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