Sunday, December 19, 2010

Moments and Memories

This is not the way I remember it
How long is a moment? Fifteen seconds? Fifteen minutes? How long is a memory? Forever? I looked out the window to see the sun reflecting off the brilliant green moss on a tree in the backyard. The hills, looking toward the Sierras, were golden as the storm clouds finally broke. I thought, "I will capture this moment with a camera and make it permanent." I walked 20 feet, affixed a lens and back to the door. Maybe 45 seconds had passed and now the tree looked gray as the clouds had again shifted. Somehow I delude myself in thinking a memory is something solid or fixed, or that a moment can be held unchanged with a photo or a video. Yesterday, while sorting through pictures from the last year, I happened on to a photo that I got from my mom's camera. The image showed me in a hospital bed with my brother, Daren, and my sister Leslie standing near the head of the bed wearing full gown and mask. I was shocked to see myself. The picture was taken while I was in septic shock after the bone marrow transplant. My kidneys were not yet working, so that the 5 liters of fluid they used to resuscitate me were still visible in my face. My left eye was bloody from a vessel I burst while vomiting. I attempted a smile, but was quite unconvincing. I looked at the photo and realized that I didn't remember looking like this. Not so much the physical appearance, more so the fatigue I now saw in my countenance. Somehow, my memory had softened the experience as I originally saw it.  I realized that memories can subtly shift as do the hues reflected off the moss covered bark. The tree doesn't change; just the way we see it.

A moment is not defined by time, rather what an experience feels like in the immediate.We grab urgently at dandelions already on the wind exclaiming, "This moment is so precious, I must hold onto to it forever," as I frantically adjust the focus and see it through a viewfinder only to find that the feeling has already passed.
Last night, Caitlin performed with a group that did a Christmas show with dancing and singing. I had no idea that she could dance so well. However, my early Christmas present came on the final number as she stepped forward to sing the solo on "Sing Noel." Her voice was angelic. I didn't even know she had a solo. I sat overcome with emotion as the moment washed over me. I am sure that someone videotaped it and I could watch it again. I know I would enjoy that. But I could never recapture that moment of surprise and wonder; it was enough.

The last year has been wonderful, yet relatively normal with regard to my health. I find myself more and more occupied with the responsibilities at work which consequently occupy more of my thoughts. I actively must remind myself to 'find the beauty in every day'. The memory of what it felt like two years may be changing. But how can I really know that since memory is all we have and it is not static. What I do know is that there are more surprises and wonders that lay before us. New moments and new memories. We must never cease to be amazed. Pause; savor the feeling.


Thursday, December 16, 2010

Best month ever!

You don't always notice feeling better. It is often not a recognizable moment. Whether you are ill for a week or a year, when we finally have a good day sometimes we are so focused on getting our to-do list done we have failed to notice that we are moving a little faster or with less pain. You can't remember when the sniffles went a way and breathing became easier. However, at some point when there is a lull in the activity we realize, 'Oh, my pain is gone," or the amazing revelation, "Yes, now I remember what normal feels like." Ironically, it is then that the aha moment comes and you feel like the blind person who has just regained their sight. Then you immediately pray, "I hope I feel like this tomorrow." To those who are chronically ill, imagine being healthy so long that you forget what it feels like to be sick. That was November.

For two weeks in Paris and Barcelona I never felt sick and we really didn't even talk about it. There were just too many other things far more interesting. I had been praying for months that I would be healthy enough to travel. Then I prayed that Al Qaeda would not bomb the Metro. Then I prayed that the Parsians would end their strike so that our plane would have fuel. All of my prayers were answered and then came the one I didn't expect, to forget that I was even sick. Truly a Gift from God. I thank Him. I thank my brother Harold and sister-in-law Darlene who invited us and housed us. I thank Dr Shrier and Dr Sardar for both suggesting and giving me an infusion on gamma globulin to boost my immune system. But, of course, I mostly thank Barbie, my reason for living.

But wait! There's more!
Two days after we returned, we left for Park City, Utah to spend Thanksgiving with all of our children, their spouses and Barbie's family. Even in 4 degree weather, the warmth of their company made it a fabulous occasion. We had so much to be thankful for.

On our return, I knew in two days I would begin chemotherapy again. Memory is a funny thing. I thought I knew what to expect. But just as you are surprised when you suddenly recognize you are well. Equally, I forgot how hard chemo can be. It seems like Barbie remembers this better than I do. But as I always say, "No matter how bad I feel today, I will feel better soon." And I always do.
Hope is a marvelous thing.


Friday, November 19, 2010


In the middle of our trip to Paris, we went to Barcelona for 3 days. Barcelona and Paris are similar in that they are both cities in Europe. Where Parisians are polite, Barcelonians are passionate. From the moment we got off the plane we witnessed constant kissing. They like to show there affection. The city is a mix of interesting architecture and a language that is mixed. They speak Spanish and Catala, (to to me Catala sounds like Spanish mixed with French, which our red-haired waitress warned us not to repeat.) Some of the people were friendly, but others (those in the department store) were not. But the populous was redeemed when we got on the wrong train and missed the airport. A kind young man not only told us we were on the wrong train, but got us to the nearest bus stop and did not leave us until we were safely going in the right direction. The people of Spain have a rich history and a rich culture, and just like the French, have much to teach us. The food in Spain was amazing. I had paella the first day and thoroughly enjoyed it. We toured the entire city on an open tourist bus and stopped at an exposition built for the 1929 worlds fair to preserve Spain architecture. It was delightful to watch the children play in the medieval square. I also enjoyed conversing in a language that I can both speak and understand. The trip culminated with an evening performance of Flamenco dancers on a venue midway down Las Ramblas which was near our hotel. Clearly, this traditional dance, accompanied by Spanish guitar, embodies the passion with which they live their lives and maintain their traditions for generations to come.


Wednesday, November 17, 2010

Speaking French

If Spanish is your second language, it forever ruins you from speaking French. I do not understand French pronunciation. It is no wonder that when the Norman kings ruled England for nearly 200 years, the language never caught on. We did, however, adopt thousands of words from the French, many of which we still spell the same but pronounce quite differently. When I try to speak French, my brain goes into spasms. First, I want to say everything with a Spanish pronunciation. All of the words common to English and French have their roots in Latin. So my language cortex combines them at the Spanish grey matter and sends the message to my amyloidosis enlarged tongue with the end result being gobbledy-gook. They just don’t say it like they spell it (but neither do we, [ i.e. neither]). Boy, the Spanish got it right; Dígalo como se deletra.

To speak French ignore the consonants and nuance the vowels; the more vowels the better. You want water in a restaurant? Ask for ‘Un carafe du eau’. (Forgive my spelling, I don’t speak French). Nasalize the ‘n’, I have no idea what to do with the ‘r’ and the eau (water) may be somewhere between the ‘oh’ in show and the ‘oo’ in boot or the ‘u’ in put. That reminds me, English is a mess to, I mean two, no, I mean too.


Sacre Couer in Montmart

Saint Chapelle

Adventures in Chocoltae

Monday, November 15, 2010

The Museum Pass

At Versailles

Recently, Barbie, Jeremy, Caitlin and I successfully navigated the world’s largest corn maze in Dixon California. Little did I know that was only a pre-amble to an excursion into the maison du mazes of France; Versailles and the Louvre. I am all for saving a buck, (or a Euro which is 1.4 x harder). So we bought the two day Museum Passes. That means that you can see all of the museums you want for one prix fixe as long as you pack it in to two days. We chose Wednesday and Thursday because some museums are open until 9:30 PM, thus allowing oneself to meander until you are completely exhausted, while your brain and feet absorb the sum total of all French history and culture.

As we made our daily 45 minute train ride into Paris from Bailly-Romainvilliers, we saw the sun not only, break through the clouds, but a clear azure sky. We changed plans and decided to head to Versailles. This was the palace of French royalty until the French revolution which culminated in the removal of the heads of state. We first toured the palace which is larger and more opulent than any prior edifice I have seen. Satiated with golden gildings, we retired ourselves to the gardens. And I mean square miles of gardens. Immediately Barbie and I got lost since I took a diagonal right at the second fountain instead of the fifth fountain. We have been travelling with my brother, Harold, and my sister in law, Darlene. They decided to take the tram instead and meet us at Marie Antoinette’s estate house. Unfortunately, we didn’t clarify which house. The large mansion, the little mansion or the farm house village she built to recreate her childhood. It was a long walk for us once we got on the right path and never met up until hours later we finally found each other back at the palace.

Palace at Versailles

Hall of Mirrors


Nevertheless, our visit to the Marie Antoinette’s village was quite picturesque and was accentuated by the beauty of the sunshine and clear weather.

Marie Antoinette's farm village

Back together again, I expected Harold, Darlene and Barbie to want to ‘call it a day’ and head back to the resort. However, they agreed to go do the Louvre instead. While Versailles boasts miles of outdoor gravel paths, the Louvre offers miles of indoor marbled corridors instead. It remains one of the most celebrated museums in Europe, and with good reason. It has become a receptacle and guardian of some of the most important art pieces and artifacts in human history. We tried to see what small fraction of its contents we could before we were totally exhausted; the Mona Lisa, the winged victory, Napoleon apartments, French renaissance etc………

Mona Lisa and me

Napoleon's dining room

Finally, it was back to the ‘A’ train for the journey home. Time to rest up for the second day of the museum marathon; Rodin, Napoleon’s Tomb, Army Museum, Saint Chapelle and finally, the Musee de O’rsee.


Tuesday, November 9, 2010

On the bridge

Finally, the clouds broke and the setting sun appeared for the first time today only with only 30 minutes left of light. At that moment we were crossing the Pont Notre Dame and to the east the reflected light in the trees along the banks of the Seine provided a golden glow. To the west the sky gave us the only splash of color that we witnessed all day. It was glorious. The day began in Paris after the 20 minute bus ride and 45 minute train ride to somewhere deep underneath the most dangerous traffic circle on the planet, Charles De Gualle etoile. As we ascended, we noticed the soaked shoes and umbrellas of those descending. Once on the street, the freezing wind inverted our umbrellas as we posed for pictures in front of the Arc du Triomphe. The proof of our presence there now digitized; we raced again down into the Metro with its dry warm, albeit stale air. We now headed for the Eiffel tower, but on the way we were sidetracked by lunch.

To find a good meal in France, go to a non touristy area, close your eyes, and walk until you bump into a building. Then look around to see if there is a café or restaurant is in your peripheral vision. Pick anyone that looks interesting, but it is even better if it is on a corner. At home it is an event to go out for a fine French meal. In Paris, it is all French food. Before you sit down, look for the chalk board to see what the specials are, this is a good place to begin. I started with an entree of saumon au fume with tzatziki sauce, pita and salad. Even the salad was unexpectedly delicious. This was followed by a parmesan risotto with jambon. Tre magnifique! Of course, I couldn’t leave without the requisite crème brule.

I noticed something about France today. Each culture has something that they may excel at. The French, after millennia of existence have mastered the art of subtle accessorizing. This is evident in their cuisine, their décor and architecture and the beauty of French women. The basic ingredients for delicacy begins in nature, however, with just the right modicum of accessory, food becomes fabulous, buildings become more than stone boxes and a woman’s natural beauty is accentuated while still appearing natural. Remember that the word delicacy begins with delicate. Sometimes in America we go to extremes in the loudness and quantity of our experiences. A burger at Carl’s Junior is not enough. We have to make it huge and throw on pastrami or cheese steak so that even the most undiscriminating palate will be satisfied. Somehow, here in Paris they understand that less is more and understatement can say it all.

After a long and leisurely lunch, we rambled to the Champs du Mars to view the Eiffel tower up close in a cold now drizzling rain while we waited for a bus to take us through the middle of Paris. Finally, we found refuge and dryness inside the Cathedral, Notre Dame. It is always mildly disconcerting to me to have a place of worship overrun by tourists snapping photos in an effort to somehow take a piece of that ancient beauty home with them. I was of course, no different. I know that the photos I will look at next month will in no way reflect the workmanship seen in the stained glass as viewed in person standing 20 feet below it.

Finally, back on the bridge, the grey drizzle ceased and Barbie and found ourselves on the same spot, on the same bridge, where ten years earlier a polite Parisian had taken our picture with the river Seine below. It was time to update ourselves in both remembrances and aspiration as we could see where we have been and where we are going. Before it can become a memory, it must first be an experience on our bridge from the past to the future. This is how we subtlety accessorize our lives.


Saturday, October 30, 2010

Difficulty Swallowing

Today at the Northern California Amyloidosis support group, one participant commented on a recent  event where she tried to swallow a large pill and it got stuck in her throat. Nothing she tried could coax the large oblong tablet to dislodge. Nor could she cough it back up. Finally her son took her to the emergency department for help. By the time she got there, the pill seemed to be gone but she had an irritated larynx for days afterward. This struck a chord (vocal, that is) with the rest of the group. Soon there were similar stories shared as well as suggestions and remedies. One such patient also was evaluated with a swallowing study and was recommended for swallowing physical therapy.
Why is this such a big deal. Well, it turns out that swallowing can be a very useful reflex. Not only for beginning the process of life sustaining alimentation of food  and drink; additionally it may become necessary, when found to be in major logical error, to swallow one's words. (The latter often becoming the more difficult endeavour.) When you check the list of symptoms associated with amyloidosis, dysphagia, or difficulty swallowing is one of the most common. It is also often associated with hoarseness.
As I pondered this dilemma while driving home, I decided to share my expertise on the subject. I know that right now you are thinking, "Kevin, you are a urologist. What makes you an expert on swallowing?" As it turns out, I have been gulping down stuff for over 51 years and began doing this in earnest about 4 months before I was born.
Amyloidosis overproduces bad proteins that infiltrate many types of tissue. including smooth, skeletal and cardiac muscle. The esophagus contains smooth involuntary muscle while the tongue is skeletal or voluntary muscle. As the disease progresses, the tongue becomes thicker which prevents one's ability to use the tongue to clean stuff from between your teeth and lips or cheeks. Additionally, the back of the tongue obstructs the posterior pharynx and may even lead to catching of food or pills near the epiglottis or valecula. Once trapped, neither coughing or continued efforts at swallowing can dislodge the pill. Eventually, severe gagging may occur as a result. The swelling may also affect the area of the glottis or vocal cords leading to hoarseness. The severity of these symptoms may wax and wane. I personally believe that congestive heart failure from restrictive cardiomyopathy may further exacerbate these symptoms, however my proof for this is personal anecdote as my own symptoms of hoarseness and difficulty swallowing greatly improved after my heart transplant. I even have to question whether decreased saliva production may also be a factor to make things worse. Currently, I also find that dexamethasone-caused fluid shifts may also play a role, as I notice predictable hoarseness and dysphagia concurrent with the medication.
There were many suggestions today proving that the collective and very practical wisdom of support group members can be more valuable than the staid advice of my medical colleagues.
1. Have a thick slurry nearby when swallowing big pills I use applesauce, others suggested yogurt or pudding. One suggested a clump of bread to dislodge the pill.
2. Position a long ovoid pill on your tongue parallel to the pathway, purse your lips and suck in the water very fast to create a vortex in your mouth to more rapidly move the pill down the throat.
3. Certain pills may be crushed and mixed with food (applesauce is good as it may cover the bitter taste). Time released pills or capsules cannot be crushed and some pills crushed taste horrible (KCl, potassium chloride and prednisone)
4. Most pills will eventually dissolve, however, this can cause local irritation and is some case cause a chemical laryngitis which may worsen to infection in the immunosuppressed.
5. Generic pills are cheap and they often skimp on the coating, be advised.
6. I find that my swallow reflex is much better after I have had a meal. If possible, swallow your pills after you have eaten something.
When you have an uncommon disease causing and incredibly common symptom, sometime the best advice comes from your fellow sufferers. This is why I find support groups so valuable; Collective wisdom through shared experience.


Saturday, October 23, 2010

I can't

This is the first saturday Kevin has felt good since July. What a great and happy day it's been!


Tuesday, October 12, 2010

I Can't Complain

'I Can't Complain' belongs in the ubiquitous plethora of responses that humans vocalize when their paths cross. When I was younger (and naturally lower to the ground) I would observe bugs and wonder at there purpose and motivation. Ants tended to follow the same path as other ants even though the driveway was comparably equivalent to the state of Rhode Island. As they passed each other, they stopped to intertwine antenae in some form of ant twittering. I imagined that the first ant would say, "How's it going?" and the second, pulling from his bag of standard responses would quip, "I can't complain."
Those of us who wake up every day wondering, "How am I feeling today?" find that these common pleasantries take on a new and much more literal meaning. These are the questions that we ask ourselves and wait for our body to answer. For me, however, 'I can't complain' is now a mandate. It is not as if it could be worse, it should have been worse. If I feel crummy I remind myself it is better than not feeling. I really can't complain because I am still alive. Not only that, but I really have a wonderful life. I have said before that to live without serving others is mere existence. I continue to retain the privilege of serving others.

Let's say that the chemotherapy makes pizza taste like cardboard, my body feel like I just got off the Tea Cups at Disneyland and head needs to be in a vise to offset the pressure. No matter, I know that if I go outside my health score will increase by three points. If I then get on my scooter; it is now up by seven. When I walk into my office, it magically increases by 13.417. You may say that this is just placebo effect, but I did a double blind study by closing both of my eyes and still felt the same. Somehow, the more I get involved with nature or other people the less I focus on myself. I guess I should write a self-help book. However, it would be very short. Only three sentences.

1. Life without service is mere existence
2. Happiness equals service plus love
3. There ain't no free lunch, there just ain't.

I think the last line, if not understood, is why people complain. It bothers them if they are not in complete control of their life or if they think their situation is unfair. Somehow, they think that merely by breathing, they are entitled to stuff. Life is not fair. But that is not any one's fault. It just is what it is.
For me to complain would be the ultimate expression of ingratitude. So it is not that I shouldn't complain; I cannot complain (that doesn't mean that things don't still annoy me, just ask Barbie.) Somehow I feel that if I were to complain about how it is unfair that I got this disease, and swim in my own fetid pool of self-pity, that all of the atoms in my body would collapse into a ridiculously small black-hole; overcome by the ego-driven gravity of my situation. Ultimately, that would warp my remaining time. It is just not worth it.

Now when people ask how I am, I truthfully respond, "I can't complain." ....But my upward inflection indicates the veracity of hope contained in that moment.


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.


Saturday, August 21, 2010

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.


Monday, August 16, 2010

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!"


Friday, August 6, 2010

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.


Saturday, July 10, 2010

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?