Looking back at 2010

Mostly what I noticed in 2010 is how a certain normality returned to our lives. Predictable patterns emerged; both in my health and in our daily activities. I cycled my chemotherapy, one month on and one month off in an attempt to prevent rejection. It worked. I did not have any episodes of heart rejection in 2010. Albeit, the cyclophosphamide is progressively the source of more complications with each new cycle. But the alternative month feels so good.
We lost too many people in 2010. Both from the amyloidosis support group and the heart transplant group. The year ended with the passing of Bill. His wife Dina runs the amyloidosis support group. I remember the first time I met Bill. His body had already been ravaged by amyloidosis, yet I gained so much hope as a reflection of his courage. Bill and Dina were strong for all of us. He will be greatly missed.
Last week I went to Santa Clara to get my 4 month heart biopsy. This time felt different; it hurt. I realized that my body's nervous system is now innervating my foreign visitor. The Scarecrow is finally talking to the Tin Man. As I mentioned this, the fellow doing the biopsy, (assuming that I was complaining about the pain) walked around the table to explain. He said, "What you are feeling is the ..." My laugh cut him off as I retorted, "We doctors are all the same." As I looked up I saw a strange look and finished, "You just told me what I am feeling. How can you know that?" How many times have I done the same thing.
A few hours later, sitting in the transplant support group, I heard the same complaint over and over; 'my doctor didn't listen to me'. We all try so hard to fit everyone into a box that we understand and forget how differently we experience things.
2010 was a wonderful year. We went to the Grand Canyon, Paris, Spain, Utah and New York. Barbie finished her prerequisites and was accepted to Dental Hygiene school. Jeremy, Alexandria and Rebecca graduated from college. I never called in sick (although there were days I wanted to.) I love going to work and I love coming home. I am humbled by the extra days that have been gifted to me. As my friends pass from mortality to their eternal home, the words, "There but for the grace of God go I," occasionally pass through my mind. I used to think of this cliched phrase as selfish and unfeeling. Yet now I understand. I may not have passed this year, but it is certain that some day I will. We all will. So much is not in our control. I accept that as I accept God's grace in my continued daily breath. I do not understand why some die and others live. It clearly is not based on merit. My only peace is through the faith in my Saviour.
As I look forward to 2011, I am excited to continue in my relationships with friends and families. I feel really good, physically, mentally emotionally and spiritually. I begin this year with no regrets.

Kevin

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.

Kevin

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.

Kevin

Barcelona

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.

Kevin

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.

Kevin





Sacre Couer in Montmart

Saint Chapelle

Adventures in Chocoltae

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

Gardens

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.

Kevin

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.

Kevin

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.

Kevin