Ups and downs

Sometimes health updates, albeit not very absorbing reading, can be helpful to some who just might experience the same outcome from a specific treatment. I imagine the number of people in the world that have primary amyloidosis, then a heart transplant, then a bone marrow transplant and then Revlimid are very few. However, that is the major impetus for me to write. Where else can they find this information?
One of the side effects of Revlimid is that it can decrease your white blood cell count and your platelets. Paradoxically, it actually raises my red cell count. My white cell count on Monday was 0.8 K or 800 cells; that is really low (Normal 3.4 K to 11.8K) My percentage neutrophils dropped to 49% so my total neutrophil count is now 400. During my bone marrow transplant they wouldn't let me leave my room even with a mask until I was above 500. I went to work the last two days. I did, however, every once in a while where a paper mask and I washed my hands frequently. Even before this drop I was quite concerned with swine flu. I still am. Ironically, concurrently with this severe immunosuppression I caught a cold. My oncologist, Dr Sardar added Zithromax, a potent antibiotic, to my antiviral medications. I am well covered.
Last week in San Diego, if I were to have given myself a health score I would have been 94 on Tuesday morning (even with a broken rib) and then dropped to 62 for 45 minute on Tuesday afternoon. By Wednesday because of steroids and being at Disneyland on my birthday, I was back up to 91. I haven't been this high in two years. It may seem like a roller-coaster ride and it was; Space Mountain, Splash Mountain, Thunder Mountain, California Screamin' and Indiana Jones. I had my ups and downs and loved every one of them.

Kevin

The Art of Boogey-Boarding

When we moved to California 5 years ago, I was excited to participate in three of my favorite outdoor activites. They all begin with the letter "B": Bicycling, Backpacking and Boogey-boarding. As I fell ill, the ability to do these sports also fell by the way-side. My new heart gave me new hope. I now am able to bike ride for short distances, but I am not yet ready for back-packing. I have anticipated all year our family vacation to San Diego where I could once again ride the waves.
Boogey-boarding is not surfing. Surfing is more work and more addictive. But you still get that thrill when you catch the perfect wave. As a sport, it is not an issue of strength or coordination; rather it requires timing. You can't catch a broken wave (well, you can try but it is not as much fun) and if you are too far out, the wave rolls underneath you. The idea is to swim into the wave just as it is breaking such that it lifts you to the crest and you ride down the face. At that point you are in control, not the wave.
Last Monday I grabbed my boogey board and waited for the perfect wave. They come in sets and I usually wait for the second wave in the set. This one was big. I caught it just right and as oftens happens, when it breaks you drop. Only this time when I dropped, I felt something snap and experienced immediate pain in my left chest. The word 'osteoporosis' flashed through my mind. I am the only person I know that can break a rib water-skiing which I did ten years ago. Now I did it again. The pain was bad but not excruciating so I kept catching waves while trying to protect my left side. I wasn't going to give up this easily.
I was fine until Tuesday. I went and caught more waves and did fine, but when I went in the beach house, something happened and the fracture felt as if it moved into my lung cavity. I couldn't breath without the sense of being repeatedly stabbed in the chest. I worried that I might have started bleeding since my platelet count before we left for San Diego was 50,000. (This is low). Every movement, every breath, every heartbeat hurt. I waited to see if it would improve. After a half hour it resolved a bit and I was able to enjoy a delicious grilled salmon dinner that Michelle, my daughter-in-law, had prepared.
The next day we went to Disneyland. Fortunately, Wednesday is my Decadron day. Steroids have a strong anti-inflammatory effect which great reduced my pain so that I wasn't 'California Screamin' on Space Mountain. It was a magnificent day. Unfortunately, steroids also give me the hiccups which don't bode well with rib fractures. I guess you take the good with the bad; se la vie.
Otherwise, our week in San Diego was perfect. Bike riding, scooter riding, jogging, walks on the beach, s'mores over a campfire, good food and good company. It was a perfect way to celebrate the anniversary of Samuel and Michelle's wedding, my heart transplant and my 50th birthday. (I got into Disneyland for free on my birthday). I doubt that next year will be as eventful as the last, which is fine with me, but I plan on enjoying it even more.
I am still on the cusp of the wave waiting to ride down and take control of it. That is always where the thrill is and I am in for the ride of my life.

Kevin

Attitude of Gratitude

Mission Beach, 2 minutes ago

I woke up this morning with a profound sense of gratitude. As I lay here listening the my favorite sound, waves crashing on the beach, I thought of the gift I have today of being with our children and Barbie here in San Diego as we celebrate our 1st anniversary. Today Samuel and Michelle celebrate their 1st wedding anniversary. Barbie and I celebrate one year with my new heart. The music of the waves accompanied in my mind a hymn from church that I know by heart; "Count your many blessings, name them one by one. Count you many blessing, see what God has done."
Memory then transported me to August 16, 2008. My initial recollection of that day one year ago was disjointed. Anesthesia has the unsettling side effect of time compression. Since you don't dream, there is no sense of time passage. Multiple three minute episodes of consciousness over a two hour period are spliced into a 12 minute montage of confusion. Finally, when you are continuously awake and memory becomes contiguous do you fully realize where you are and the magnitude of what has just happened to you. In that moment, I felt it. More than I have ever felt it before; an overwhelming attitude of gratitude. It is not that I was grateful to be alive; I never even entertained the thought that I might not make it through the transplant. Rather, I was grateful for life. My gratitude was not directed at anyone or anything. I was simply thankful.
I became aware that my brother Daren and his wife Rachelle were sitting at the end of my bed. I remember that they were smiling. I asked them to come to my bedside because I wanted to say a prayer with them. I don't remember the exact words of my prayer other that I prayed for Sam and Michelle, I prayed for Barbie and I thanked God for the miracle of life that he had given me.

I am thankful for the loving faith and prayers of so many friends
I am thankful for caring and capable doctors and nurses
I am thankful for drug companies, chemists, PharmD's and pharmacists for providing me with the 'Chemicals for Better Living' that keep my heart inside my chest and invading organisms out.
I am thankful to all of my partners in the department of Urology at Kaiser for caring for my patients while I was gone.
I am thankful to my staff for helping while I was gone and helping me come back.
I am thankful to my patients for being patient.
I am thankful to be doing surgery again.
I am thankful to the wonderful men and women in our church for taking care of our family this year. We could not have done it without them.
I am thankful to all of you for sharing this jouney with us.
I am thankful to God to have trusted me with the strength to learn the things that He needed to teach me. I am not he same man I was a year ago.
Above all, I am thankful for Barbie, my reason for living. She is the love of my life. When I am with her, there is no pain, there is no illness, there is no fear, there is no hurry. With her I am truly happy and I will always love her with my 'Whole new heart'.
Kevin

Fire in the sky

Time somehow slows down when you are caught up in the beauty that surrounds us. We sat in the spa last night to watch nature’s firework show. As the earth passed through a belt of space debris, we got to witness the annual Perseid meteor shower. It is so named for the constellation from which these meteors seem to originate in the northern sky. The brightness of the moon did washout some of the more dim meteors; but there were some spectacular displays of atmospheric friction.

I silently wondered why we are so impressed by shooting stars. It might be their unanticipated fleeting glory. Within the serene constancy of the sky, we are suddenly surprised. Completely by chance we happened to be gazing in the right direction when a light flicked on for only a second. This excites us.

This reminded me of what it is like to fall and be in love. The initial romance of falling in love is like the shooting star: unexpected, fleeting, full of fire and passion, impetuous. The excitement is palpable. Once married, love is more constant and necessarily so. This consistent love is more like the stars: unchanging, predictable, eternal. Yet, not gets excited upon seeing Betelgeuse in Orion's belt and exclaims, "Look, honey, Betelgeuse is in the same place that it has been for the last 4 billion years!!!"

Sometimes you hear a woman complain that the romance is gone. This sentiment inevitably develops after the years of shared responsibility create a predictable routine as we orbit around each other. And yet, what wife wants to wonder every morning if her husband is going to go to work that day? Is the husband surprised again when he gets home to find that his wife, this week, has flown to Madagascar to get vanilla directly from its source? Marriage cannot survive without a mutual trust of consistency and predictability.

That being said, in the heavens of our love, there must exist the possibility of the occasional random flame amidst our unchanging stars. I often don’t buy Barbie flowers on the expected holidays. Rather, I might show up with the symbolically impractical bouquet of murdered flowers because April 3rd fell on a Thursday this year.

Ultimately, love must contain the stars and the meteors. We will always need both the North Star to guide and the fanciful flame to excite us.

Kevin

Success

There are days when I forget that I am ill. In that sense I am no longer ill, rather I have an illness. The tale-tale signs of illness such as my tremor, occasional hoarseness or red spots on my eyelids, since they don't really bother me, are simply part of who I am now; like having a mole on your cheek. The contrast between now and 6 weeks ago still amazes me. At that time everything went from bad to worse. Conversely, I now not only continue to improve both physically and emotionally, in addition we are finally winning in the battle against my amyloidosis.
Since the beginning I have always been fighting this on two fronts: to treat the damaged organs and to prevent further attack. The former was achieved in large part through my heart transplant one year ago. However, efforts at preventing further damage through control of the underlying amyloidosis have proved difficult. The first wave involved using Revlimid in October of last year. While this indeed lowered my light chains, simultaneously I had a severe and somewhat intransigent heart rejection. The theoretical ability of Revlimid to increase T-Cell response was thought to be the inciting factor. However, causality was never completely known. Revlimid was discontinued and I began Velcade in December 2008. The clinical response was minimal and the side-effects transformed me into a nauseous zombie. All of our hopes then rested on the definitive treatment, autologous stem-cell transplant, which had shown a 75% response in the Mayo Clinic series. I fell into the other 25%. Disappointed and unknowingly sick with cytomegalovirus (CMV), we went back to the beginning and started Revlimid again. (after my infection was diagnosed and treated) This time with Cytoxan to prevent rejection. Last week I got my kappa light chain level after the first cycle. It had dropped from 36.5 mg/dl to 18.5 mg/dl; a 50% decrease.
Barbie and I are quite happy with this result.
Yes, the pessimist might say it is too early to celebrate, but I find myself absent of any concern for the future because I am having so much fun today. I haven't felt so relaxed in years.
Work is great and I feel like I am really accomplishing something. I am a better doctor, a better department chief and, I hope, a better person. My only desire is for everyone to be happy.
I certainly am.

Kevin

Surprised

I loved Kevin's current post.  His humor is back with a vengeance and I can't complain.  But I am quite surprised there was no mention of our anniversary.  Today we have been married 27 years.  Unbelievable.  That's a long time.  Kevin remembers anniversaries better than I do.  One year he brought flowers home and I said, "What are those for?"  He reminded me that our anniversary was the next day.  Last night he brought me home 1 lb. of my favorite See's candy; dark chocolate walnuts.  I was quite impressed because usually half are walnuts and the other half are his favorites.  This time it was just for me.  He also added two small red foiled hearts in the center of the box; very touching and sweet.  

My life with Kevin has been full of excitement, adventure and many joys.  Our marriage hasn't been perfect, but we have both grown up a lot.  Thank goodness. I am him and he is me.  We get each other.  His memory is better and my singing is better.  His sandwiches are better and my baking is better.  His metaphors are better and, well, mine are mixed.  For example, just the other day I said, "He is out like a rock." "Light", he said.  Oh well.  I inherited it from my mother and I LOVE my mother.  He is more sentimental and I am, well, I'm just mental.  

All in all, he is the best thing that ever happened to me.   

Barbie 

Operation Disney

HORSESHOE KIDNEY

I went to Disneyland yesterday. They opened a new attraction and I just had to try it. It is called 'Stone blasters' It is really fun. They refer to it as a 'surreal reality' ride (that somehow sounds slightly like a 'suroxymoron') The object of the game is to slide a tiny telescope up through the urethra, find in the bladder a small hole; the right urerter. Then continue into the kidney. If you can locate the stone they upgrade you to a laser and you score points for blasting the stone into pieces smaller than 1 mm. They give you laser glasses, but they are only 2-D unlike the 3-D at the Toy Story Arcade attraction. You get to watch the TV screen while you work and the 'joy stick' scope is in your hand. You score extra points for sculpting the outside of the stones, but if you are not careful, you get docked 100 points if you Bazooka Blast the center, blowing up the stone and sending chunks flying all over the inside of the kidney. You also lose 5 points for each time you burn the kidney wall. We were very fortunate, though, because the opening of the patient's Horseshoe Kidney was facing up and that is good luck.
I got my highest score yesterday in the entire last year (which, of course, was easy since this was the first time I played in the last year)
The really cool part was that they actually provide a real patient for you to operate on. Disney does a great job; even the room was decorated like an operating room. I thought that the admission price would be steep, but at the end I actually got paid a reward for finishing successfully. I can see that this will be a very popular attraction. The only drawback is that the wait in line to get in is about 11 years.
I could be wrong about the location, but it felt like Disneyland because it is the 'Happiest Place on Earth' and where "Dreams Come True'. It certainly felt that way for me. I couldn't imagine a happier man on the face of this planet yesterday than me.

Kevin

Circle of Life

For those of you who might be new to this blog, might I recommend reading the entry that I wrote over a year ago entitled "How I got here" which I wrote in Rochester, MN on July, 19 2008 before reading on.

And so we have come full circle. The day that I have dreamed of, hoped for, for so long has finally arrived. The only word that I have to describe how I feel today is 'complete'. Today I performed surgery in the operating room for the first time in over a year. At that time, as I became a fulltime patient, I felt that a part of me had been ripped away and wondered if this day would ever come. However, I was carried and made whole by the love that I have received from from myriads of individuals whose compassion was extended toward my welfare. How do I deserve this? I do not know. What I do know is that if anyone ever considers this world of ours a dark and fearful place; may they see what I have seen for only five minutes and they will feel the absolute and immense goodness of people, regular people; those that we see everyday as we hurry to our next task. These people are you. You have sent me encouraging words, worried about Barbie and me, prayed for us, helped us and made us feel whole again. I wish that I could adequately thank you, the words I would attempt fall far short of the gratitude that I feel in my heart.

I know that the only way to convey this feeling is through my service to others. Today is a new beginning as I return again to that old path.

It is altogether fitting that my first surgery with my new heart is the same one as my last surgery so long ago. I removed a cancerous kidney laparoscopically from woman this morning. The tumor appeared to be contained within the specimen. This will likely give her a high chance of being cured. I was assisted by a very capable chief resident, Dr. Yap, and many of the outstanding nurses and OR staff with whom I have worked for years. I can't describe the joy I felt at being back in the OR. I felt as if I had come home after a long journey.

Recently, Barbie reminded me that my life has been saved at least three times this past year. I participated in saving a life today. Sometimes we save a life that is in immediate danger of ending due to injury. Sometimes we extend a life through the appropriate application of diagnostic acumen and skillful delivery of medicine and surgery. Sometimes a life is saved as a caring friend's compassion prevents the emotional destruction of a despondent and tortured soul as their outstretched hand assures them that they are not alone. We all, at times, have participated in life changing graces towards others, even if we remain unaware that our actions were so directed. These saved souls, that are lifted out of adversity, then begin to, in turn, lift others as the cycle continues. I plan to be here lifting others as long as my feet remain on a firm foundation.

And so we come full circle and see ourselves as we never have before, renewed and ready to begin again.

Kevin