Jose Junior High

Novato High

Novato LDS Church

I spent 87% of my life from age four to 16 in these buildings and therein learned most of the precepts and values that shaped who I am and what I could become. I had some amazing teachers. Mr. McNern, my third grade teacher, not only taught me extraordinary new ideas in math, geography, world studies and linguistics, he supported my fragile ego just when I first learned that I was poorly coordinated in sports and therefore de facto unpopular. When I said that I wanted to be president of the United States he completely believed in me.

The man who taught me algebra in 8th grade was Mr. Orth and he was very cool for an old man. Recently, his neighbor came to see me for treatment of his prostate cancer and sent me Mr Orth's phone number with an invitation to call. Mr. Orth's octogenarian voice answered with youthful effervescence still intoned. "Kevin Anderson," he mused. "Weren't you that sandy haired Mormon boy from a large family?" "That's me." I chucked. What a simplistic description my young life.

I thanked him for teaching me algebra and teaching me how to teach. I was later a T.A. for him.

I stopped by my church where I spent so many hours a week for 15 years. Oh the lessons I learned there: on keeping God's commandments, on studying scripture, on the duties of a priest, on learning how to ask a girl to dance, on tying knots that could save your life; or somebody else's.

Soon, however, it was time to go to Novato High. I had to walk by my old chemistry and pre-calculus classes. Mr Hicks and Mr Schrick respectively prepared me for college and medical school as they enlarged my understanding more than almost any other teacher until I met Dr Bradshaw my last year of college.

Nostalgia overload then gave way to the task of convincing two classes of new freshmen to check the organ donor box at the DMV. I told them my story of how I am here because of Shane, my heart donor. I sensed understanding in their eyes as their numerous questions confirmed the seeds on conviction. It was my turn to teach in my old school.
The last two buildings were our homes. Dad taught us to work hard and how to treat others in society. He taught us to respect women. Mom answered my unending curiosity about everything. One day I asked, "Why do our memories begin around age three?" She thought for a minute and explained, "It is probably related to when we start speaking so that we can remember with words." That seemed so wise to me, it still does.

All of the buildings look mostly unchanged over 40 years. The trees were bigger. It was the people in them that had changed, just as the world outside did the same.

I am forever grateful for my teachers. What they taught me I taught to others; and so it goes on ad infinitum.

Novato was good to me.

Kevin

Between Birthdays

Thank you, Shane

I get to celebrate two birthdays. Friday, August 16, was my heart's 5th birthday while tomorrow, August 19, the rest of me will be 54. I feel great. No, I actually feel better than great, but I would need to invent a new word to describe that; .... I feel euphorolicious. ?? Maybe not, how about wonderpendous. Recently Barbie commented that for the last many months I haven't been sick. Reading between the lines I also understood her to say, "You are not as annoying as usual two days after Decadron." I took this not only as a complement, but also as an affirmation that things are working well. When asked by a friend why am I doing so well five years later I responded that I don't have any medical or logical explanation. I thank God for this.
Last week I went to Santa Clara for my biennial left heart catheterization and my semiannual right heart cath. (how are semi and bi different?) My coronary arteries are wide open. My cardiac index is 2.3 (normal), my right heart pressures are normal. My echocardiogram looks great with an E.F. of 65% (Very Good to Excellent). The heart biopsy showed No Evidence of Rejection (NER) and, the envelope please, no amyloid in my 5 year-old heart.
Barbie and I are so pleased at this news. We have incrementally increased our 10-year marital bond yield to a 40th anniversary. There is a lot of interest in that.
Today Barbie directed the choir for stake conference. She was magnicredible. The best two choral directors that I have ever sung for are Barbie and John Bringhurst; although I like Barbie a little better and she is nicer to look at. She has this gift of pulling beautiful music out of a choir of mixed experience and we all feel better having sung together under her direction.
I love how music expresses what words cannot convey. Maybe I should sing a song about how I feel now. But since I sing Tenor eleven notes off, I shall sing solo that no one hears me. Groan.

You've been a great audience

Kevin
(No, this was not written under the influence of steroids; this is really me.)

Hallelujah

I am a Christian. In first grade we were at recess one day. I was in line to climb the monkey bars. I had just dropped from the rings and landed wrong such that I came slamming down on the potato sized 'tan bark'; that's what we called it. The rip in the knees of my hand-me-down jeans (with double cuffs so that they fit) got even larger. No blood, so on to the next gravity testing device. The girl behind me asked what religion I was. I responded, "I am a Christian." Later, I understood that I was also a Mormon and was sub-categorized as to the type of Christian that I was. Later, in High School, I was ridiculed by teachers and students alike for being the wrong kind of Christian, or for believing in God at all. Through all this I felt in my heart that monikers don't matter. I always knew that God was there and that He loved me.
As Mormons we tend to express our faith quietly and feel our exhilaration inwardly. Our hallelujahs are in our hymns while our amens remain in our prayers. While in Connecticut, new members to our faith would often express their emotions in our meetings with the language to which they were accustom. Praise the Lord and Praise God would be loudly heard. I often wished that I had the courage to do the same. But my culture was different.
Today has been a really good day. My health score is 98.6. It started with a visit to a friend whose father miraculously recovered from a deadly brain cancer four years ago. But now it is coming back. We spoke of life and death, faith and hope, and ultimately we arrived at that unanswerable question, "why do some live while others die?" This is a hard question. Two soldiers in war: one dies one survives. Two teens in a car accident; two patients with the same disease. All were being prayed for. What does this mean to the faith of those praying? Why is it essential that we require cause and effect for all outcomes, whether good or bad? Then come the theological non sequiturs. "Why did God actively cause this death?" "Why did God passively allow this death?" and finally, "God is cruel, so I will reject Him." I truly do not understand these sentiments as they go against everything that I understand about this world and God. Bad things happen for both random and human controlled reasons. God understands and supports us thereby allowing us to then respond in a way that teaches us who we really are and what we are capable of. To do otherwise would rob us of our true purpose for existence. Yet, there are also times when we feel His influence leading us to miraculous moments. I do not now nor likely ever will understand why these outcome differences exist. I defer to His wisdom.
Then one day a few weeks ago I realized that I had it backwards. Death is not a curse, it is a blessing. Well, maybe not to the individual dying, rather to our world as a whole. Imagine, for a minute, a world in which there was no death. What would it be like? What defines a cancer cell? It is a cell that never dies; it is immortal. This would be fine if the cell was also perfect. On the contrary, these cells are corrupted. They do bad and unnatural things. It would be the same with immortal humans. They would remain selfish and vengeful. When the space and resources eventually ran low the stronger, more clever and cunning ones would subjugate and contain the rest for eternity. It would be hell on earth. Immortality only works with perfected souls.
In life we fulfill our purpose. In death we move on. It is the loved that remain who feel the pain. This may be why we choose not to talk about death; yet it is not a failure of faith rather its fulfillment.
Barbie commented this evening that she has noticed that my health has significantly improved over the last few months, even on chemotherapy. She is right. I feel wonderful most of the time. I tried to think of a reason why I am doing so well. My logic remained vacant. All I was left with was the strong feeling to consider God's continuing miracles in my life.

Praise God! Hallelujah! Amen and amen.

Kevin

NEOD001

Last Saturday I drove to the quarterly Northern California Amyloidosis support group held at the Walnut Creek Kaiser. It was wonderful to reconnect with so many friends and fellow patients. Charlesetta looks great after her bone marrow transplant. She's like me, first a heart then BMT. Dena had invited the chief science officer from Prothena to speak about their new drug in phase 1 clinical trials to target amyloidosis, NEOD001. THIS IS REALLY IMPORTANT. Never has a company targeted a drug to only treat amyloidosis. Most of our current drugs we borrow from the world of multiple myeloma. The main paradigm shift is that we can now focus, not just on the plasma cell, but rather the toxic light chain proteins themselves.

This is tricky. The light chain has two parts: The hypervariable region and the constant region. The hypervaiable region is like a snowflake; no two are alike. Concomitantly each patient's bad light chain is also different, likely arising from a random  mutation in this same region. As such, no one drug (antibody) could target them all. Additionally, if you designed the drug to attack the constant region, it would attack all of our antibodies, both the good, the bad and the ugly. Alas, how do we correct this conundrum? Aha! The cleverness of y'all. First you ask, "What is common to all misfolded light chains? Answer: they are misfolded. When normal good-guy antibodies correctly fold they hide, or physically cover a region that is common to all light chains. Misfolded bad light chains swing open, like a gate on a hinge and, Viola! the cryptic epitope is now exposed and visible. NEOD001 is an antibody that is designed and produced in manufactured cell cultures. It specifically targets this previously hidden amino-acid sequence, activates the immune response and the terminator arrives to clean up the mess. The toxic villains are neutralized and removed from both the serum and the tissues. The normal, good-guy antibodies are unaffected because this target sequence is still hidden deep inside; unavailable to the drug. Wow, what a concept.
One of our group members in currently in the study and shared that he seems to be doing just fine with no untoward effects. We thanked him for doing this for us.

This changes everything, if it works. 

Until now, I have always considered amyloidosis incurable. My current fight is not to be cured, but rather to shut down my plasma cells with drugs so that fewer light chains are floating around to attack my new heart. 

Now, by detoxifying the rogue light chains, it isn't exactly the definition of cure, but it feels the same. It is possible that we will stop using the term fatal with this disease. We will manage our disease and move on with our lives.

That would be nice

Kevin

P.S. I like that the Prothena logo looks like a gamma-globulin (antibody) designed to look like a "P"

The moment of ellipse

I have had more than a few people ask me recently, 'What does "The Middle of Infinity" mean?' Well, it has meant different things to me at different times. Because of this I often ask in return, "What does it mean to you? I have received many answers, most of which contain a common theme; something to do with being in the present moment. This definitely resonates with me. It is quite common to hear from almost all individuals that have experienced a 'mortality awareness event' to comment on how it changed their priorities and the perceptions of what is important in their lives. The little annoyances and pet peeves are cleared away like cobwebs and musky old drapery. The newly cleaned windows illuminate the saved soul and, for a time, they bask in the moment.
This is truly how I felt immediately when I woke up from the heart transplant. I was, and still am, a new man. The first blog that I wrote in my mind only two days later ended with the phrase, "Past regrets and future concerns have no place in the moment of presence. What I have learned from all of this is to cherish the present." Later, in a fictional story I penned called "Solids", Arthur, the protagonist, in a moment of epiphany realizes that, "The present is the gift we give ourselves."
For some reason I think elliptically and, as such, I also occasionally write in similar fashion. In our conversations, Barbie will say something which will cause me to think of something tangentially related, which will remind me of something else and so on. Five and a half thoughts and 3.791 seconds later I will begin verbalizing my new pondering; all previous frame of reference having completely evaporated. Barbie now has no idea of whom or what I am talking about. I often do this with words and phrases. Recently, at the produce market, I started bagging my groceries while the salesperson was still ringing me up. He jokingly commented that they would have to start paying me whereas I responded, "Well, it is the shortest distance between two points." It took him a second to realize that I was referring to economy of motion and economy of time. So what does any of this have to do with being present. (Now you know how Barbie feels.)
How long is a moment? Is it a zero dimensional point in the middle an infinite timeline lasting exactly 0.012 nanoseconds? For me a moment feels more like a focused connection during an event. As I recollect them I subdivide and compartmentalize them into my memory. When I remember getting married the moment that I cherished was not purely the few seconds when we were pronounced married, rather the moment began when I entered the room and ended when we left and my focus shifted. Some moments last seconds while others can go on for many minutes, even an hour. For me memories of moments occur in blocks of time. At least this is how I organize them. Somehow, now when I say cherish the moment I need to remind myself to cherish the uninterrupted focus. Then passively my mind shifts into elliptical gear and the train of thought is derailed. 
To cherish the moment means actively holding the focus on what matters most; the person present before you.
Over time it is easy to forget that epiphany manifest through salvation and fall into old habits. Then something beautiful is noticed, an amber and gold sunset, a baby grasps your finger, a hug from an old friend and the awe and wonder returns.

Kevin

Writing is Hard

Writing is hard. Writing a book is really hard. I mentioned to Barbie the other day that I believe that everyone has at least one book in them; the story of their own life. Some would write it as an autobiography while others would fictionalize it, as did Harper Lee with "To Kill a Mockingbird". What keeps everyone from writing a book? It's not easy. Well, it wasn't easy for me. I am sure that there are many writers that can sit down every day and bang out five to eight thousand words. The thinking part is easy. I wrote the book a hundred times in my mind. Yet the application of fingers (that is two index fingers) to keyboard has always been very difficult for me.
It took three years to write. And yet if I counted the number of days that I actually wrote it would be less than 50. When I switched from Revlimid to Velcade two years ago I suffered many new side effects. One of which was a lack of motivation. However, I could be guaranteed that at least one day a week that motivation would return. This occurred on Wednesday evenings when my high dose of steroids was in full force. This is when the hypomania portion of my drug induced bipolarity bubbles to the surface. However, the motivation produced is also accompanied by a certain degree of disinhibition which allows for a more soul-baring and uncensored writing.
My two greatest challenges in the process were first: how do I truly paint a picture with words that conveys the full emotional impact of the moment? And second: how do I fuse the retrospective narrative with the prospectively written blogs to maintain continuity while avoiding redundancy. In the latter, Barbie was immensely helpful. She read and re-read the manuscript offering invaluable input.
Then one day in January it was done. Writing is just the beginning. Now you have to get it published. Ten years ago I would have been at the mercy of literary agents and the big publishing houses. We now enter the world of self-publishing. In January I knew nothing of this world. It has now become my new hobby.
First yo go to the source of all useless knowledge (and some very useful knowledge: Google.) I found a book called A.P.E and downloaded it to Barbie's Kindle. It teaches the novice author how to Author, Publish and market (Entrepreneur) a book. I followed the steps, doubling back on certain blind pathways, and ultimately decided to have the book self published through CreateSpace, a subsidiary of Amazon. They provide a publish-on-demand service such that the physical book is only printed when someone orders it through Amazon. What a concept; no inventory.
First, though it had to be edited. When my editor, Sarah Bringhurst Familia, sent me revised manuscript, it was bleeding red on every page. Yet, as I clicked and accepted her changes, it became a real book.
Next was designing a cover. This was really fun. I found a website www.99design.com that, for $299, will create a contest where designers compete to build you the perfect cover. Ultimately I had 19 designers submit 64 designs. The last day of the contest Barbie called me to say a new design came in that was awesome. I immediately knew that this as yet anonymous designer had captured my vision and that we had found our cover. In the end it was a graphic design professor from the University of Viterbo, near Rome, Italy, that one the $200 prize. The longest process was the internal book design done by CreateSpace to format the interior. And now it is done.
I have learned so much in that last six months about writing and publishing. We live in a world where so much more is available to us because of the internet. Seemingly impossible things are not just possible, but relatively easy. No one needs to forgo their dreams anymore. You just need to know what question to ask and to whom.
The book is now out there; for some I hope that they may find in it comfort and hope in their struggles. For others, I just hope it is a good story. For me it is a testament to miracles.

Kevin

Bashir's Invitation

Recently, Barbie and some of the family and I travelled to Southern Spain to the Costa del Sol in Andalucia. I was stunned at the beauty of the mountainous terrain as it descended into the beautiful Mediterranean Sea. The waters of 'Middle Earth' are met with numerous small towns; each with their own unique charm, Estepona, San Pedro de la Alcantara and the hermosisimo, Marbella. We thoroughly enjoyed our daily excursions as we met people who were welcoming and kind to us. I love the Spanish accent. It sounded so clear in my Argentine ears.
I had a goal to claim Africa as a continent that I had set foot in. We were close enough to see the mountains of Morocco in Northern Africa while sitting on the couch in our villa at the Marriott. To get to Morocco was actually quite simple. We drove 45 minutes to Tarifa, a small town just past the Rock of Gibraltar. Tarifa forms the corner between the Atlantic and the Mediterranean. A fast ferry then carried us to Tangiers for the day.
Our tour guide met us at the dock (If you go to Tangiers on FRS, get the tour. It's cheaper and a much better way to see the city than walking.) He introduced himself as Bashir in English that was quite understandable. He seemed quite laid-back and unaffected. I liked him. He could so easily engage in such casual banter that I could envision visiting with him over a ceviche tostada sitting on the sea wall of the Pacific Beach boardwalk in San Diego.
He described the city as we drove in and around it. Eventually he took us to the open market in Medina and finally to the Casba for lunch. While walking he made reference to the Moroccan flag with its five-pointed star, each point representing the five pillars of Islam. As he later described the minarets and the call to prayer five times a day, I asked if the frequency was also connected to the five pillars. He did not know if they were correlated.

After lunch, we were requisitely funneled through the shops of hard-sell vendors of rugs and spices. (These likely subsidised the lower cost of our ferry tariffs.) Finally, we were back on the streets of the Casba, mercilessly hounded by street vendors that would follow me for blocks.

Trying to escape, I walked down to a mosque decorated with geometric green and white tiles. Somehow I instinctively knew not to enter. I stood at the door gazing in. In a moment Bashir was next to me. As I turned toward him, his face got very close to mine and with all seriousness he said, "you seem to be a very wise man." I didn't know what to say. Then he continued, "do you want to go to hell or to heaven?" I answered, "To heaven, of course." He then proceeded to urgently invite me to study Islam. He reasoned that he could not stand before Allah at judgment day and admit that he did not share the truth with me when he had the chance. It was deja vu. This was a rationale that I had also used when teaching Christ's Gospel in Argentina. We then engaged in an absolutely lovely discussion about our beliefs in one God. He said that Muhammad's message was not just for Islam, but for the entire world. He said that Jesus was also a prophet. I said that, for, me Jesus is the Son of God and that his teachings were for all people as well.
Was I offended at his invitation? Not at all. I was honored that he saw in me someone who could listen openly to something that he cherished. I was struck that our differences paled in comparison to what we held in common. We both have the same goals. Live honorably by studying what we are taught in our scriptures that we may return to a loving God.
I thanked him as he left us at the dock to again return to Spain; to Europe. As I sat on the ferry I reflected on the courage he had to share with me his faith. And then I thought, when you value something so much, why would you not share it?
I learned much from Bashir that day.

Kevin