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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.

Kevin

1 comment:

Dena Heath said...

Hi Kevin,
Great post, as always. May I post this on the listserv? The words of wisdom about developing a plan and moving forward as so appropriate and I think would be appreciated by others facing their own journeys with amyloidosis.

Dena
dena.heath@att.net