Friday, February 26, 2010

Exciting News

Rebecca called last night with wonderful news. She and Jason (the boy that she likes) are engaged to be married. He proposed yesterday by hiding the ring in her favorite book which happened to be on the table when they arrived at the restaurant. Somewhere between "It was the best of times" and "It is a far, far better thing that I do" lay the surprise amidst a "Tale of Two Cities". I guess she didn't have to read between the lines.

They have set the date at the end of April to be married in Salt Lake City.

It makes sense now why she dragged him all the way to Lincoln, CA to meet us last month. Actually, it was pretty obvious that she was smitten by him. He is a wonderful young man and called me last Monday to request her hand in marriage. I was much obliged to honor his request. Again, we see our family changing. Jeremy and Alexandria both graduate in April and Jason and Rebecca will marry a week later. We will be spending some time in Utah in the Spring.

Things just keep getting better.


Wednesday, February 24, 2010

Two days in the life

If I were to describe three traits I have had from an early age they would include loyalty, curiosity and confidence. I feel remiss in not writing as often recently because I have a sense of loyalty to those of you who take the time to read the words left here. Recently, my work life has become even more busy; no surprise. Even though I am scheduled to 'work' only three day a week, my responsibilities, especially as chief of the department, keep pulling me in. Consequently, the luxury of discretionary mind-time to entertain random musings and record them here has been surreptitiously replaced by work concerns. (plus I was really sick for 3.47 weeks.)
Last 36 hours:
Left home at 6:30 to attend morbidity and mortality conference at the UC Davis Medical Center to review last months complications and deaths.
Went to the Urology Department to meet the candidate interviewing for a position here as a urologist; he didn't show. He had left me an email the night before saying he found another job. Met with my nurse and assistant chief for an hour instead. Went to my office in Roseville to catch up on all of our projects in the works: Same day specialty access for our patients, trying to get more time in the operating room, improving communication with our surgery schedulers, answering the consult phone that allows immediate access for patients to a urology specialist and developing a new ad hoc work group to improve efficiency in our department. I did this interspersed with answering many questions coming from many people. Additionally, I called or emailed 23 patients. This was before lunch. I met with my partner at lunch in the operating room to plan for staffing of our continued program using radioactive seeds to treat prostate cancer.
In the afternoon I saw my patients, continued to answer the urology consult phone (I must pick it up no matter where I am) and in between wrote notes and addressed the 50 emails I get everyday. At 5:00 I attended the monthly Chiefs' meeting where we do long term planning for the medical center.
When I got home I enjoyed half a burrito and got a call from a wonderful woman, caregiver and wife of a man from Oregon who has an identical presentation of primary amyloisosis as I did and needs a heart transplant. (that reminds me, I need to write a blog on the difference between ejection fraction and cardiac output; this is important). We all have felt alone with this disease and it really helps to connect with others.
Soon I fell asleep watching a Nova episode about what killed the Mastodons.
This morning I awoke and rode my stationary bike for 20 minutes and lifted weights in my garage with a newly epoxied floor which I organized on Monday. At work at 8:30 and started again; clinic patients and phone calls. At noon I met with my department managers and the directors of the OR to plead for more time and improved scheduling. Back to clinic to revamp our master schedules, plan future meetings and convince my medical assitants to not complain about doing immediate cystoscopies instead of asking the patient to return in three weeks.
A little while later my medical assistant found me blankly staring out the window and asked if I was alright. I responded that I was just thinking. (I was considering how to get my partners to share some of their OR time to get done the 30 OR cases that I have backlogged.)
Soon I was driving back to Sacramento to interview an applicant for our nurse manager position. Driving home a 7:00 I rocked-out to one of my favorite car-tunes, "Sweet Home Alabama" which is an immaculately syncopated little diddy.

What is my health score today? *** 90
What is my last light chain level? *** 74 mg/dl (the lowest in a year)
Did I ever think that I would be back to days like today? ***** I had always hoped.


Wednesday, February 10, 2010

Today's Beauty

Evan Joseph Trogdon

On certain days, you drive home and realize, "I accomplished a lot today." Generally for me that means that I have spent time involved in the lives of others. Not all of the interactions were easy. In truth, one of them was quite difficult, as it meant giving bad news to a friend. However, all of them were important. I realized that no matter how bad I feel, I always feel better at work, or at church or anywhere that I am surrounded by others. Augment that by the observation that I am slowly getting better from my viral infection and today was my last day of Revlimid for a while. I could easily fill 6 days a week with work considering the administrative and clinical responsibilities that now overfill my plate. I do all that I can from home, but that requires motivation, which generally returns when my health score is above 80. Today, I am at 75 and optimistic.

The beauty of the day was visiting my new grand nephew, Evan Joseph Trogdon. He was born last night to my niece Brooke and her husband Joe. The Woman and Children's Hospital, where he was born, is only about 50 yards to the East of my office. As I regarded this handsome 0 day-old, I was amazed to realize how many things a newborn must do in their 1st day of life; learn to breathe, learn to see, learn to smell, learn to poop, (what the kidneys have to do in the 1st 48 hours would blow you away and/or bore you to tears at the same time) learn to eat and, of course, get circumcised (he didn't even cry). Joe and Brooke will be wonderful parents; I am very happy for them. Evan is a beautiful baby.


Sunday, February 7, 2010

Sick of being sick

Occasionally someone will ask what my 'health score' is as I used to report it on a daily basis a year ago during my stem cell transplant. Generally I run in the 80's when thing are stable. Today I would give myself the score of 63. I am suffering from a double whammy right now. The usual crash after coming off of Decadron and bronchitis. Last week I began to have severe symptoms of bronchitis which worsened on Friday. I then got a CBC and my white cells were 1000 and my absolute neutrophil count is 300. That is too low. It should be above 2500. I have no soldiers to fight my microbial battles. I started Neupogen yesterday to stimulate my bone marrow and I hope by tomorrow that I will begin to improve. I am so very tired.
Of course, if we have learned anything it is that no matter how bad you feel today, you will get better. I count on that.


Monday, February 1, 2010

Against Traffic

Highway 37 - Novato

Early one Saturday morning I woke up with a dilemma. I was completely out of ammo for my cap-gun. I started to formulate a plan. First I needed cash, I was only five years old so I didn't have a job yet. I knew, however, that my sister, Elaine, usually had a stash of cash in her piggy bank. I still wasn't totally clear on the concept of ownership, so repayment did not cross my mind. The nearest store to us was a Safeway located in downtown Novato on Highway 101. We lived in Ignacio about five miles to the south. Soon I was out the door and on my tricycle; but I didn't want to make the trip alone so I went by my friend's house to pick him up. Willy Coates was only four at the time and at that tender age did not yet possess the sense to try to dissuade me from my Quixotic quest. We navigated through our neighborhood of Loma Verde and after about 2 miles made it to the freeway. I was moving a little slower than usual; Willy was small, but standing on the back of the trike did add extra weight, especially on Alameda de la Loma which was a hilly street. Soon we were on the Frontage Road (appropriately named 'Frontage Road') and passed a number of strip malls and a gas station. No one took notice, as this was 1964. In those days kids could play outside unsupervised without their parents being arrested. I had to make a critical decision; cross over the freeway to head north with the north-moving traffic or take the shortest distance between two points and just get on the off-ramp for the southbound lane. Actually, I didn't even think about it. I have always taken the shortest route possible. I can only imagine what Willy and I looked like to the passing motorists. A five-year old riding a little red tricycle with a four-year old perched on the back, (holding onto my shoulders for balance) moving forward in the in the shoulder, against traffic. After about a half mile, we got to the intersection of Highway 37 as is comes across the top of the bay from Vallejo, and Highway 101. The overpass was actually just being built and still under construction. As we approached, a construction worker came up to us and asked what we were doing. I explained my dilemma and my quest. Somewhat confused and consternated, he suggested that we turn around and go home. I immediately saw the wisdom of his words and altered my course. We turned around and soon were off the freeway. Just as we passed a laundromat, my neighbor, Mrs. McNair came out and was putting a load of clothes in her trunk. She saw us and asked if we wanted a ride home. Soon the trike was in the trunk and we were safely unbuckeled in the back seat breathing a cloud of second-hand smoke. I walked in the house and began my usual Saturday morning routine of watching cartoons for four hours. A few minutes later, my parents got up and went into the kitchen. I never said a word to them about my aborted adventure.
Last Saturday I was sitting in the hallway at the University of California, San Francisco School of Medicine, waiting for the Amyloidosis Support group to begin, when this memory came back to me, but with a new question. How is it that at the age of five I knew exactly how to get five miles from my house without asking anyone for directions? Is that typical for most five-year olds? I guess I have always had an uncanny sense of direction.
Amyloidosis is a very strange disease; it acts like a cancer but it is not. It is not just one disease either. It really represents more of a common final pathway, but even that path might lead to different organ involvement. This makes the amyloidosis support group a bit confusing because the main thing we have in common is the name of the disease. I have primary, the man next to me has senile cardiac, the woman across the room has a rare familial type. They are all treated differently. To become an expert in amyloidosis it requires knowing about at least two patients with the illness. We had a professor from UCSF come to the meeting and it became clear to me that no one really knows anything about this disease. That does not really bother me, but clearly everyone else is frustrated. Everyone wants the same thing; a good explanation and a plan in which they can have confidence. To get there you need a doctor who is your advocate. A good doctor is one that can tell you what they don't know and what can't be done for your disease, and you graciously accept it because you trust them and know that they care. I see the difficulty that my fellow patients have because they haven't found their advocate. This may be because they confuse advocate with expert. There are very few experts in amyloidosis and the studies are based on small groups of patients. Most of our treatment plans are trial and error and every patient is unique.
And yet, I see great hope with this disease. After 20 years as a urologist there have been millions of dollars and millions of men with prostate cancer, and yet, there has been no significant improvement in prevention or cure of this disease. However, in the last five years new options for monitoring and treating amyloidosis have prolonged lives. Doctors are no longer summarily sentencing us to death.
My journey with this disease has seen it successes and failures, miracles and reversals of fortune. But, I have always had a sense that I was moving forward in the right direction, even if it was against traffic. I have trusted my doctors and accepted their plans even when the outcome was an unknown. For me, having a plan and moving forward is more important than having an assurance that it is right. It requires a leap of faith. In the end, the sum of all this forward movement has resulted in great progress and improvement of my life.
My advice to my fellow amyloidosis patients is to be grateful in your patience, but don't be passive or angry. Get the information you need to make your decision then move forward. If one door is closed because you are already to sick, find another way. Even if your doctor is not an expert, they still can help you to find your way.
Keep moving in the right direction, even against traffic.