History #5 – diagnosis – December 21 – Day of diagnosis, part 2 — packing

January 27, 2007 at 10:16 am | Posted in AIG, Diagnosis and treatment history, Initial diagnosis of APML | Leave a comment

So, on December 21, by the evening so far I had been to a hematologist, had been told I did in fact have leukemia, been set up in the morning to go to Stanford Hospital for an exact diagnosis and to start treatment, had told Sam and my boss Emily, and and finally broken down and cried. When I got over that, what to do now? What to think?

It was a surreal experience. I had several thoughts at that time. First, it seemed really hopeless. Without a specific diagnosis, which would come in the morning, there was no way to know the prognosis and potential outcome. So I was faced with not knowing what was going to be my life for the next few years. How can you have hope for a future — any future — not knowing what was going to happen? Was I going to have an easy time with it, or go through what little I had heard — years of treatment, severe, with multiple complications? Or perhaps even not making it? It was a very difficult moment.

I tried to do anything to figure out what might happen. Normally I’m a very inquisitive person, and will find lots of info about what I have and what I’m about to do. The only thing I could do at that time was to go on the internet. A bit of advice — unless you’re at a very reputable website that is frequently updated, never get health information from the internet. At least that was true in 2001. That evening I got on the internet, searched “leukemia,” but found stuff that was either very outdated, or very depressing. I have no idea what I actually did see, but what I tell people I saw was akin to “Fred’s Fishing Bait and Leukemia Page,” where someone just tells his story — with experiences much worse than what you can ever expect. And also I remember seeing material that had an extremely poor prognosis, talking about difficult treatments and poor survival rates. Much of that was several years old. I knew I was going to Stanford, and I would have the most up to date treatment there was, so it might be better than that. But there was no way to know.

Bottom line — Listen to your doctors, and don’t rely as much on the web for information. The docs will know best and have much more correct info than what you can find on your own in most cases.

Another thought that went through my head was that I didn’t want to end up as a “movie of the week.” You know, one of those really awful unnamed disease movies, that ends with the hero or heroine, very pale, saying goodbye to crying children and friends while stoic. It seemed like a clique. I couldn’t believe that it might end like that.

So, I knew I didn’t want to think about any of this. I didn’t know what to do to pass the time that evening, to not think. So what did I do?

I went to my office. And I packed.

Our offices were scheduled to move to another part of the floor in January. I knew that one of two things would happen to my stuff — either (1) someone would move my stuff while I recovered over the next few months or perhaps years, or (2) someone would pack my stuff after I died. Morbid, I know, but it was a time for morbid thoughts. So, to save anyone from packing my stuff after I died, and to give me something to do to get my mind off thinking, Sam (who had gotten up) took me into San Francisco, and I packed that night. It was a weird thing to do, but it helped.

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