Keeping up with a 15 year-old

1:45 P.M.
Caitlin wins second place in the Placer Branch MTAC Sonata/Sonatina Festival playing Sonatina Opus 36 #3: Spirituoso by Clementi

30 minutes later

Songs that make me cry

I've noticed over the years that certain odors will stir up a memory from the distant past. However, I cannot always connect a location or an event with the odor, it comes as more of a general feeling. I believe this is because odors are perceived in our primitive brain which is not well connected to the memory center, you get the Area Code, but not the Address.

Songs are different. An unexpected song comes on the radio or Ipod in random mode, and you are immediately taken to a specific place and time; and the emotion of that moment washes over you uncontrollably. This is only amplified if you are on steroids. Steroids bring your emotions to just under the surface so that, as I tell Barbie, they make me cry at toilet paper commercials. That 'quilty' softness gets me every time. So on days like today, when I take 40 mg of Decadron, I feel it.

There are five songs that make me cry. (This qualifies me for a "High Fidelity" top five list.) The first, (in chronological order) is "100 years" by Five for Fighting. That was the day that I had made the decision to leave Yale and Connecticut to move to back to California. The second is "Viva la Vida" by Coldplay. Barbie and were driving home from Santa Clara having just been diagnosed with Amyloidosis and told that I needed a heart transplant. The third is "Let Love In" by The Goo Goo Dolls. That day I was alone in the hospital, as Barbie had to leave me to go to Sam and Michelles' wedding and we had to pass on the heart from the Mayo Clinic. The fourth was when Caitlin came to Stanford, just after my transplant, and sang the song "Waiting" that she wrote for my birthday. The fifth was tonight, while taking Caitlin to piano lessons and hearing Imogen Heap sing "Hide and Seek" knowing that tomorrow I have to go back on high dose steroids because my heart is once again in moderate 2R/3A rejection. And we don't know why.

Generally, with every side effect I get, I try to connect it with something that is temporary, reversible or fixable; be it drug reactions, low magnesium or diet and exertion. But this time, I am out of connections. I can only trust in my doctors and keep my faith in God and be patient. I go back on 100 mg of Prednisone tomorrow for 3 days with a rapid taper. Beyond that, I cannot predict. But don't pray for me, pray for Barbie, she's the one who has to live with me.
We had planned on going to Utah to see Coldplay in concert and stay for Thanksgiving, It might end up being Boston Market in Roseville. (I actually love their turkey dinner, it's all the salt.) Seriously, though, I am actually feeling great, both physically and emotionally. I have the best doctors and the best family. I know everything will work out well. it always does. And there are so many songs yet to be written.

Kevin

Caitlin's Newspaper Article

Caitlin wrote an article for her high school paper about my heart transplant and I wanted to include the link.

Caitlin's Article

Coming attractions.

Timing is everything. I had the opportunity to attend the Northern California Amyloidosis Support Group yesterday in Walnut Creek. As a physician, I referred patients to support groups, but I never fully understood their value. Especially with a rare disease, it is very reassuring to hear the experiences of others. What is more interesting is how much has changed in a few short years. There were 9 people there with amyloidosis, 4 of us were newly diagnosed. The other 5 had all had stem cell transplants about three - four years ago. For them, chemotherapy existed, but had limited application and heart transplant was never offered. Of the four new patients, two had had a heart transplant, myself and Debbie (Debbie is a Kaiser patient that I met 3 days before my transplant whose course with amyloidosis parallels mine, but with a 6 week delay) and two were on drug therapy. Now there are choices which didn't exist before. This is a very good thing, but can sometimes be confusing as well.

Last week when I went to see my cardiologist, Dr Weisshaar, in Santa Clara, the pressing question was what to do next with me. Dr Weisshaar called and spoke with Dr Lacy, the oncologist that saw me at the Mayo Clinic and she did confirm that Revlimid could lead to heart rejection. She also added that waiting untreated for the Stem Cell Transplant sometimes might allow the amyloid to progress as amyloid is quite unpredictable. As I heard this, they were like more pieces of a puzzle that began to reveal the underlying picture, which in this case was a plan to proceed. There are 3 drugs that are commonly used to treat amyloidosis, Revlimid, (which I probably won't take again) Velcade and Melphalan. The latter can suppress stem cells and is therefore not a great option if you plan on proceeding to transplant. This leaves Velcade. Initially, I was hoping just to be treated with medication and avoid a stem cell transplant, but I feel that a transplant is probably likely and, actually, I would accept that if it means a more permanent cure or control of the disease without having to continue to take steroids. I really don't like the idea of being on steroids for a long time. My doctors met on Friday to arrive at a plan which I will learn of on Tuesday. I am prepared to do what they recommend, but I hope it includes interim chemotherapy until my heart is healthy enough to have the stem cell transplant. I will continue to take the weekly high-dose steroids (Decadron) to at least remind my misbehaving plasma cells that I am aware of their shenanigans.

Otherwise, I feel great. My strength is returning; I walked two miles today. Food tastes wonderful and I am not such an impatient 'toad' to Barbie. They warned me that the steroids would do this, but I thought that I could control it. Well, I was wrong.

I love the process of discovery, even if I am the one being used to reveal the right path. Like I tell, Debbie, "I'd rather it be me than you." If what we learn from me makes it easier for her, it's worth it. Nothing makes you feel more alive than taking risks.

Can't wait to see what's next.

Kevin

Feeling Better

I am feeling great. I believe that I have mostly recovered from the high-dose steroids. I have also had some severe dizzy spells and muscle weakness; then I saw that my magnesium levels were very low and this was likely the cause. Prograf causes you to waste magnesium and even though I was taking 3200 mg a day, it was not enough. I take more now. Also my doctor felt it was likely exacerbated by an inner ear issue and started Claritin and Nasarel and this has also helped. Today, I forgot that I was ill, I love those days.

A young man, a patient of mine, was recently admitted to the hospital, his grandmother commented to one of the nurses there on 3 South, named Windy (she is a great nurse, but, of course, so are also the nurses that I have met at Kaiser), how it was sad that Dr Anderson left his practice and had abandoned her grandson. Windy reassured her and showed her the web-site (Its mere existence being my own personal HIPPA waiver. In my case, personal knowledge of my medical condition actually has been helpful to others and continues keep alive my desire to teach.) She was both moved and relieved that my absence was not of my own choice.

While getting labs, I dropped by to visit this young man and reassured him that I would always be his doctor. I am very concerned about him. Then it occurred to me, there must be other patients who feel the same way. If anyone knows any of these patients, please reassure them for me that I am still here, my goal is to return to work and I will remain their doctor as long as I can. I also wish to express my deep thanks to my partners for their continued care of my patients.

After visiting this young man, I stopped by operating room to see Susan, a friend there, that had a gift for me. It was base-relief sculpture of the 'tree of life'. What a beautiful gift. This actually reflects a deep personal symbolism in my life that I alluded to previously, but is unknown to her. I thank her for it.

I looked at the board where all the cases were listed and had this desire to put on some scrubs and get back to work, but alas, I am an obedient and compliant patient and will abide by my doctor's orders and wait until she give me the 'green light' to return to work. Right now she is saying February. The most difficult day ever was when she told me to shut down my practice, it felt like my heart was torn out that day. Caring for others is who I am, I felt like I lost a piece of me that day. My next happiest day will be when I find myself with a ureteroscope in one hand and a 200 micron Holmium laser fiber in the other while blasting an elusive ureteral stone, what joy. Not as Bruce Willis in Armageddon, but like Michelangelo (I always tell my residents, don't drill the stone, sculpt it.)

To all of my patients, I will return and remain your physician as long as I can. This is my goal, this is my hope.

This gift from Drs' Stapp, Nanigian and Takahashi included a donation to plant 30 trees around the world.

Kevin

Mostly Dead

Princess Bride is my favorite movie. In one scene, the man in black, aka Dread Pirate Roberts, is captured and thrown into the 'pit of despair'. Count Rugan, aka 'the six fingered man' and the Prince are conducting research on torture and have built a machine that can suck life out of your body. They start low and suck one year of life from the man in black, reducing him to a quivering, whimpering mess. But then in a fit of jealous rage, the Prince turns the machine to full power, killing the man in black, well, not quite, it leaves him 'mostly dead'.
Mostly dead is what happens to you after 5 days on 100 mg of Prednisone, followed by one day of 40 mg of Decadron (200 mg prednisone equivalent) followed by 3 days of 1000 mg of IV solumedrol (Prednisone equivalent to an "uberdose") I felt wonderful at the wedding and reception, though, as I was lifted by my daughter's beauty, exuberance and infectious smile. But once she an Corey were gone, so was my strength. I gave myself the last dose of solumedrol, at home, in the IV left in me by the nurse.
The next three days, I couldn't move. It required huge mental effort just to get out of a chair. Speaking was a chore, and eating was impossible since everything tasted horrific. Note to self: Avoid high dose steroids in the future.
But then, with a finger wiggle and a head giggle, life began to return. Now, lets inventory our assets.
This all began two weeks ago with a biopsy that showed moderate rejection, the following week it was worse. This concerned my doctors greatly because my anti-rejection drugs were supra therapeutic. Phone calls flew around the country to try to figure this out, meanwhile the only treatment option was to go 'medieval' on the steroids. The Revlimid was stopped on the chance it might be interfering. The jury is still out on that question.
But me, being me, I always expect things to improve and they have. The heart biopsy last week showed no evidence Amyloid deposits, and the heart biopsy this week shows marked improvement with the rejection now at a 1a. I will take a month off of chemotherapy to let my heart get better, and then, who knows? I am still on bolus Decadron weekly on the chance it may keep the amyloidosis at bay. My Kappa Light Chains (amyloid marker) remain low.
Many questions remain, however. Was it really the Revlimid that caused my strange rejection? Was it an occult infection, masked by steroids? Was it the economy or election season hysteria? I am sure my doctors must see me as two people since I am a paradox. But then, I have always been unique. But I don't worry; if not plan B, then plan C and eventually on to plan 401K.
In the end, I am always aware of the sincere support of so many on my behalf, this makes the bad days bearable and the good days glorious. I haven't written recently because, well, I was mostly dead, Miracle Max did offer me a cure, but it took a while to swallow, as the chocolate was still quite unpalatable. Today, chocolate tastes wonderful, and that says a mouthful.

Glad to be among the living.

Kevin

If you haven't seen The Princess Bride, it is worth watching.

Rebecca and Corey's wedding

A Dance with my Daughter

Life is measured in events. Albeit, these events are rare compared with our day to day activities. But these are what we remember, mark and measure our life. These events can be seen as islands on the horizon in the ocean of time on which we spend most of our days. We float along daily in the glistening ripples and waves of daily activity, the forward movement almost imperceptible as we sleep, eat breakfast, answer emails discuss the calendar and talk and listen and do 95% of what our lives really are. These moments are critical, but seem mundane. However, the big events are both behind us and ahead, a reminder of what we have accomplished or hope to do. The islands in our ocean fade into past memory and appear anew on our horizons: Birth, death, prom night, 1st football game, a major illness, a family vacation, a promotion, new job, new house. As a parent, they are an inevitability. Someday, your children grow up and leave you. You prepare them for this their entire life, but it is always bittersweet.

As a father, you hope and pray that your daughter falls in love with a good man, a man better that you are, one who will respect and care for her, but as she dates, you give up hope. Then one day, she comes home with a sparkle in her eye. This is different. This young man is not like the rest. You meet him and he is was she needs and more. Suddenly, on the horizon, a distant peak of an island becomes visible for the very first time and you feel the currents pushing you toward that inevitable port. However, almost simultaneously, storm clouds begin to gather obscuring the view and the way.

On June 13, 2008 Corey proposed to Rebecca. Corey included me in his plan to surprise her and it worked beautifully. She accepted and the date was set for October 25th. Ironically, that same morning, I finally found out my diagnosis of what had kept me ill for two years. I had restrictive cardiomyopathy. A week later it was determined that this might be due to Amyloidosis. Further investigation was disheartening as the prognosis was bad and the course of action unpredictable. The storm clouds descended and the waves begin to carry us off course. With two of our children getting married in the near future, it was difficult to know what to do. Samuel and Michelle's wedding was only 2 months away, while Corey and Rebecca's was in four months. With a open-ended work-up in Rochester MN, inpatient status in Santa Clara and waiting for the elusive new heart, could we make a course correction in time to share these cherished events. To Sam I said, "I'll do my best to be there." It was not to be. But to Rebecca I promised, "I will dance with you at your wedding." I meant to do everything in my power to keep that promise.

We arrived at the appointed date last Saturday. The beauty of the morning was only exceeded by the beauty of Rebecca. Her smile and unabashed joy kept us all afloat. The wedding was a dream come true. We all arrived, family and friends at the reception where she floated around the room in her white dress with such grace and poise. Then the moment came. I danced with my daughter.

I took her in my arms, as I have done for 20 years, and carried her around the floor. She told me not to cry, but the emotion was overwhelming. We reminisced how she used to stand on my feet when she was two as we danced around the family room. She loves to dance. I told her how much I loved her. I always will. But now begins her time to dance with another. And I am so happy that she has Corey. A fathers' greatest desire, to give his daughter to a man worthy of her love who will care for her with all of the loving attention of her Dad.

The dance with my daughter was done, the event now fades into past memories, the promise was kept. As I look back, this island paradise will remain in view for a very long time. The ocean seems a little bit more calm today and my vision seems to extend a few more miles than usual.

Congratulations to Rebecca and Corey