Monday, December 28, 2009
To escape, I descended underground only to find a dead-end as all three Metro Card dispensers in the 49th Street station for the N-R trains were “out of service”. I climbed back up to face endless tourists walking toward me as I headed for the 42nd street station. They were all looking up and pointing their cameras and cell phones toward the walls of the surrounding buildings to collect photos of advertisements for Twizzlers and Nivea Face Cream. I wonder how many will go to Target to print these pictures to show their friends and say, “See this three-story high M&M, this proves I was in New York.”?
Finally, I made it to the station in Times Square, and like a well trained rat, worked my way through the labyrinth there to the stairs for the R train to Brooklyn. As I waited, I heard the sound of percussion and my curiosity drew me down the platform to see a young man playing a very unusual ‘drum set’. “This guy is good.”I thought to myself. I had just missed the previous train, so I had time to enjoy his performance, and it was truly a performance. His primary drum was a 5-gallon bucket. But he also had a small snare, cymbal, chimes and maybe 8 other small and unusual percussion devices. As the station slowly filled and provided an audience, he began to interact with them and was soon rewarded with dollars and coins filling his cut-off 2 liter bottle. Directly over his head, people were paying $140 to see a musical. Within 2 minutes he had engaged an audience of 100 people, some dancing, all smiling. Then the train came and we moved on.
I love New York. To me, Manhattan is the whole world on one small island. Not the physical world, but the world of humanity. Whatever peoples and cultures exist out there, they each own a small corner here. Today an older gentleman, well dressed, emerged from a limousine as a chauffeur assisted him to the waiting doorman of the building 8 feet away. Sitting to the side of the door was a man of similar age looking down at nothing in particular fighting off the cold with layers of bags and newspaper. I don’t judge either, they are each products of their decisions and circumstances. But they reminded me of the diversity of extremes that co-exist here in such close proximity.
New York is a collage of many villages juxtaposed against a paucity of space, all pushing and maneuvering to carve out their little piece of pie that is the ‘Big Apple’. There is an energy here I don’t really feel in any other city. A part of me will always feel at home here, but New York is a walking city and I tire out after about 15 blocks now. That just means I have to stop, sit for a while and just watch the humanity go by, all hurried to get somewhere to do a million things; most of them completely unaware of the other humans that surround them. I will often pick an individual out of the crowd and wonder who they are. Are they happy? What experiences have they had? I will watch them as long as I can until they disappear into the crowd, never to intersect with my life again.
Friday, December 18, 2009
I am both proud and amazed at how diligent and unrelenting she was in her efforts to master such a difficult subject. Nobody worked harder than she did. Now she can relax and begin to prepare for a house full of family, beginning tomorrow. Rebecca comes home tomorrow. Barbie's brother, Daniel, comes on Sunday with Emma and their two children Elena and Kevin. Jeremy and Alexandria arrive soon after, while Samuel and Michelle will journey from Southern California to Lincoln the day after Christmas. Barbie's parents and brother Lloyd and his family will also be here from Utah. It will be a wonderful Christmas with so much family so close.
Today I had the opportunity to again speak at Grand Rounds at Kaiser, as we did last year, to give an update on my progress as a patient. The theme of the meeting was miracles and many doctors presented cases of patients who had unexpected recoveries where death and disaster were assumed to be the only outcome. I was the last speaker and spoke not only of the miracle of my own recovery from septic shock after the bone marrow transplant, but how this whole experience has changed me in my interaction with patients now that I have returned to work. I was grateful to be able to share what I have learned. And I still learn new things every day.
Nothing can stop us as long as we have hope. Neither the daunting volume of anatomical terms to memorize nor the ravages of disease; with hope, all things are possible.
Sunday, December 13, 2009
Tonight we attended the Youth Christmas Concert at church where Caitlin, in addition to being part of the choir and two other groups, had a solo as well. I have always been partial to altos and Caitlin sings like her mother, in that pure alto tone. She did a wonderful job. The crowd was large so we had to sit in the back. A family sat next to us that I did not recognize. Their four children were very well behaved so afterward I commented on such, knowing that parents like to hear that kind of feedback. We visited for a minute and I asked if he was there to see someone in the choir. He responded that he came to support a student in his history class, Caitlin Anderson. As a beaming father I blurted out, "Caitlin is my daughter." How wonderful it is to have a high school teacher that supports his students like that. He told me what a great student she was and I readily agreed.
Soon our other children will be home and we will have one soprano, two altos, one tenor and two baritones. It's time to sing.
Thursday, December 10, 2009
And then Dr Weisshaar began the traditional roll-call. The old guys stood first; a transplant done 22 years ago, 20, 15 etc... These guys looked great. We kids all looked am them with childlike hope. "Maybe I'll be at the party in 20 years." Each year had its graduates, some only had one. My year, 2008, was well represented. But 2009 was impressive; 22 heart transplants. Remember,this is just from one Kaiser clinic that serves only Kaiser patient in Northern California. It was not that there was more people with heart disease this year, there were just fewer people dying from it. This is due to the tireless efforts of our transplant cardiology team, the surgeons at Stanford and the Northern California Transplant Network with their amazing ability to match families in that most difficult moment with well trained teams and earnestly waiting patients.
Sir Isaac Newton gave us the first law of thermodynamics which teaches that every action has an equal and opposite reaction; a man's life is given up and life is given to a new man. One must die so that one can live. A hard reality to digest when first considered for a transplant, but then the social worker, Janet reminds us that death happens every day. Our wishing for a heart does not cause it. Then you accept it and prepare yourself. One day the call comes and as the heart flies in your dream fly with you on you last trip with your old heart. Most of your heart is then removed and the new one is sown to what is left of the back wall of your right and left atria. Your aorta is sown to his aortic root; pulmonary vessels accept and return oxygenated blood to the alien organ and, on its own, it begins the first beat of hundreds, thousands, millions. My metronome is set at andante and my dynamics forte.
We honored those who had passed in the last year and welcomed the families of a few of the donors who had so courageously given, in the words of Lincoln, "The last full measure of devotion." In the silence that followed we all recommitted to live our lives to honor their legacy.
It was a joyous reunion,
The we had a raffle fundraiser, generally I never win, but today I won two. First a bath spa set in a beautiful basket. That was for Barbie. I was just about to leave when I stopped to great Yolonda and her family. She is like me; AL Primary Amyloidodis with a heart transplant, waiting for a stem-cell transplant. She is the third. And then I heard my name from the front. 'Kevin, come get your prize' As I walked forward I noticed Dr Weisshaar hold a complete Wii Console with sports bundle. I was in shock. I took the mike and blurted out something like "With this I can help my urology patients NOT to Wii, Wii, Wii all the way home.
In the end, we all looked at each other and were amazed that we all looked so healthy; life goes on and on and on and we build our homes in our new normal.
Monday, December 7, 2009
Friday, November 27, 2009
The Legend of International Barbie Dison Day
Once upon a time in a land where the oaks were fair there was a province called Cordova. Every year the people of the land would have a great feast on Thanksgiving day and, as was customary, they would also take off the following Friday to relax and digest there food. Everyone knew what a 'drag' it was to go to work that following Friday and hoped they would never have to.
There was in the land a king who was a very austere and tight man. As a matter of fact, many gave him the nickname of "King Scrooge". Well, old King Scrooge decided that it was a great waste of time for all of his subjects to loaf around that one Friday of the year if they were not celebrating something, so he decided to put an end to it, unless the people could find a good reason for celebrating.
Well this created no small stir among the people. What were they going to do? If they couldn't come up with a good reason for celebrating the forth Friday of November they would lose it forever. The elders of the town decided to hold an emergency council to see what could be done. They put their heads together and came up with numerous ideas such as National Digital Watch Day, Ground Squirrel Day, Opening Day for the Zebra Rodeo, etc … none of which seemed a feasible reason for celebration. They were stumped.
Just when they were about to give up a young lad named Ray ran into their chambers and exclaimed, "I have the answer!" Immediately the room was silent and all eyes were focused upon Ray. The chief elder broke the silence and asked, "What is the answer, pray tell?"
"Come with me and you'll see," was his reply.
Little Ray then took the council to a beautiful field near the edge of town. When all of the sudden he stopped a whispered, "Listen."
As they listened they could hear a beautiful sound. It was the singing of a young girl. The elders turned to see where it was coming from and as they did they saw a lovely young girl of pure countenance. Suddenly she felt their presence and stopped her singing as she turned to see who was there. The chief elder then came up to her and asked,
"What is your name?"
"Barbie," she replied,” Barbie Dison." Then the chief elder had an idea.
"Come with us”, he asked.
She innocently followed them as they took her to see the mean ol king Scrooge.
When they arrived at the palace, immediately the chief elder told Barbie to sing once again her beautiful song. As the strains broke the silence and floated up through the castle windows a strange sensation came over the king. He immediately went to his window to see what it was. As he did he saw that it was this fair lass, Barbie Dison, who had created such a wonderful noise which miraculously made him feel mellow. He then declared in a loud voice,
"From this day forth, the province of Cordova will recognize the forth Friday of November (for that's the day that this all occurred) as International Barbie Dison Day to commemorate all the happiness which she has brought into the world.
Then all at once the people cheered for they would continue to have the day after Thanksgiving as a holiday. And they all lived happily ever after.
Sunday, November 22, 2009
If these songs are familiar to you, just hum them in the background as I catalogue their relevance:
***WARNING*** Listening to music in the car can be dangerous to your emotional stability
1: 100 years by Five for Fighting
It is March 2004. I had just told my boss, Dr Weiss, that I was leaving Yale to return to California. While driving to Hartford, I experienced something I had never really felt before; doubt. I knew we needed to move, but I really did not know why. This song came on the radio to punctuate this mid-life crisis.
2: Adagio for Strings by Samuel Barber
I was at our annual church girl's camp. Two days prior I learned that I had a serious heart condition that gave me a prognosis of 5-10 years. The word amyloidosis had yet to be mentioned. All year I had planned on going on the back-packing trip with Barbie and Caitlin, but I wasn't strong enough. I remained in camp after they left for the 2 day back-country trip. I figured that at least I could go canoeing. However, to take out a canoe, the camp rule required that I pass a BSA swim test. I couldn't do it. I pleaded with them to let me go out in the canoe; but a rule is a rule. I walked away a broken man. All of my favorite activities were slipping away one by one. A few days later, the waterfront director had mercy on me and said that I could go in the canoe if I had a partner that was a swimmer. Barbie has an aversion to cold water, but bravely took the swim-test so that she could accompany me. It was a beautiful moment in an otherwise painful week. My sister-in-law Rachelle, while walking along the shore, saw us and took a picture. It hangs here in my office and reminds me of that moment as the swelling of the strings reach their climax in this adagio.
3: You Are Loved (Don't Give Up) by Josh Groban
Four days later I finally agreed to let Barbie tell others what was happening to me. I had no idea how alone she felt having to handle this by herself. She sent an email to family and close friends. The response was immediate and overwhelming. The resultant communication of love, concern, prayers and friendship sustained us through are most difficult moments, and continues to do so today.
4: Viva la Vida by Coldplay
As we drive home from Santa Clara for the first time, this is the song and album we listen to. The heart biopsy was just done and I was told by Dr Weisshaar that my heart only pumps at half capacity. When I ask her if I need a heart transplant she responds, "Only if you are healthy enough."
5: Better Days by The Goo Goo Dolls and
6: Make This Go on Forever by Snow Patrol
It is August 12, 2008, a Tuesday. After a month and a half of never leaving my side, Barbie departs for San Diego to celebrate Samuel and Michelle's wedding. I sit alone in my hospital room with a constant infusion of Dopamine to keep my heart going while I wait for a new heart. As I listen to random songs from Pandora.com, these two songs play one after the other. I immediately write a blog of how much I miss Barbie and she writes her response. The feeling of loneliness is then augmented to surreal proportions when 3 hours later I am offered a heart at the Mayo Clinic. I know that if I accept, I will be there alone. At this moment I give up complete control of my life to others and rely solely on prayer.
7: Waiting by Caitlin Anderson
Fast forward one week. The heart at the Mayo Clinic is turned down. Two days later I am at Stanford receiving a new heart. August 20, the day after my 49th birthday, Caitlin and Rebecca come to visit me and Caitlin sings this song, accompanying herself on guitar. She wrote it for my birthday, thinking that I would still be waiting for a heart. Now I am only waiting to go home.
8: The Riddle by Five for Fighting
No one memory in particular; this one shuffles up on my I-Pod on our many drives to the Bay Area and I like the message.
9: Hide and Seek by Imogen Heap
While driving Caitlin to piano lessons I get the call that I am in heart rejection for the 3rd time in one month. I fear that this will prevent us from traveling to Utah to see Coldplay and have Thanksgiving with our kids.
10: Death and All his Friends by Coldplay
I am sitting in the car at Lincoln High School waiting for Caitlin. As I listen to Death and All His Friends I think of the bone marrow transplant that will begin the following week. I know the risks, and I accept them, but I still feel an anxiety about what might happen.
11: The Moment I Said It by Imogen Heap
The song hit me as I crashed physically last June. I thought it was my untreated amyloidosis, but turned out to be a very bad cytomegalovirus (CMV) infection from which I recovered.
12: Home by Marc Broussard
I heard this on Barbie's I-Pod on one trip home from a doctor appointment. I loved it. Turn it up loud and enjoy. It reminds me of all of the good times which greatly out-number the tough ones.
13: True Companion by Marc Cohn
This is dedicated to Barbie, my true companion; enough said. You'll have to listen on your own.
Thursday, November 12, 2009
Of course, my work in erectile dysfunction goes back to my days at Yale where I not only treated hundreds of men, but was instrumental in developing both the lectures to the second year class on impotence, but also the core curriculum course of Human Sexuality to the fourth year class. My approach, the pragmatist that I am, generally focused on normal heterosexual male issues longitudinally. I focused on changes over time.
I took a very different approach yesterday as I gave a lecture to the heart transplant support group at the Santa Clara Kaiser. The title, "Intimacy after Heart Transplant" I felt this was apropos as a heart transplant both improves things through the increased flow of blood/min.; it also has inherent complicating factors. I felt that by naming these often avoided issues, the couples present might begin difficult dialogues. This particular lecture, however, was unique for me in that while speaking, I never lost cognition of the fact that I was also a member of the audience.
There are many things in life that we avoid speaking of because they a hard and require risk. Sometimes, though, it is essential to begin the discussion if we are ever to fix the problem. I hope I helped someone onto that path. The proof is in the pipeline.
Sunday, November 8, 2009
Reduce Your Stress Levels by 100% in Two Easy Steps
Remember on June 17th, 2007 what happened to you? Of course you don't because it didn't happen. At 2:37 P.M. you were just about to leave to get to your appointment early, but you could not find your notes. You reprinted them which took an extra 7 minutes. Two miles from your house, you drove down a hill without incident. If you had left seven minutes earlier, while swerving to miss a man that drifted into your lane while texting, you drove off the road and hit a tree. You died at the scene.
Of course, you didn't die because on that day you were running late and now remain as 96% of most people who do not truly grasp the reality of their own mortality. Why does this matter? Because when you do grasp this reality, you don't sweat the small stuff, and most of it is small stuff. How many times has your life already been saved and you still don't see it? Next time you feel anger coming on as you coast behind an octogenarian doing 37 MPH in a 55 MPH zone silently say to yourself. "I am in no hurry, I would have lost that time at the next red light anyway," and relax. I probably say the same thing to myself now at least ten times a day and I don't feel stress anymore.
Give your life away. (This actually has some sub-steps)
Sub-step a. Give away your ego
Relinquish your need to be right all of the time and add to your vocabulary phrases like, "You are right." and "I really agree with you." Stop correcting irrelevant flaws in language and logic of the person that is speaking to you. Actually listen without just waiting for the other persons lips to stop moving so you can blind them with your brilliance.
Sub-Step b. Give away your need for stuff
Get rich slow by spending less that you possess. If you are already in debt, make a plan and spend even less. (Debt = Stress)
Sub-step c. Give away your need for total control
Yes, your boss can be annoying; but we all report to someone. Unless you are that rare person that has total control and you end up making a movie like "Star Wars, Attack of the Clones" Let go of that need to control and you might learn something from the most unlikely person.
I lied, there are actually three steps (in addition to the sub-steps of step 2)
Buffers blunt the pain of unexpected situations and give you room to maneuver and recover.
Buffers are essential to avoiding stress:
Financial Buffers (Savings, security etc...)
Good Will Buffers: Kind acts that are deposited in your charity bank so that when you say or do something selfish people will still like you and forgive you.
Trust Buffers: A developed pattern of reliability and responsibility so others will afford you the freedom to make your own decisions.
Space Buffers: Don't drive too close to the car in front of you at 75 MPH on the freeway.
Apply now to follow these 3 simple steps and remove all stress from you life. It is an unproven fact that without stress you will live longer, be better looking and stop over-eating. If you still doubt the veracity of this fool-proof system, I refer you back to step one.
You are still alive. Be grateful for every breath.
Monday, November 2, 2009
Not much to report. Other than the expected ups and downs from my chemo drugs, life is getting somewhat routine. Isn't that cool. Speaking of cool, it is way to hot for November. It is 76 degrees outside today. I think I'll go for a scooter ride. Barbie took a break from studying anatomy today so that we could go out to lunch. We ate at Crush 29 which is a half mile from my office. The food was quite good. I am a big risotto fan and the seafood risotto special was to-die-for. I am considering dropping my weekly dose of Decadron from 40 mg to 30 mg. I could jump off an 8 foot roof and probably not get hurt. However, a 16 foot drop usually breaks something. That is what I feel like two days after 40 mg. My doctor said there may be no therapeutic difference between the doses, so I might consider a shorter jump.
Jeremy flies to Saint Louis today for an interview at Washington University for medical school. 28 years ago this month, I made the same journey. It was also my first interview. I hope it goes well for him; it is a great medical school. Jeremy knows the place well from when he was six and we lived there when I did my fellowship.
We have come full circle in yet another arena.
Sunday, October 25, 2009
The very next day I was seeing a patient of mine in the clinic who has an incredibly difficult decision to make. She has metastatic bladder cancer and has already failed one course of chemotherapy. The toxic drugs made her life a living hell and she could not complete the course of treatment. The cancer is now in her lungs and her oncologist has suggested some experimental treatments. The potential for success is unknown. The expected side-effects are definitely known.
As she shared with me the acknowledgement of her own limited lifespan, she expressed guilt. Flabbergasted, I asked how she could feel guilt about dying? Once again, her thoughts were not of herself, but rather for her children. They wanted her to do everything possible to continue her life, even if that life is, for her, miserable. She felt that to die without trying everything might let them down.
We spoke of a balance in the middle; doing just enough to prolong quality time without doing what will not work and stealing those good days that you have remaining. Unfortunately, it is impossible to know exactly where that balance is.
I do not generally feel guilt, but I do have a strong sense of duty. Maybe it is the same under a different name. When I commit to something or someone, I cannot let them down. Last June it was clear that the bone marrow transplant failed to control my amyloidosis. I was disappointed for myself, however, even more so, I was somehow disappointed that I might let down those who had gambled on putting a heart transplant into an amyloidosis patient. I was the first primary amyloidosis patient to get a heart transplant at Stanford in many decades. I was fully aware of the reason that this practice was abandoned. There were many, and still are, who question the prudence of giving a heart to someone who is incurable. This, of course, begs the question, "How long must I live to make this great effort on my behalf worth it?" I felt this even more poignantly when soon after I became very ill with cytomegalo virus. At the time, I mistakenly thought that my disease had irreversibly progressed and that I was going to die soon. The thought that crossed my mind was that if I die, they might think twice before offering another heart to an amyloidosis patient. I felt it was my duty to live long enough, as in the words of Tom Hanks in "Saving Private Ryan", to 'earn this'.
How does one measure the worth of a life? Is it in the number of days or rather what you fill those days with?
I have seen well meaning family members demand that everything be done to add more hours and days to a life that is ending. Who decides when any individual life has satisfied the purpose of its creation?
I guess this is why there are feelings of guilt surrounding the act of dying. It is because we don't know these answers and we wish that we did.
My father died well. he was surrounded by his children and my Mom and quietly passed at home. However, six weeks earlier, his oncologist offered him one last course of chemotherapy. We all knew that it would not work and that he would be miserable if he took it. The offer was more out of obligation. Initially, my dad wanted to proceed and seemed annoyed that we might question the value in the treatment. I suggested to him that since he was doing so poorly that day, the drug were certainly make him worse, but that if in a week he had improved, we could start the chemotherapy then. He understood and accepted that plan; because in it there was still hope. I certainly still had hope that he would improve. He never did. But that was OK as his last weeks were at home with his family. I know that he had fulfilled the purpose of his creation. Filling more days would not have changed that.
So what do loved ones do that have to watch with powerless guilt as a friend or family member begins down that final path? They must understand that the dying feel guilty too. They need to listen to the words to painful to utter, to be patient with decisions so irrational and difficult to comprehend, and then we can remove those shards buried along our final common pathway and allow our last goodbye to be sweet.
Wednesday, October 21, 2009
Notwithstanding, I felt great, physically, when I woke up. I got to work and got my blood drawn for Prograf and Cellcept levels and noticed that they were doing Swine Flu shots. 3 minutes later, the needle was in my arm. Now I don't have to worry about that anymore. I am generally not paranoid, but I really, really, really did not want to get swine flew. After what happened with the CMV virus last June, I have been waiting for the vaccine with great anticipation.
The pig has flown.
All of my patients today were just great people; those of my old patients, additionally grateful to see me. With the feeling very much mutual. I then got to do a great surgical case, laser lithotripsy of a kidney stone.
I got home a little late (a 10 hour day) to find we were going out with our great friends, the Boatmans, to our favorite restaurant, Orchid Thai.
We ordered the usual: Crispy calamari salad, Tom kaa gai (Coconut soup), Laab (a minced chicken salad with lime, cilantro, mint and Thai chili served and scooped with cabbage leaves) and, of course, the dish to judge all Thai restaurants, pad kee mau (Drunken noodle). They were all served fresh and perfect tonight.
The Boatmans had just spent the weekend at cancer camp with their 7 year old son Tyler who has metastatic Wilms tumor, and their 3 others boys, Jack, Tanner and Robbie. It was a great experience for all of them. Later as I was describing my meds and labs to Maria, (using unfiltered medical jargon), she chuckled as she commented, "Isn't it amazing that I know exacting what you are talking about." We share a lot in common these days.
While in Raleys buying fruit, I saw Mallomars (chocolate and marshmallow cookies mad with real chocolate). These are generally sold only on the East coast during the non-Summer season. Of course, I bought a package. I love any combination of marshmallow and chocolate.
Tomorrow, we again step into the unknown. I will start Revlimid again, even though I know it puts me at greater risk of heart rejection. Eight years ago I remember saying to a medical student at Yale, "It is the risks we take that truly make us feel alive." Somehow that feels hauntingly more apropos today. Occasionally we pass through an experience that exists in a heightened sense of reality. This is one of them. We are making some changes in our new and made-up protocol. I will only take 5 mg daily for 21 days. And instead of one week off, I will restart the next course 5 weeks later to give my heart time to recover. Again, a guinea pig ( I sense a pork theme today).
I have had many good days recently, but today just felt great. You can't beat that.
Monday, October 12, 2009
For 2-3 weeks I have been feeling weak. This was why I ended up getting a heart biopsy last week to assure that it was not from rejection. Fortunately, it was not. I have improved in the past few days. It may have been a virus. I am now ready to begin Revlimid again, at a lower dose, to keep my amyloisosis controlled. I will probably be on one month then off one month. Hopefully, this will not lead to heart rejection. My light chains only increased a little since I have been off Revlimid for over a month. I was happy to see that. I am content and at peace because nothing has been left undone.
Wednesday, October 7, 2009
Some time ago, Kent from New York commented on his progress with amyloidosis. We conversed over time as he prepared for the possibility of a heart transplant. I was glad to share my experience and give him hope. He was still working, but could feel himself slowing down. His close friend, Elise, informed me last week that he has died. This is hard for me. I feel like amyloidosis is this enemy that we fight every day. It is not like fighting a conventional army that you can see and plan for. Rather, it remains insidious, like a terrorist, attacking unexpectedly.
I know that Kent from New York fought a good fight. He did not give up. But I can't shake this sense that he was somehow blindsided by this nasty deposition of unconscionable warped proteins. How they move within us without regard to the damage they leave in their wake. They infiltrate not only the heart muscle, which can lead to slow death, but also attack the wiring at the center of the heart leading to a sudden fatal arrhythmia. Is there no defense against this?
We who share this diagnosis, and even more so, those who care for us with this disease, keep this fear silent within us so as not to tempt fate. Amyloidosis is an orphan diagnosis relegated to a dark corner of medicine; mentioned in medical school and promptly forgotten by most doctors. Where is the celebrity that champions our cause? It is not only rare, but affects each patient so differently that any attempt at discovering its modus operandi is hampered by varied responses in rare patients allowing for little statistical power in planning a unified attack.
Sometimes people ask me what is my prognosis. I honestly don't know. Does that somehow make me like everyone else; blindly living every day with sublime ignorance of their own mortality?
Sometimes I wish that I could respond, when asked, that I have cancer. At least with many cancers, there is a cure; or it only affects one organ in your body. People understand cancer. They don't know where to catalogue amyloidosis; and describing it becomes cumbersome.
Just because I share these thoughts does not mean that I am ever without hope, nor am I sad for myself. I still find incredible joy in every day. I am however, sad for Kent from New York and for his friend Elise. Because I will move on toward the unseen ocean and leave him behind. And yet, it may be that my sadness for him only stems from the briefness of my encounter with him. He may not have shared my sadness, because, like me, he lived a full and happy life of no regrets. If we truly could know the complete essence of any one person, would we mark their absence differently?
My hope remains strong; if I gave Kent hope it was not in vain. But he will be missed as are all of those whose battle against amyloidosis has ended. My heart goes out to all of them and to those who continue to remember and to love them.
Tuesday, September 22, 2009
I was 'on call' for the first time in 15 months today and was covering for my partner who is out of town. I saw his patient this morning who had a procedure on Friday to control bleeding from his prostate. He was fine and we discussed possibly sending him home tomorrow. At noon I got a call that he was 'coding' meaning that his heart had ceased to beat and he was receiving CPR. I arrived to find the code team fighting frantically to save him. They worked heroically, each nurse taking his or her turn giving chest compressions while the hospital physician was directing the effort. He didn't make it.
I knew that his wife and daughter were on their way and found them in the hallway. My search for a private room to speak with them came up empty as they sensed the seriousness of the situation; I could no longer delay. Their emotions mounted as I explained the events as they unfolded, ultimately, however, you cannot avoid that moment when you flatly state, "He didn't make it" or "He is dead." Euphemisms don't soften the reality. If there were a better way to say it; I wish I knew. I felt horrible. They could not handle the immense gravity of receiving the worst combination of words that can be strung together in any language. I stood there silent, feeling completely impotent in any attempt I made to try and comfort them. I did not know what to do. Finally the nurse came and had found a private room where I could take them where their uncontrolled grief could be expressed.
In every crisis there is often someone that those suffering can turn to who remains their link with reality. Soon her son arrived and he became that rock for her. I was grateful for his strength in that moment. It was as if he became my translator for the rest of the family.
As I drove home today, I wondered if I could have handled the situation better. Probably, but I still don't know how. I remember a similar situation when I was the trauma surgeon in the ER at UC Davis many years ago. A 16 year old boy was brought in with a fractured spine from an automobile accident on Interstate 5. He was the only survivor. His mother, two brothers and grandfather were killed instantly when his grandfather fell asleep and drove into the back of a semi-truck parked on the side of the freeway. It was my task to call the father in L.A. to tell him about his surviving son. He then asked about the others. My first response was to say that they were seriously injured. The nurses in the room with me were saying under their breath, "You can't tell him they are dead over the phone." But eventually he asked, "Fatally injured?" I could not lie. I only said, "Yes." I heard only sobbing for what seemed an eternity. Finally, I got the number of his father and pleaded with him to stay home until I could contact his dad to get to his house. I couldn't imagine him alone with this burden that I had laid before him.
It doesn't get any easier 20 years later.
I was once in a seminar on death and dying where they asked "How do you want to die?" Which was followed by an academic discussion on he subject. But today I learned that that is the wrong question. If someone were to ask, "How do you want your spouse to die?" I guarantee that the dialogue would not only not be academic, it would not exist. Who can fathom such a question? Yet, it is the survivors who must live through that unanswerable query. It is not a question of age or being at the end of a fulfilled life, death is death. Ultimately, our faith will give us strength. But that moment of finality can be terrifying for many. Is it better to go quickly and unexpectedly or be prepared with a slow and painful demise. I thought I knew the answer to that. But previously I only saw it from the perspective of the one dying, not the one letting go. I saw it differently today.
Wednesday, September 16, 2009
I then walked over to the hospital to see a patient in whom I had removed her bladder a year and a half ago for cancer. Her disease is metastatic now and she has had a number of complications. She had to stop chemotherapy because she felt so poorly while on it. I asked about her, and her husband asked about me. We have had many shared experiences in the last year. I know how she feels. Yet, she remains hopeful, and so do I for her. I silently mused on why do these things happen to such nice people?
While conversing with her my phone rang; the area code was 408, Santa Clara. It was my biopsy result. I always know the news immediately by the tone of the greeting. This was good news. The heart biopsy showed 1R/1A, minimal rejection. I tried hard not to be emotional in front of my patient, but I was so relieved. She sensed my reaction and smiled at me in her show of understanding. The lines of doctor and patient became blurred for a moment. I reassured her that a time would come in the near future when her daily activities will not include conversations about her health. She laughed and said that she had one of those days a few weeks ago and how nice that was.
I am feeling quite well as the steroid crash on Monday is slowly resolving. I'll be back to the chain gang, breaking stones, tomorrow and Friday.
Wednesday, September 9, 2009
Nines are really cool because any number divisible by nine, when the digits composing the number are summed, ultimately result in nine. (each multiple digit answer must also be summed).
So today is an interesting day.
In China, nines are considered lucky, however, in Japan, the opposite is true. Today in surgery I was wearing a cap made by my partner, Dr Takahashi. She made it for me when I was bald after the bone marrow transplant. The Japanese characters in the fabric represent good health and prosperity. However, the number nine in Japan is considered bad luck. Oh, those opposing forces at work on such a day. The number nine in Japanese is a homonym with the word for suffering.
Generally, I am seen as a lucky guy. Today the nurse from the cardiology clinic called to say that my heart biopsy showed moderate rejection. this would be considered unlucky and/or suffering. The pathology report listed me as a 2R/3a. The last time I showed this level of rejection was the last time I took Revlimid in October 2008. What makes this quite troubling is the realization that Revlimid is the only treatment that has actually improved my amyloidosis. Yet with it, I seem to go into heart rejection and, without it, my disease would progress and ultimately damage my heart. I am between a rock and a hard spot without a Holmium laser. Now these concerns may only be theoretical, since originally there was some doubt as to the causality of my previous rejection with respect to Revlimid. The next step will be poorly founded in real science and be based on experience, intuition and educated guessing on the part of my doctors and me. We will aspire to a new homeostasis (my word for the weak).
I am now on solumedrol (the zombie/statue drug) 500 mg.
Let's play with the numbers. Normally I take prednisone 5mg every day. this is equivalent to 25 mg of cortisone, the basic steroid dose.
This morning I took 40 mg of decadron(dexamethasone) equivalent to 267 mg of prednisone or 1333 mg of cortisone. This afternoon I received 500 mg of Solumedrol I.V. This is equivalent to 625 mg of Prednisone or 2500 mg of cortisone. For a grand total today of 892 mg of prednisone today or 178.4 times my usual daily dose. I will be wired tonight. I should see if the San Francisco Giants want to hire me. If anyone has any questions tonight at 3 AM, call me, I'll be up.
We will find a plan and a new homeostasis. That much I am sure of.
Sunday, September 6, 2009
Thursday, September 3, 2009
This creates possibilities and experiences never before imagined. I had just such an experience last Monday.
There are many people that follow this blog. Often there are families looking for information regarding Amyloidosis and somehow stumble into our domain. In the past, everything we could learn about any given disease what relegated to what experts might publish in peer-reviewed journals. The audience was usually other professionals in related fields. Now we exist in a world where individual patients and caregivers can share their experiences, augmenting the overall understanding of a disease, now to a personal level. This has a unique and distinct value that was previously unavailable. This is especially poignant with a rare disease such as amyloidosis, given that it is unlikely to have a personal encounter with another amyloidosis patient randomly meeting them in the checkout line in the supermarket.
Felipe, from Los Angeles, Chile, which is about six hours south of Santiago, found our blog after his mother was diagnosed with amyloidosis. It took four years to arrive at the correct diagnosis in her. He found our experience useful, but needed more specific information to help in their decision-making. He sent me his email address and we began corresponding directly. After attaching his mother's medical records, I was able to connect with he and his wife, Marisol, in a virtual "house call' through Skype, and speak with them face to face . This was an absolutely incredible experience. The first half of the discussion was in Spanish and the second half was in English, and some of it was an admixture of both. I learned to speak Spanish as a missionary for my church in Buenos Aires, Argentina from 1978-80. Felipe, also a member of the church, served in the same mission in 1996. The common connections between humans on this planet far surpass our differences. We shared experiences about our families, our missions and of course the challenge of dealing with our common disease. I spoke as a patient, having personally experienced the throat swelling, hoarseness (his mother has lost her singing voice which she has employed these past forty years to bring the Spirit to church services) edema, nausea and weakness that she is now suffering through. I spoke as a doctor describing the risks and benefits of each of the treatment option available to her. She has AA Amyloidosis, secondary to multiple myeloma, (a cancer of the plasma cells), however, the chemotherapy regimens are the same for primary AL amyloidosis. I reassured them that the plan that their oncologist had prescribed made sense and was worth the risk of potential side effects. I could sense their relief.
I never imagined that I could have such a personal and intimate connection with a concerned family 6000 miles away. This is what web 2.0 has now created; a world in which we are all interconnected.
I know that there are some that fear the loss of the privacy in this wide open world of the web. Given the predators and conspiring men who have always taken advantage of each new medium, these concerns are not completely unfounded. However, every worthwhile endeavour always has its inherent risks, from which greatness is ultimately discovered. I am grateful to have been able to be a small part of this. I feel that I am truly the beneficiary.
If any reader of this blog has specific questions that they would like to discuss in a more private environment, include your email in a comment and request that it not be published and I will respond personally.
Wednesday, September 2, 2009
I love my job, no, really, I do! I have been known to employ sarcasm on occasion; and limited only to verbal communication bereft of vocal intonation; I do love my job. Mostly I enjoy sitting down with patients and helping them through their problems. To answer the question that I was asked so often, I am a better doctor after being a patient. But I wouldn't recommend that other physicians employ this self-improvement method for themselves. I listen better. I always give hope and occasionally I share my own experience with them, but only when I feel that it will help my patient to be more at ease. I don't compare. I don't want to become the 'Me Monster'. The day goes by so fast and it is already 5:00 P.M. and time to ride my scooter home.
I think that riding a scooter is just as cool as riding a Harley. My helmet goes oh so well with my Oxford shirt, tie and Sperry Topsiders.
The sunset was amazing tonight. I rode past my neighbors, Jennifer and Frank, and decided to stop to have her come out and watch. A minute later a very wet and very naked 18 month old boy runs out, escaping his evening shower. She was embarrassed but I reassured her that, as a urologist, I am professionally trained to deal with these situations. I didn't charge her, however, for the exam. I continued to ride to the top of the hill where there is a 360 degree view for 100 miles both East and West. As the sun set over the Coastal Range on the west side of the San Joaquin Valley the cloud colors became vibrant and illuminated. To the East the rising moon was surrounded by clouds of orange, pink and magenta. (if I knew girly names of colors, I would use them too.) The warm dry air served to invite the local fauna as this happy traveler arrived home with bugs in his teeth.
Barbie started school on Monday and is very stressed. She, through divine providence, was able to add Microbiology only to have her professor's stern warning not to take anatomy concurrently. Asi es la vida, que va hacer. I have complete faith in her that she will succeed; veni vidi vici.
My low white count last week was quite effectively treated by Dr Sardar as he gave me Neupogen, which I self-injected for three days, to bring my count back up to 6,200 from 800.
Another bit of good news, my light chain level this cycle came back at 124 mg/l (or 12.4 mg/dl). It is now at 33% of what I started at prior to the Revlimid, Cytoxan abd Decadron. All in all, it has been a good day.
Tomorrow we discuss Web 2.0
Wednesday, August 26, 2009
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.
Sunday, August 23, 2009
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.
Sunday, August 16, 2009
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'.
Wednesday, August 12, 2009
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.
Tuesday, August 11, 2009
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.
Thursday, August 6, 2009
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.
Tuesday, August 4, 2009
Thursday, July 30, 2009
We have had many visitors this week, both family and friends. I am one of nine children in my family. Monday we had a family get-together at our house that included 7 of my 9 siblings. Five of us live in Northern California. Additionally My sister Mindy and her family came from Ohio and my sister Elaine and her family were visiting from Utah. It was a wonderful evening to re-connect and I have never seen so many people in our pool at one time. (It was 102 degrees).
Tuesday, Barbie and I went back to Santa Clara for my 1st annual heart transplant evaluation. This takes two days because it includes an extensive doctor visit, an ECG, chest x-ray, multiple labs, and an echocardiogram on day one. Day two I then underwent both a right (through the femoral vein) heart catheterization to check pressures and do a heart biopsy; as well as a left (through the femoral artery) catherterization to check the coronary vessels. In sum, the heart looks great. The vessels are wide open, the pressures are in an excellent range and the biopsy just came back showing 1a or very minimal rejection. This is doubly reassuring since I am just finishing my first course of Revlimid which was thought to have caused my severe heart rejection back in November. However, this time they treated me with cyclophospahamide to reduce the chance of the theoretical risk of rejection that Revlimid might have. It worked. This is quite significant in that it means that post heart transplant patients can have Revlimid as a treatment option. Next week I will get a light chain level to determine if the Revlimid was successful in controlling my amyloidosis.
The trip was even more memorable as Barbie suggested we not stay in Santa Clara (yet again) so we found a resort in Santa Cruz called the Chaminade Resort and Spa and spent the evening walking on the beach and found ourselves mesmerized by the flocks of brown pelicans diving and feeding in the surf just off the beach. We then drove down the coast to Capitola and dined at the Shadowbrook restaurant. It was a beautiful old three level building built on a hill overlooking a small inlet of water. The food was divine. I had a fillet Mignon with Bearnaise sauce and potatoes gratin and Barbie had the chicken Saltimboca with baked polenta. We shared a fresh peach cobbler with cinnamon gelato. It was strange to recollect that only four weeks ago I could even look at soup without a sense of nausea. I feel the miracle of good health and it feels wonderful. Again I am left with a profound sense of gratitude for all of the prayers and fasting on my behalf. How amazing it is that while I daily struggled to eat, there were other that chose to go without food so that my appetite might return. I haven't felt this good in recent memory and I have a good memory. I look forward each day to get up and go to work. Life feels so normal. The only downside is that my warped sense of humor has returned and I am driving Barbie crazy with my quips and puns. Things have reversed as the health is good and the humor is sick.
May this continue forever.