On December 21, even though I had a appointment with a hematologist that I implicitly knew would change my life, I went to work. At least I think I went to work that day, I can’t remember for sure what I did that day after the Christmas party with my co-workers. My appointment was at 4 in the afternoon. When I went in, the hematologist looked at me, looked at the bloodwork my primary care physician sent, and went into the other room. When he came back, he told me those words that changed my life — “You have leukemia.”
“You have leukemia.” I knew it was coming, but it still shocked me. I was numb.
He had no way of knowing what kind, or what the prognosis was, without further testing. So he went in the other room to had made arrangements for me to be worked up at the Hemotology Clinic at Stanford Hospital that next morning. He gave me the name of the hematology fellow — I remember talking to him on the phone in the first hematologist’s office that afternoon — and directions on where to go in the morning. I was scheduled for 7 am that next morning.
I went home. Sam was asleep (he had been working nights, and had to work that night, so he was sleeping to be ready for work that night). We talked a bit, and Sam reiterated that no matter what I would go through he would support and care for me during my recovery. He was terrific and supportive. He went back to bed, since he had to work.
I then didn’t know what to do, who to call. I tried calling my sister and for some reason she was unavailable, as was the rest of my family. Then, all I could think of was to call my boss Emily in Atlanta at home and tell her, well, I wouldn’t be at work for a while. I don’t remember much of the conversation, but I do remember breaking down on the phone with her. I was crying, she was crying. She was terrific, and said she would keep in touch with Sam to know what was going on.
More of what occurred that day in the next post.
Tuesday morning, December 19, 2001, I woke up with the feeling of something in my teeth. Have you ever eaten a roll, and have a bit of bread stuck to your teeth? I did that morning, and thought it odd, since I had brushed my teeth before bed. I got a kleenex, and fished out what it was. It was a blood clot. My gums had started bleeding.
That day, I went to my primary care physician, who took blood work. The next day, the physician called me. It was a very strange conversation. He said he got my blood work back, and because of it, he wanted me to go to a hematologist. He had made an appointment the next day with a local hematologist in San Mateo. That’s all he said. I asked him, why? What was my lab results? He repeated, you need to go to the hematologist. Hmmm, I thought, this isn’t good. I asked him, could you fax my blood test results to me? He says he would. Later that day, I get a fax. It was incomplete, only the last page with results that were fine, but with several pages missing, including the main tests. I took that as a sign that the rest was something he didn’t want me to see.
[An aside — This has always been very interesting to me, in that it flied in the face of what I would consider full patient autonomy and disclosure. I understand why he did what he did — there was no way to make a certain differential diagnosis, and it really only could be diagnosed by a hematologist. In retrospect, it likely didn’t work well. I really like this physician, and I still see and respect him. But I wonder if I should have been told the full story my actual lab work and what the possibilities could have been, but I also wonder if I would have been able to handle it. You’d like to think that you’d be able to be brave and understand, but you can’t never be sure.]
That night, the AIG Healthcare group, mainly the underwriting group, had their Christmas dinner at a restaurant in San Francisco. I was invited and I went. I didn’t want to ruin the mood, bringing up what I thought I might have, so I enjoyed the night. And it was a lot of fun. One of the underwriting assistants Karina brought a camera and took pictures. There’s some great ones from the dinner. A lot of wine flowed, and a good time was apparently had. At the end of the night, as a few of us were being driven home, I made comment that I might not see them tomorrow, that I had a doctor’s appointment, and I might be sick. It was an odd way to end, especially with what happened the next day.
Quick: Pick out the person with undiagnosed leukemia from the picture below, from Bacaar Restaurant in San Francisco, December 10, 2001:
So, after finding the initial bruises in Vancouver but ignoring them, I continued on with life. I did continue to get bruises, and I found myself having trouble walking up the two sets of stairs to get into our condo in Milbrae, CA. But my consulting work, with its travel and desk work, was still doable.
The second week of December 2001 after the Vancouver trip I went to Louisiana for work. I met my manager Emily, who accompanied on the site visits. I was doing consulting with hospitals, and we went to one hospital. Months later Emily met the hospital staff we met that day at a conference, and mentioned that I had leukemia. They told her they thought something was wrong with me that day, because they had discussed after I left that I seemed pale and my nail beds appeared blue. Creepy.
I must have thought something was up, although I don’t remember it. Emily tells me that at dinner that night I told her I thought I had something wrong, since I was having bruises. She says I thought I had some kind of blood something, but wasn’t sure. She says she downplayed it and told me that she didn’t think anything was wrong. Good thing she’s an infection control/risk management expert and not a diagnostic hematologist.
While in Louisiana, I spent a couple days extra and spent time with my sister Karen and brother in law Rex. That weekend before Christmas they took me to a special dinner at Brennan’s. It was a great event. My sister also remembers me saying something about a blood disorder at that time, but also wasn’t sure what it was. I do remember walking around in New Orleans and thinking I might be sick.
One of the things I want to do in addition to just providing the history is to identify, praise and honor those who made a huge impact in my recovery. You never recover from such a devastating disease without a lot of help from a lot of people. So upcoming posts will be about individuals who made a difference.
And help takes a lot of forms. First and foremost it’s those who were there at the bedside and during the recuperation. But it also it’s anyone who send a card, called, emailed, prayed for me, or just kept me in their thoughts. There will be more people than I can ever get to, and if you don’t see yourself on the list yet — just wait, I’ll get to you.
But I have to start with Sam. Click the link below to read more about Sam after the jump.
Prior to December 2001 I was in generally good health. On the second weekend in December, my former partner Sam and I were on vacation in Vancouver, CA. I recall being in the hotel room and finding a bruise on my arm, one of those moments where you go, “Hmmm, I don’t remember hitting myself there.” I think I found a second one on my torso before the weekend was over.
Also during the weekend, at one point we were walking up a steep hill to go to a restaurant. If you’ve ever been to Vancouver, you may recall that the city is on hills from the water’s edge going to the main part of town. About half way up the hill, I had to stop. I was severely out of breath. Now, I wasn’t in the best shape — if you’ve known me, you’ll know that most of my life I’ve had a few pounds on me more than I should, at times more than others. But this time the shortness of breath was much much worse. I was not just winded, I was gasping for air. I did make it up the hill, but avoided them for awhile.
A prudent fellow might have thought “time to go to the doctor.” But I was traveling a lot for work at the time, and had a couple more large important trips to take before the holidays got into full gear. So, like a lot of people faced with something like this, I put it off.
If you’ve read the tab above to go to the “About APML” page, you’ll see I was already having two of the big symptoms of APML. But finding that out was still a few days and symptoms away.