One step at a time

Stairway to Heaven



Only 962 steps to go





Beauties of Nature





There's always room at the top

 Definitions

Tenacity:  The personal drive to achieve a specific task or goal that has perceived value to the individual despite physical or logistical barriers. May be tempered or abandoned if the risks exceed the value; often at the behest of cooler minds

Not to be confused with--

Stubbornness: The inability or refusal to alter one's stance or path of action, once taken, regardless of physical, emotional or economic risk to the individual and those affected.

Yes, I am mostly the former, and usually not the latter. Tuesday Barbie and I went to Santa Clara to get my heart biopsy. This resulted from a blood test that indicated I might be in heart rejection. Rejection is determined by the pathologist at Stanford as he reviews 5-7 tiny pieces of heart muscle ripped from the interventricular septum of my heart. There are four possible outcomes:
      1. NER - No evidence of rejection
      2. 1R/1A - Mild rejection -- requires no intervention
      3. 2R/3A - Moderate Rejection -- Must be treated with very high dose steroids and repeat biopsy done.
      4. 3R/4A - Severe Rejection -- May be a threat to the donor heart leading to irreversible damage.
I have been in moderate rejection 3 times. All related to Revlimid, the drug I take for Amyloidosis. I always feel a little off-balance after the biopsy. But especially this time as they tried 12-13 times to get 5 good pieces of my heart, but the fellow kept hitting scar. I can tell when the get a good biopsy as the 'tug' that I feel as the heart is pulled up in my chest toward the pericardial sac is quite noticeable; albeit, not painful. More tug, better biopsy. (In my best Brooklyn acccent, "You want a piece of me? Start tuggin' at my heartstrings, Doc!")
Barbie and I left Santa Clara and drove 3 1/2 hours to Yosemite. We didn't have a reservation. The Yosemite lodge and Ahwani were booked. However, we got one of the last three unheated tent cabins. Three wool blankets, socks and cuddling kept us warm enough to sleep.
My goal was to hike to the top of Vernal Falls and more specifically the Mist Trail. from Yosemite floor, this trail rises 1000 vertical feet in a distance of 1.5 miles. I sure some math whiz can calculate the slope; suffice it to say, it is steep. The last 0.3 miles is carved granite stair steps.
I was told that my biopsy results would be back at around noon. An early call usually meant bad news. It didn't matter, there was no reception on the trail. I figured, "Do the hike before you know the results so that bad news won't keep you from going." I am sure you readers do not fail to see the major flaw in my logic and will assign me to the stubborn category. So be it. Some times I take risks; but risk-taking is what makes us feel truly alive. We were prepared. Protection from the environment, good shoes, plenty of water, snacks and the coup du gras, my birthday present of two walking sticks. We moved slow, Barbie patiently waiting for me on my many breaks, but we made it to the top. It was magnificent. When I hiked Lassen I was a 96. Today I started as a 74, but, the more I hiked the better I felt. Moments like this remind me of what I am capable. Yosemite is truly a hospital for the soul. If you have not been recently, put it at the top of your bucket list and go.
Being at the top felt wonderful, but, as in life, the best views and hence the best memories are on the journey up.
We drove home renewed and then the call came. I was anxious knowing that a 2R/3A not only meant disrupting my next two weeks for necessary treatments and a re-biopsy, additionally it would alter the course and future plans for my amyloidosis treatment. But, fortunately, the news was good. I am 1R/1A. I went home and took my first Revlimid of the new cycle. We continue as planned.
Whether tenacious or stubborn, it turned out to be a most enjoyable day.

Kevin

Stay Calm

Mist Trail to Vernal Falls

I was supposed to be well during the 4 weeks off the chemo. Instead, I have spent the last three weeks sick, first with GI issues and then bronchitis, again. Work doesn't stop when I feel ill; but I am glad that I work only three days a week. Yesterday I had put on the calendar to drive to Yosemite to climb the 'mist trail' to Vernal Falls. But I am still pretty weak. The mist trail  is steep and well, misty; hence balance in required to not fall off the cliff into the river below. Instead we drove to Grass Valley and back through a different route that took us behind Beale Air Force Base. The GPS didn't mention that 10 miles of it was dirt road.
Today I am feeling a little better and helped Barbie around the house. It seems like September is when we do our big projects.
As part of my experimental protocol to treat my Amyloidosis, I increased my dose of Revlimid to 5 mg/10mg on alternating days. I then waited 3 weeks and did an Allomap blood test to see if I was in heart rejection. The result was not good and I now need to have a heart biopsy in Santa Clara on Tuesday. I hope I can convince the judge to let me off of jury duty that day. It is quite inconvenient that the one drug that clearly works to decrease my light chains and treat my amyloidosis also causes heart rejection. Of course, I can't complain. Everyday I get to do really cool things and interact with so many amazing and nice people.
Last Wednesday Dr Gunther-Mayer did a noontime conference on physicians as leaders. At the end he confessed that as a Chief Resident at UC Davis he one day discovered that he possessed the gift of the ability to calm people. As he said that, I realized that I too can do that. Partly because I don't panic or succumb to fear in crisis situations. If I am calm, those around me join in. Sometimes, though, I do get sad and, heaven forbid, momentarily discouraged. Barbie is usually the only one who witnesses those moments. I know it is especially hard for her. However, she never tells me to 'buck up' or 'get over it'. She doesn't try to come up with pithy 'silver lining' metaphors. (That's my job.) She quietly puts her arm around me; she holds my hand until the moment passes and then we move on.

Maybe this week I will climb Vernal Falls. If my heart is in rejection, then maybe next week.

Kevin

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