Thursday, September 23, 2010

One step at a time

Stairway to Heaven

Only 962 steps to go

Beauties of Nature

There's always room at the top

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.


Saturday, September 18, 2010

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.


Thursday, September 2, 2010

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.