Work goes on

I got home today to hear that Rebecca and Jason are on their way to California. After her internship in Chicago, they returned to Utah for Jason to begin his semester at UVU. Since it is a long weekend, they decided to make it longer by driving two 10 hour trips in 4 days. But, of course, Northern Nevada is 43% more beautiful this time of year. I have done that trip so often that I have started to name the tumbleweeds along the way. It will be great to have them here with us for a few days.
Work has been extra busy the last two weeks. Generally, I work three days a week. But recently I have been working on my off days. This is my choice, however, because we are essentially revising the schedules of all of our doctors to adapt to a completely new way of caring for patients. Over the past two years we have reduced the time it takes to see a specialist from 14 days to 10 days and now to one day. This is not just us, but all of the specialties at Kaiser in Northern California. Two of the ways we do this is to daily carry a phone, that when called by any primary care doctor, will be immediately answered by a urologist. That means that while you are sitting in you doctors office, you can get an on-the-spot opinion from the specialist. Second, we now offer patient telephone consult to replace their initial visit for certain diagnoses. Thus, the patient's first actual visit is for the procedure they need. It saves the patient from missing work and paying for the initial visit to come in to discuss the pending procedure. It's a wonderful idea, but can be a scheduling labyrinth to line up the doctors and the patients from all over Sacramento to have their consultations within 24 hours. Anyway, I lay awake at night trying to figure out how to keep 57 moving parts to align in harmony. Currently, the brass section is still cacophonous.
Last week I informed my leaders that I will step down as chief of the department next year. (Not because of the above, I am very excited about the way we are revolutionizing medicine). Rather, I now realize that my chemotherapy schedule will go on indefinitely and there are times when I am, well how do I say it... sick. This is a very difficult decision, as I truly enjoy the challenges associated with this responsibility. I am amazed at how supportive and patient everyone has been. I feel if I worked anywhere else, the would see only my limits and liabilities.
Notwithstanding, I plan on working as long as I can.

Kevin

Birthday Boys

Parker and Me

Thursday Parker and I celebrated birthdays. Yes, I share my birthday with our dog. I turned 51 and he turned 12. Two years ago, the day after the heart transplant, Barbie asked what I wanted for my birthday. "I already got it," I said referring to my new heart. Last year again she asked and without skipping a beat I asked for only one thing, another birthday. I had to wait a whole year for the present. It arrived on Thursday morning at 12:00:01 A.M. (I was awake as it was my Decadron day). It may be boring, but I just can't imagine a better gift than to be present for another year. Even so, it was a bittersweet day. Barbie and I enjoyed the day together. We went to the temple in the morning, took a hike to Hidden Falls in the afternoon and had friends over for cake and ice cream that night. However, Parker could not get up all day. This was the third day that he could not walk. He would cry to go outside and we would need to carry him over the threshold. Labradors tend to have hip problems and he has be slowing down for over a year. They are stoic, but it was clear he was suffering. Barbie and I talked it over with Caitlin and we knew it was time. It is a really hard decision to say goodbye to a pet that has been with the family for 12 years. Parker's sole desire was to be near us all of the time.
Friday morning, as I left for work, Parker was on the kitchen floor. When he saw me he lifted his head and began wagging his tail. I leaned down and patted his head as I said Goodbye. It was a really hard day at work. I had eight cases and felt physically and emotionally drained. I couldn't talk about it. It just hurt too much. Barbie and Caitlin took him to the vet. He reassured them that we were doing the right thing.
Today the house just feels different. Even though you knew this day would eventually come; nothing can quite prepare you for it. He will be missed.

Kevin

Two Years Later

Today is a wonderful culmination of both the last week and the last two years. We home returned last evening having done the 2000 mile circuit through the West. Last Sunday, we left for the Grand Canyon North Rim at which we spent three days. Our cabin was situated such that either window (on the left or right) had a view of the canyon. This was not an occasion to find the beauty in every day; rather every 15 minutes as the light, clouds and breeze changed, a whole new scene of consummate sereneness would fill the senses. We snapped 100s of photos knowing that not a single one could come close to the majesty of a single gaze present on the rim of such a creation.
Samuel and Michelle joined Caitlin, Barbie and me as we explored on foot, by car and on mules. I know my limitations and I knew climbing back to the rim after descending 1800 vertical feet into the canyon would be better accomplished on the back of a mule. However, my mule, Fred, had a penchant for walking to the edge of the trail with his head hanging over the cliff and his hooves 4 inches away from oblivion. I was left to trust his experience and sure-footedness.
Barbie had a mission to photograph all of the varied wildflowers she could find. As I waited under a grove of quaking aspens, the only sound was the rustling of the winds through the leaves. The canopy flickered like silver-green coins falling from the sky (Michelle's metaphor) and I thought, "There must be at least 10 words to describe this experience." Unfortunately, the language containing such descriptors does not yet exist. I would need a single word that both invokes the simultaneous perception of four senses while capturing the rapture exerted upon the soul by its witness. In English peacefulness is a good word.
Thursday we travelled north to see Jeremy and Alexandria who now live near Salt Lake City and on Saturday attended the wedding of my niece, Michelle.
All of the above mentioned experiences would not have been possible were it not for the tragic loss and subsequent sacrifice of Shane and his family. My thoughts are with him, his parents and sister. I am humbled to know that this difficult experience for them has allowed me to experience so much. It was two years ago today that his shared heart became part of me; allowing my eyes to see, my hands to serve and my memory to rejoice in such a gift of life. I again would appeal to that same yet to be discovered language to convey my overwhelming sense of gratitude to those that have saved my life through faith and science, but, alas, it may only be that those who see the light of hope in my eyes will sense what cannot be uttered.
Two years ago, as I lay in the hospital recovering, I thought of all of the places I have been in my life. "I have travelled the world," I thought, "But I have never been to the Grand Canyon, a great symbol of America's beauty." I made it my goal to visit as soon as I could. At my 2nd annual heart biopsy, the nurse practitioner said that I shouldn't travel above 3000 feet without acclimating. Here I was, hiking up a hill at 9000 feet with Caitlin at my side. As we approached the top of a particularly steep incline I commented, "I can't believe I did this." Fours seconds and 13 rapids breaths later I continued, "I can't believe I did this well!"

Kevin

Peak Performance

How time flies when you are having fun. Two weeks ago I was driving home from the lab and called Barbie to see if she wanted to take off to drive to Mount Lassen. This is a national park with a dormant volcano at its center. We had not been there in years and we took off for the three hour drive north. It was one of those gorgeous days with perfect whether. We drove to 8000 feet, which is the base of the trail to the peak which is over 10,000 feet. Barbie wanted to go for a hike. I figured I might make it to the corner of the 1st switch-back. I huffed and puffed and finally reached it. She wanted to try one more. Needless to say, with each new turn, I felt renewed energy and soon we were half way to the peak. It was a glorious feeling to gaze over the horizon at 9000 feet. I surprised myself to discover that I could still hike a mountain, especially at that altitude. I had to at least have a health score of 96 to get that high.
That weekend I also learned that two people I know with amyloidosis received transplants. Kathy got a new liver (she has familial amyloidosis) and Vince got a new heart. His presentation was identical to mine and I knew without a heart he probably wouldn't survive for very long. Both are now home and doing well. Of all the amyloidosis patients that need heart transplants, only 10% ultimately get one. I am so excited for them both.
Caitlin finally returned home from Europe on Tuesday. She had a wonderful time, but Barbie and I realized we are not ready to be empty-nesters.
I have never been to the Grand Canyon; this is on my bucket-list. Sunday we will leave to spend three days on the North Rim at the Grand Canyon lodge and take a mule ride down into the canyon.
I went to my 2nd annual transplant appointment and my biopsy showed 1R/1A which is mild rejection. Otherwise everything looks great. I also followed up at Stanford with Dr Schrier and Dr Arai. It is clear that my response to Revlimid is dose dependent so we will try alternating 10 and 5 mg every other day and check an Allomap blood test in 3 weeks to see if it causes worsening heart rejection. With amyloidosis, there is no one right answer for every patient. One must be flexible and take calculated risks.

Kevin

The other side of sacrifice

If I were to guess my health score today it would be... Wait, I don't have to guess, it is whatever I say it is. Today I am a 92. This is the 4th day in a row that I have been a 92. I find that quite nice.  As recent as Monday the 21st of June I was a paltry 62. They was a rough day in the operating room. When I am above 90 I wouldn't even know that I was ever sick without referring to my medical records (although twice daily my medicine holders indicate something is amiss) This is life off chemo.
When I was young, I was taught that sacrifice means giving up something you really want today for a reward of great value later. I have personally practiced this principle since I was eight and became a Christian. My teachers were right.
I can imagine someone out there contemplating whether they should have a heart transplant, or maybe even considering a bone marrow transplant. Others might recoil at the idea of what they would have to give up by getting chemotherapy. In each situation you give up something today (feeling well, not feeling pain) with the hope of something better, i.e - a future. Well, today is the other side of sacrifice. Is it worth it? Absolutely! Yes, I know that next month when I get my chemo again, I'll be sick. But, if that means more days like today, bring it on.
For those of you who are generally healthy, this is what you feel like every day. PPPLLLEASE enjoy it!
Let go and soak it all in. Smile at everyone and have fun. Just because you are sixty doesn't mean you can't still run through the sprinkler.
Can you let go of something you really want for the hope of something greater?

Kevin

My Mentor

Dr. Clayman

Last weekend we travelled to Irvine, California to attend a fund-raiser and surprise party for Ralph V. Clayman, M.D., the dean of the medical school at University of California, Irvine and my mentor. I had the privilege of being a fellow with Dr. Clayman at Washington University in St. Louis from 1992 to 1993. That experience changed my life. Ralph is the most extraordinary person I have ever known. What he has accomplished goes beyond what most celebrities or politicians can ever hope to achieve. He has the unique capacity to inspire in others greatness beyond their natural capacity. Before I met him, I did not know how to write. For him, if it can be dreamed, it can become reality. But he doesn't do it alone. Among his accomplishments, he was the first surgeon to remove a solid organ; a kidney, laparoscopically. That would be like using chopsticks to cut a T-Bone steak and remove it through a keyhole. However, unlike most brilliant inventors, he included and credited as many people as possible, such that he taught 100's of doctors who then went worldwide to teach thousands of other doctors that could then save and improve the lives of millions.
And yet, when you meet him, you feel like you are the most important person in that moment. Barbie and I were invited by his wife Carol to a brunch at their home in Irvine. We haven't seen them in eight years and, as we visited, my memory was flooded with the past experiences and morsels of wisdom that he had given to me. Without my year with Ralph, I would never have been hired at Yale. It was a difficult year. I felt like I was running in front of a locomotive and feared that tripping would find me run over. However, when I finished, no one was more supportive of my career than Dr. Clayman.
I have met men that, when I ask them if they have ever had a mentor, they respond, "No." I find this very sad. For these individuals can never become more than that of which they are personally capable. A mentor can see talents in you that you did not know even existed. You can't hire a mentor; but if your personal pride blinds you to their presence in your life, then you are lost to mediocrity. Just pray that divine providence will place them in your path and, when you meet them, stop and listen.

Kevin

Life-Plan

Yesterday I attended an noon conference at work and to my surprise found it very difficult to remain seated for the duration of the meeting. Dr Shelly Garone was the speaker. She is the director of palliative care for Kaiser in the Sacramento area and is an expert in dealing with and teaching about end of life issues. Five years ago she taught a two day seminar, required by California law, on death, dying and managing pain. She asked the question "How would you like to die," and gave options followed by a show of hands. In a room of 150 physicians, I was the only one who chose to die of cancer. This caught her attention. I responded describing how my father had recently died of cancer, and even though it was painful, he died at home with his mental faculties intact until the end. This was what I wanted. Well, I didn't 'technically' get cancer, but the end result will be the same; or so I thought.
This has been a difficult year for we members of the Northern California Amyloidosis support group. A significant number of us have died in the last few months. I always thought that I would die like most cancer patients; of malnutrition possibly coupled with a fatal infection. However, it seems that these amyloidosis patients may have gone a different route. I do not know all of the details but there seems to be a common pathway that includes dangerously low blood pressure with falls, strokes and probable fatal arrhythmias. But none of them had had heart transplants. I guess I won't really know how I will die until just before I do; like everyone else. (As long as it is not drowning)
Dr Garone taught that palliative care is not hospice care. It begins whenever it is needed in order to help a patient and a family develop a life-plan (as opposed to a death plan) and may occurs years before the inevitability of death. When she spoke of life-plan, I lost it. It was all that I could do to contain myself from sobbing uncontrollably out loud, in a room full of doctors gobbling down there Chicken Parmesan. I thought to myself, "I review my life plan every day."
For the first year and a half of my diagnosis, my disease and prognosis were ever present in my consciousness. Since January of this year that has changed. I now expect to live forever just like everyone else and I plan accordingly. I am not in denial as the former awareness now resides approximately 18.7 milliseconds below my consciousness and can surface at any time. "Why today?'" I thought, "Oh it must be the steroids, today is Wednesday." But what she said really struck a nerve and memories begin to flood my brain. Everything she put in her PowerPoint, I knew. I had lived though every bullet point. Did I need to make an appointment for a palliative care consultation? One of the things that I love about Kaiser is that we don't just care for the whole patient. We also take care of the family.
I do have a life plan. To me my first goal is to keep my family secure; physically, emotionally, financially and spiritually. Once that is done, any excess left over I want to use to fill my senses with new experiences. I want to see as many of natures innumerable beauties as I can. I want to feel sand between my toes. And food; well, the world's greatest chemist cannot describe a molecule with the unique delicacy of a single taste bud. I relish the sense of smell and the persistence of memory that it evokes. The sounds of music, birds, wind in the trees, rain on a tent, the sweetest voice I have ever heard when Barbie says "Hi honey, how was your day?" My life plan is to go as many places, meet as many people and experience all of the diverse beauty of life as my lame body will allow.
I think about it every day.

Kevin

On the Road

Pikes Peak

My body has to go where my itinerary takes it. Since the wedding, we have been quite busy. Last weekend Barbie and I attended the AUA (American Urologic Association) meeting in San Francisco. It has been six years since I have attended a medical convention. It was wonderful to reconnect with friends and colleagues that I haven't seen in years. We stayed at the Hotel Nikko and Barbie caught up on a years worth of shopping that has eluded her while she has been overwhelmed with school. We sampled the best ice cream (Mitchells) and the best chocolate (TCHO) in San Francisco. Back for one and a half days to do surgery and get chemotherapy; then off to Denver for the itinerant wedding party. In the third and final installment of this perpetual celebration, we were guests of Jason's parents, Bob and Pam Hammond. Rebecca has truly married into a wonderful family.
To introduce us to the mile high city, we climbed (in a car) another 10,000 feet to admire America the Beautiful from atop Pikes Peak. I generally get anoxic atop a 6 foot ladder, let alone gasping for oxygen molecules at 14,110 feet. The deep blue azure sky overhanging an unobstructed view for hundreds of miles in all directions was to inspire awe. As we searched the far reaching horizons of space, I thought of Rebecca and Jason as they break forth together toward their horizons of time. The opportunities seem limitless. The next day they continued their eastward journey to Chicago where Rebecca will begin her summer internship in advertising.
The reception in Highland Ranch was beautiful and, as an added bonus, we were able to visit with Barbie's Aunt Renie and her husband Ed. We were also thrilled to see the Fluckigers from Connecticut, who now live in Parker, Colorado.
The timing of the chemotherapy on Thursday was inconvenient and I had to frequently sit down, but life doesn't wait.
The race isn't over yet; two more weddings this week, a family reunion next week and on it goes. I wouldn't have it any other way.

Kevin

This is a link to the wedding photos for those who are addicted to smiles:
Wedding Photos