Tuesday, December 17, 2013


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.


Wednesday, November 13, 2013

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.


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.


Thursday, October 3, 2013

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.


Thursday, September 12, 2013

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.


Sunday, August 18, 2013

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

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

Thursday, August 8, 2013


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.


Thursday, August 1, 2013


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

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

Thursday, July 25, 2013

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.


Thursday, July 18, 2013

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.


Wednesday, June 26, 2013

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.


Thursday, May 23, 2013

Hard Questions -- Good Questions

Social media allows for the interactive dissemination of information without boundaries. The possibilities then extend beyond the limits of  our personal understanding and credulity.  One must just find the right question.
For many years two questions have plagued me. Both relate to the process and results of a stem cell transplant (SCT) or to as it is sometimes referred, a bone marrow transplant. I have read numerous scientific articles describing the outcomes of SCT for AL amyloidosis but found that many of the reports did not differentiate the survival rates, or even include data regarding how many patients, and for how long, were spared the need of continued use of  chemotherapy after their treatment.
Since my SCT failed, (at least based on my blood tests that immediately showed not only no decrease in my light chain levels, but rather a doubling of those bothersome proteins,)  I was also keen to understand why at the cellular level.
I have learned that often the best source of discovery regarding a rare disease is from the people that live with it every day. So I went to that repository of combined life experience and wisdom, the patients. In the past I had joined an online amyloidosis support group and recently felt to reconnect there. As I began to read many of the comments, old personal questions began to resurface. Finally today I wrote the following.

There are two questions to which I wish I knew the answers. First, does a SCT fail because the Melphalan fails to kill all of the plasma cell clones in the bone marrow? Or is it that survivable clones are re-implanted with the stem cells? Second, my goal for stem cell transplant was to be free of chemo for at least two years. (I don't like taking dexamethasone.) What percentage of patients that have a SCT remain off chemo for at least two years? 

I was encouraged at the number and caring quality of the responses that I received. But three in particular had important insights that taught me things that I needed to learn.
First was from a man whose experience was  a major reason that I wrote the questions. I had met some amyloidosis patients that had complete responses from their SCT, they were successes, yet their oncologists still kept them on chemotherapy, just in case. Tim wrote the following.

I had an SCT in July of 2011 at xxxxxxxx xxxxxxxxx (had consults at mayo as well). I had VelDex as a front line treatment prior to  transplant and achieved near complete response after transplant. My doc wanted to see if we could get to complete response so we resumed VelDex in November of 2011 and continued treatment until June of 2012. I was getting really run down from chemo so voluntarily stopped after a consult at mayo where the specialist there said that they would not have treated at all and would have just waited to see. Flash forward nearly a year and my numbers remain stable and I'm hoping to be chemo free for at least a year. I feel good off the chemo teat and will be wary of getting pushed back on in the future.

Another woman described her story with the preface that she generally did not respond on the site because her story is 'discouraging'. Yet her story was my story. Her SCT failed and she remains on chemotherapy.  I felt connected with her and shared my hope that new treatments are already available and on the horizon. It is a good time to be alive.

But the one that affected me the most was from woman who also failed the SCT and her light chain levels remain elevated. But her doctors are not treating her with chemo. This is the question that Barbie and I have been asking for four years. Is the chemo adding days to my life? What would happen if I stopped it?
This woman, named Jan, offered the following after describing her numbers, which were my numbers; except that she is not on chemo.

But as someone said, we are all different. And for us as individuals, the
statistics are meaningless. We either had a response or not. We either need more
treatment or not.

I totally agree with you. I really would like to avoid chemo if I can. So far I
can...I live from 3 month check up to 3 month check up, always knowing it could
change. Hoping the best for you.

Ultimately, Muriel Finkel, the site administrator found the answers through her connections at the Mayo clinic.

To question 1: The SCT doesn't always kill all of the bad clones in the bone marrow.

To question 2: 80% of patients with a successful SCT remain off chemotherapy for at least two years.

This news was very encouraging to me. Generally, scientific studies speak of success in terms of overall survival (who's still alive at 5 years) and disease free progression (who has no evidence of disease progression at 5 years) These numbers refer to quantitative success. They often don't report on whether those patients were on adjuvant (or continued) chemotherapy, (qualitative success). This is what I want to know as this is what makes our days miserable while we wait to add to the survival statistics. Living a long time is great. Living a long time off chemo is outstanding.
So what's next? For now I will remain on chemo. But I am encouraged by those that have chosen a different path having asked these hard questions. Not with just their words, but with their minds and bodies.


Thursday, May 9, 2013

Where do we go from here?

The first week after receiving the diagnosis of amyloidosis is the most confusing. Everyone that knows you wants to help. Suddenly dozens of voices are offering advice and it is difficult to see which way to turn. These are good voices of people you trust and who care about you; but you just don't have all of the facts yet. Not to mention, you feel like crap.
The internet only makes it worse. Initially, you find sites that only speak in vague generalities and appear to be copy and pasted from some unknown literary progenitor. Finally, you find and abstract written in medical jargon that offers more details, but you cannot read the whole article unless you pay for it.
Your primary care doctor make an appointment with a hematologist/oncologist, but they have only had one prior amyloidosis patient in the last 18 years. Besides, how do you know what questions to ask them? It is a very confusing week. It was for me and I am a doctor.
My sister works with cancer patients and has vast experience with chemotherapy and bone marrow transplants. I told her that my Kaiser doctors had suggested that I go to the Mayo Clinic for my work-up. Her colleague, a professor at the University of Washington said, "No, he needs to go to Boston University, they are the best at treating amyloidosis." I felt torn. Do I go back and tell my doctors that they are wrong in their recommendation? Or do I trust them implicitly?
Finally, around week two - three a groundwork is laid. The smoke clears and you find your advocates. The doctors, nurses, social workers and caregivers who light the first part of the path so that you can move forward. A plan is proposed and it feels right. You take the first step.
Every amyloidosis patient has a story of their delay-in-diagnosis. Unfortunately, this is the rule, not the exception. It is an uncommon disease with common symptoms. It is not easy to diagnose. Someone has to think about it. Notwithstanding, once diagnosed, and properly verified. We need to forget past delays, miscommunications and annoyances and move forward. This need no longer be a fatal diagnosis, and to the doctors that recommend getting our affairs in order we could respond, "with all do respect, I suggest the same for you, doctor." Doctors are terrible at predicting when someone will die if it longer than a month.
Where you receive your care is an emotional decision affected by many factors: the burden of travel, family issues, work issues, money, cost of care, insurance coverage. These limitations are set against the understandable desire to get the best care that we can. It truly can be a matter of life and death. What I have learned as a physician, and now as a patient, is the power of the team. No one person can be at the top of their game 100% of the time. With a team, each person specializes in certain aspects of the process so fewer things are missed, Teams tend to use protocols and 'best practices'; learning from the successes of others. Teams are not necessary for all diagnoses, just the really complicated ones. Often these teams are referred to as centers of excellence. They are everywhere.
Amyloidosis centers of excellence are found throughout the country. Although, we all owe a great debt of gratitude to the pioneers in our diagnosis that have laid the groundwork, done the research and written the papers so that all can learn from their collective experience. The Mayo Clinic and Boston University and others, stand out as giants in this area. We owe them our lives. Those who find new treatments for multiple myeloma also help immensely as so many drugs that start there transfer to us.
All of this knowledge, available to all and administered through centers of excellence can truly assuage our anxiety such that we know that the place that we are at is the right one for us. This is not a time for doubt, but for trust.
I no longer consider my diagnosis fatal. Yes, I will die and yes, it will likely be from complications of amyloidosis. But I am still alive and I shouldn't be. Since each day is, for me, a gift, the need to live a long life is no longer the goal. Rather, the goal now is to learn every day and to give love through service every day. This is where we go from here and the journey continues.


Wednesday, May 1, 2013

Fruit Flies

Yesterday the operating room where I work suffered a four hour delay. Someone had left a bag of fruit in the break room over the weekend. A few fruit flies were seen nearby. However, when the bag was finally found and opened thousands of fruitflies escaped. (I see a metaphor here to gossip, but with a pillow and feathers; but I digress.) It was clear that it would take a few hours to clear out and sterilize the area. We were scheduled to do three radioactive seed implant cases for the treatment of prostate cancer.
Wanting to ascertain the status of our day, I hovered near the main office where a high level pow-wow was in progress. The head anesthesiologist was commenting on how cases using implants would need to be rescheduled because of their heightened need for absolute sterility. Still just outside the door, I commented to him, as an aside, that there existed no bacteria in creation  that could survive on our radioactive implants.

A moment later, finally inside the office and the conversation, the OR director looked at me and queried, "Now, Kevin, you guys are using implants, correct?" Clearly, wanting to make the distinction that we were safe I answered. "Yes, but bugs don't like radioactivity.
Without missing a beat he threw up his hands in a feigned sense of importance and exclaimed, "but what about Spiderman?!"


Tuesday, April 30, 2013

Dangerous Discovery

Definitely did discover dangerous delectables during a drop into Walmart. Depressed by dint of the demise of Ding Dongs I did delve the shelves of dubious duplications. I did detain a decoction developed by diametrically dismantled engineering. My dubiosity did develop into the done deed. Dollars donated. Their designation a deceptively devilish dessert.
Then I ate it.
The distinction differed to my delight. The denoted generic 'Ding Dongs' did define themselves deluxe at a discount. My disdain dissolved; as did the devilish delight.
This is dangerous.


Thursday, April 25, 2013

Small Victories-

Eagle River, Alaska
I looked on Yahoo news, but I didn't find it. I did find out that two celebrities were wearing the same dress at the same event and that another sports figure did something stupid. But there was no mention of the woman that called me on the phone today. She wanted to tell me that she had received a new heart and that she was a changed person. This is huge. She was going to die very soon and now she will not. I did not wonder why this was not big news in all of the major venues. She is not famous. She is just like the rest of us. And what a blessing that is.
I met her and her husband in February. She was an inpatient and was placed on the transplant list that very day. I was there for my semi-annual heart biopsy. She had heard of me and wanted to ask me some questions. She has primary AL amyloidosis and was in much worse condition that I had been prior to my new heart. But, she was initially afraid and did not want a heart transplant. Finally, with her doctors' urging and her husband's support, she acquiesced and agreed to go on the list. But she was still nervous. When Barbie and I entered her room she was surprised to see how healthy I looked. We answered her questions and named her fears such that they no longer lurked in the darkness of uncertainty. When we parted she was visibly relieved and increased in hope.
I knew from what she told me of her symptoms that without a heart transplant she would not be long for this world. I silently prayed that the heart would come soon. It did. Within a month I got word from her husband that she had an uneventful surgery and recovery. She had an early heart rejection, but this was reversed with ridiculously high doses of I.V. steroids (Solumedrol: nasty stuff) and has done well since.
She called me today to ask when she should be rechecked as to the status of her amyloidosis. We discussed this and her new side-effects. She spoke of a wicked 'Prograf' tremor (Prograf is the major anti-rejection medicine that we take everyday, forever.) This causes a bad 'intention' tremor. This type of tremor gets worse as the effort at fine motor movement increases. So when the spoon begins at the bowl, it is not that bad. However, when it finally reaches the lips it is like eating soup on a roller coaster during an earthquake with a magnitude of 7.2 on the Richter scale. It is messy. I reassured her that this would greatly improve in 9 - 12 months. I gave her suggestions on managing her light-headedness after sitting for long periods. Barbie and I reminisced on how we never knew what the cause of all of my early side-effects were and how it would have been nice to have someone to call. The doctors tried, but patients understand these thing better; we live through them every day.
It was amazing to hear her describe her new life. She is no longer short of breath; no more oxygen tanks. The defibrillator vest is gone. No more pain when eating. And the nasty swelling in the legs is gone. She now walks a mile a day. What a miracle.
This should be momentous news; such an amazing event. But it happens to regular folk every day all over the world.
Fame is a funny thing. Some people actually seek it, but they are always disappointed.They often proffer some salacious tidbit that immediately vaporizes into cyberspace as they remain unsatisfied. Fame is an empty promise. I define fame as when 51% of the people who have ever heard of you have never met you. I would rather be famous among 50; within a small group whose lives you have touched while becoming better for having met them, either physically or through our ever expanding virtual world.
In this group we know each other. We share our stories and listen and understand. We give hope to each other and enlighten the path for those that follow. In this group we are each enriched as we share our small victories


Wednesday, April 17, 2013

In My Father's House

We had the opportunity to purchase the house in which my father grew up. It is located two blocks from downtown Provo, Utah. Barbie and I fell in love with the house when we first saw it. It is a Craftsman Bungalow style built in 1927. But we also felt its history. My dad moved here when he was nine and lived there until he married my mom and moved to California. There is so much of the history of my ancestors that happened in this house. My first recorded memory (one attached to a fixed date) happened when we travelled to Utah for the funeral of my Grandmother in April of 1962. I was in the kitchen as I watched boiled oatmeal escape the saucepan and pour over the rim onto the stove. This frightened me.

Barbie and I traveled to Provo last week to see the basement that we had remodeled so that Caitlin and Ben could live downstairs while Samuel and Michelle reside in the main house. This was a long long-distant process and had its share of both minor bumps and major issues. We had excellent help through our friend and interior designer, Wendy Ormsby, and our contractor, Jeremy Brown of AllElectric Construction. We did our best to maintain a virtual presence through smart phones as we texted, sent photos and face-timed to oversee and hopefully not overlook the many details involved The result created one of the nicest basement apartments that I have seen in Provo. (A university town with its share of basements dungeons. I lived in one in 1980.)

I decided to include some before and after photos.

(Click to enlarge)


Before, Note the painted ducts

Two areas of the old basement not seen here in photos are the cinderblock coal room which was behind the water heater and originally stored coal for the first furnace in the house. This was removed and made room for the bathroom above. The old coal shoot was converted into the bathroom window. Additionally, there was a root cellar that ran the width of the back of the house behind the basement kitchen. This was excavated and finished to become the pantry off the kitchen, the laundry room and a back exit to the internal staircase to the main house. This staircase was required by Provo City in order to get a building permit and caused a large delay and a large cash infusion.

 Front Room



View from door





After, with view into pantry

We decided to create the basement that we would like to live in if we were young married BYU students.
I'm ready to go back to school.


Thursday, March 28, 2013

All Things Being Equal

I am fascinated with words, even more so with phrases. I wonder how they get crafted and adopted. All things are rarely equal. But it helps to attempt equality when deciding between things. Currently all things are going well, and yet they aren't. I am reminded of this in the blog post that Rebecca so courageously shared yesterday about dealing with a miscarriage. a-wretched-life
I am proud of Rebecca and Jason for their faith and perseverance. We so love our children and want them to be happy. But there will always be days that are sad.
I continue to do extremely well with my health. No changes of note. I still get Velcade weekly along with my Decadron. There are, however, some promising new drugs on the horizon that may change the course of my disease. I will keep you updated. Work is going well and I will be working with Kaiser to develop a video for patients newly diagnosed with prostate cancer. I wrote the script and will be in front of the camera. I'm trying to lose 10 lbs so that I look better on computer screens around Northern California.
Barbie has been working consistently in temporary positions as an RDH and is considering some more permanent options. She is a great hygienist.
We recently returned from a very romantic cruise to the eastern Caribbean. We visited Turks and Caicos, San Juan, Puerto Rico, St Thomas and a private island that Holland America owns called Half Moon Cay. We had such a relaxing week with 7 days of no cell phones, no Internet and no schedule. The sea was a beautiful clear turquoise, the water was warm and the few fish that we saw enough to say we snorkeled.

Half Moon Cay
The basement of the Provo house was finally finished and Caitlin and  Ben moved in on Monday. It is not a typical BYU basement apartment. Barbie's friend, Wendy Ormsby is an interior designer and, working with her contractor, Jeremy Brown, were able to take Barbie's vision and create a wonderful 'space'. Caitlin is delighted to have a little more room for her womb as she is now in her 17th week and wants to nest. Once I get the before and after shots of the basement, I'll post them.
With the book done and a grandchild on the way, my previous bucket list had officially expired. While watching the ocean from our stateroom balcony I penned a new one. It has some fun stuff like reading Dickens, learning French, doing a culinary experience in St Helena, CA and riding the Orient Express from Paris to Istanbul.
I hope to continue writing, both here on our blog and other places as well. Maybe if the prostate cancer video plays well, I might get a call from Kaiser Hollywood.


Thursday, January 17, 2013

Looking for help

It's been over a year now since I effectively stopped writing regularly in our blog. The reason I perportively gave at that time was because I was going to work on writing a book about this experience of a patient as a doctor. I haven't done a very effective job at doing either over the last year. As I reflect on my life at that time, I had just switched from Revlimid to Velcade to treat my disease. While Revlimid had more physical side effects, Velcade has produced more insidious psychological side effects. As a result, my motivation suffered. It is very difficult to write without motivation. It would briefly return on Wednesday evenings when the morning dose of Decadron produced a state of hypo-mania coupled with insomnia and mild dis-inhibition. (This is where I am tonight.) All of which can be useful for writing.
Yet I would occasionally force myself to sit and write in fits and spurts. As such, the book is now essentially written. I am now ready to free it from the solitary confinement of my mind (and a file on my desktop) to let others read it, and critique it. This is actually a scary proposition. That is why Barbie will read it first. I trust her. Over the last week I have been quite anxious about publishing it. What if people don't like it? What if they can't relate? Millions of books are written. Why does the world need another one? I tell myself that my only audience is that of my future grandchildren, and that helps me to keep going. Sometimes I think that I will share great, previously un-thought truths, some enlightened revelation to benefit humanity only to realize that there is nothing that I have ever thought, said or written that hasn't already occurred to some millions of other observant humans so many times over the last 10,000 years; and then I realize, "It's new to me, and is therefore of great value." "These are the lessons that I needed to learn."
Do we really need books anymore? Books take too long to read when we have social media. Of course there are blogs which represent the cyberspace union of narcissism and voyeurism. But given their wordiness, they might require a longer attention span. For those with medium attention spans there is Facebook. While those with limited attention, and prone to quick boredom, can opt for Twitter. For pre-schoolers there is Pinterest. (I like to look at the pictures.)
There are times when trying to describe the scope of a life requires more, and therefore more investment from the reader. I once heard, while attending a lecture on chaos theory, that in New York City there is only sufficient food on the island of Manhattan to last for three days. And yet, there is no master plan on how to get this food resupplied on a daily basis. It just happens. Any regular mathematical model would fail in trying to describe this so the problem is given to those who can speak in the terms of chaos theory.
Imagine that Manhattan is a book. Chapters would be found in SoHo, the Village, The Upper East Side, Time Square. The pages are made up of the restaurants in China Town, the penthouses near Columbus Circle and the Galleries in Chelsea. The words are us. We build the stories of the book everyday of our lives. But you couldn't truly read the Book of Manhattan if you never left Wall Street. You would have to take the Subway for a day at the Met; a stroll in Central Park. You would need to stand in Battery Park and gaze off at the Statue of Liberty. However, while you may get a feel for Manhattan, you could ever comprehend it all.
A single human life is more complex than all of Manhattan. Are lives are not as ordered and planned as we think they could be. Chaos is all around us and in us. It has been difficult for me to assemble even a year and a half of my life so that I can make literative sense to those that may read it. I struggle to tie strings of relevance with a knot at each critical turning point to guide the unfamiliar along this foreign path. My only tools are memories and words; woefully inadequate. There are passages of my own prose that are torture for me to read as they rekindle painful memories that are immediately real. And yet I know that my failing as a writer can never convey that same visual memory burned in my brain. So why bother.
My hope comes from the reader. They will subconsciously recognize my gaps in narrative and fill them seamlessly with their own imagination, experiences and intuition. Our common human wisdom may serve to save this endeavor. This gives me some hope. My story, in a way, becomes their story in the sharing.
Once Barbie, and a few others, read this and it is finally done. I have no idea how to publish it. Or how to even start. I have heard that I could put it as an E-Book on Amazon. I don't know. If anyone has any good suggestions. Please let me know.