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