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.

Kevin

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?!"

Kevin

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.

Kevin

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

Kevin

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)

Bathroom

Before, Note the painted ducts

After

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

Before

After

View from door

                                                                       

Before

After

Bedroom

Before

After

Kitchen 

Before

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.

Kevin

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.

Kevin

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.

Thanks,

Kevin

kray0819@gmail.com

The Violinist and the Bagpiper in the Garden of the Gods

Recently my daughter, Rebecca, posted a blog about a trip they took in Colorado to visit a place called the Garden of the Gods and related an unusual story that seemed slightly surreal. It sounded to me like a fable that needed an ending; so I wrote one.

The actual event is described in her blog at:
http://rebeccawithanr.blogspot.com/2012/09/rocks-and-things.html

After reading it I wrote Rebecca the following fable.

The Violinist and the Bagpiper in the Garden of the Gods

Written for Rebecca

September 16, 2012

By

Her Dad

From his bed the violinist could see the fire on the mountain. The first rays of the morning broke through his window; hues of pink, orange and grey reflecting on the walls. Standing he saw mountains of clouds forming above the canyon; the Garden of the Gods had awoken and was hungry.

For millennia the people of the valley revered and feared the canyon. Sometimes its incomprehensible power would interrupt their slumber with lights and thundering, followed by torrents that would scatter them like ants. They called it the Garden of the Gods because of its matchless beauty and unpredictable power that seemed to watch over them while reminding them of their place.

Many spoke of the canyon as alive and aware, as it would occasionally answer the errant wanderer who dared enter its walls with deeply spoken mysteries. But the violinist knew of no one during his lifetime to witness such an event. This morning, however, it seemed that the Garden of the Gods had spoken and, in so doing, awoken something in him. A power beyond himself drew him away from his chores; he quickly dressed in his best tunic, silently picked up his violin and bow and began his journey.

The fire in the sky shifted and swirled in waves of color and clouds as the sun rose over the peaks. After three hours the walls grew tall around him as he ascended up the canyon floor. The beauty surrounding him was staggering. The layered walls of rock revealed so many textures and hues, all flowing together as if they were notes on a staff. Wildflowers carpeted the path before him. There were so many unique blossoms that he had never before seen. Looking straight up, the clouds were in continuous motion; churning as caldron of boiling mutton. Everything was alive. He saw a small outcropping of rock just ahead and decided to rest there. As he gazed back down the valley he could barely make out his small village. The normal hectic pace of everyday life among his neighbors seemed so banal from this vantage point. His current surroundings filled him with awe. Automatically his violin found its place under his chin and the bow touched the strings. He answered back.

He closed his eyes and sent his poem into the Garden. The notes swelled as they rose against the hard walls; amplified by the receiver. The violinist continued for some time and then the sound faded as one final pull sounded the amen. Silence, beautiful silence as the last note was swallowed into the Garden of the Gods.

He opened his eyes. Above him the clouds were as still as a painting. Suddenly, he felt something; a vibration. He tried to figure out from whence it came; but it came from everywhere. And then he heard it. Like low thunder in the distance rolling fast towards you. As it increased in volume he thought that he heard a pattern. Beginning like tympani in an orchestra; a beat, a rhythm. The canyon walls repeated the harmonics as if each corner; each crevice had been tuned like a fine instrument. The thundering response was so loud that it would normal be deafening, but somehow the reflection and echo were pitch perfect and ultimately pleasant as nature marked its approval. The violinist was enraptured and lost in the moment when suddenly the air was assaulted with an ugly noise that broke the chord.

A high achromatic whine filled his ears with mud. He looked around seeing nothing. The noise continued in a feeble attempt to mock the melody that the violinist had just created moments earlier. Then he saw him, a wiry young man with a sneer on his face and a bagpipe under his arm perched high above him on a small ledge on the face of the cliff. The man had stopped playing for a moment and was merely laughing at him. The bagpiper somehow enjoyed stealing the beauty from the garden. Frustrated, the violinist began again. His new song, although quite nice, did not carry the majesty of his first. Just as abruptly, the bagpiper filled the air with an awful din of noise and squeaks to overpower the violinist. He made no effort to use his instrument for pleasure, rather to abuse it for sport.

As the sounds echoed up into the Garden, the canyon responded with a wail of subterranean tones which denied its inherent harmonies. No matter how the violinist tried, he could not surmount the bagpiper’s mockery nor the canyon’s response. Finally, he could stand no more and escaped the ugliness as he ran out to the valley below. After a while the moanings from behind him became no more than a sound of wind and he slowed to a walk. Soon, however, his frustration abated as he thought of the majesty that he had witnessed and that would always be his. A simple thought then comforted him. “Tomorrow is another day and I can begin anew.”

The bagpiper laughed as he saw the violinist run from below him. His sardonic scream filled the canyon as he said, “I don’t have to be better, just louder,” and laughed. To show his new found bravado, he adjusted the mouthpiece of his bagpipe and created a cacophony so ugly that dragonflies fell to the ground and all of the white wildflowers turned brown.

He felt it before he heard it. An angry rumbling rolled off the top of the mountains and spilled into the canyon. Bereft of harmonics, the amplitude increased as it approached him, the Garden responded with claps of thundering so loud that the air visibly shook. The pain in the bagpiper’s ears was unbearable. He dropped his bagpipe to cover his ears but the sound rattled his bones. There was no escape. Just as he was about to climb down from his ledge to run away, the Garden of the Gods let out one final burst that felt like the earth tearing apart. Suddenly, the bagpiper felt no ledge beneath him. The gravity of the situation had caught up with him as the earth pulled him, and the fractured rocks that had been his support, to the canyon floor below.

Finally, silence. He could see nothing in all of the dust. He gasped for air. Many minutes later the dust began to settle. His broken bagpipe lay yards away from him. He tried to move but failed. As he looked down he saw the boulders that were holding him. He was trapped. He yelled. Maybe the violinist was still nearby and would come back. He yelled and yelled until his voice quit and again, there was only silence. Broken, he cried. But even his tears refused to moisten his face.

And there he remained silenced and trapped in the Garden of the Gods.

All fables must have their moral, and so it is with the violinist and the bagpiper in the Garden of the Gods:

Beware that you don’t steal another’s thunder and be crushed by the weight of your own hubris.