History – diagnosis
Published January 22nd, 2007
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.
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.
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.
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 I could stay in our condo for my recovery. (We had been having some difficulty at that time.) 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.
Published January 27th, 2007
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.
Early that morning we arrived at the Hematology Clinic for definitive diagnosis of the type of leukemia and to begin initial treatment.
For some reason I can’t recall now, Sam took me to the hospital and left. I can’t recall if he was working days, or he had to sleep for work. But my friend Susie came, and stayed with me that first day.
And it was an interesting day, to say the least. To diagnose the kind of leukemia, they were going to do two tests – one withdrawing blood, and another through bone marrow biopsy. Some of the blood work they could analyze here; other tests would have to be sent over to the University of New Mexico (why there, not really sure to this day) for special chromosomal analysis. They could tell with certainty, however, with the blood test that could be done that morning. So they took blood and began that.
The other test they attempted that morning was a bone marrow biopsy. For those who don’t know, a bone marrow biopsy takes a sample of bone marrow from the hip for analysis. To get marrow from the bone, they use a long needle, shove it through the hip bone (which is fairly close to the skin) and aspirate with a syringe. Sounds simple, right?
The staff there told me that while a little painful, it was more of a more intense quick bee sting. So for pain medication, they gave me a lollipop with medication designed for children, saying that would be all I needed. So, after I’d finished it, the Hematology Fellow came in and attempted to do the aspiration.
What we came to find out was that in my type of leukemia, the marrow produces large numbers of immature cells, multiple times more than is normal. And many of them were in the marrow, making it thicker than normal, and more than could be aspirated. So, the Fellow had difficulty.
Let me expand on that – the Fellow had a LOT of difficulty. While it did hurt some when the needle first went through, that was nothing like what came next. When the Fellow couldn’t aspirate, he would push the needle in further, sort of digging around until he thought he might be able to aspirate, and tried again. He did this several times. It was, uhm, quite painful with all that manipulation, as you might imagine. So not to long after a first attempt the Fellow stopped.
He ordered some type of pill (I think a Valium or something) and we tried again. Same result. We would have to go even stronger.
To be continued…..
Published January 30th, 2007
Around the time of the second attempt, the attending hematologist, Beth Martin, a very bright young blond woman, came back in. She had the results of the initial blood test. Now came the time I found out what was to happen with my life, or how much I had left.
You may recall in the previous posts, the night before, when I was first told about my diagnosis without knowing the prognosis, I was lost, despondent, and out of hope. Fortunately by not being a morning person, by this time all those emotions weren’t really registering. Add to that the experiences of the failed bone marrow biopsy attempts, and thoughts of prognosis and outcomes weren’t as foremost in my mind.
But now Dr. Martin came back in to tell me what had been found. And she was happy.
While it might seem odd to be upbeat in telling someone they have leukemia, Dr. Martin told me that morning that I have the kind of leukemia that they hope people have. She said there was a treatment for the subtype I have (APML) which makes this subtype much more survivable than other types of similar types of mylogenous leukemia.
She said that for six weeks I would be treated in a phase called “induction.” In that, I would have chemotherapy to kill the bone marrow, and take a pill, called all-trans retinoic acid, or ATRA. ATRA had been found to help healthy bone marrow grow back after the chemotherapy had done its job.
Specifically with regards to prognosis, she said that if I could make it through the next six weeks of induction, I would have an 80% chance of making it to 5 years disease free. The reason why the 20% figure was discussed was, mostly because of side effects of ATRA. For some reason certain patients would have a reaction in the first few days of taking it. A few others, usually older patients, have difficulty surviving the initial chemotherapy, which could be pretty harsh.
If I made it through the upcoming six weeks of induction and went into remission, then I would go into the next phase of treatment, called consolidation, where less strong chemotherapy will be provided for four courses through April. Then I should go into complete remission. If this all progressed without relapse, then I could likely resume a normal life by the summer.
Terrific news. But in the context of that moment it likely didn’t register like it should have. I did have to have a painful bone marrow biopsy, after all. And I did have to go through those six weeks of treatment.
But, little did I know that I was saved through many trials and tribulations that other blood cancer patients have to go through. While there was the possibility of relapse, the chances were good. And if I were to relapse, or have a reaction to the ATRA, then there was yet another experimental treatment that could be done before a bone marrow transplant. And for those of you who don’t know, bone marrow transplants are a much detailed and dangerous procedure, with the need for weeks of strict isolation. Basically, I didn’t know how good I had it.
I didn’t know, because not long after, Dr. Martin and the Fellow came in to yet again attempt the bone marrow transplant. To make a long story shorter (that I don’t remember that well anyway), the had to try three more times before they were able to aspirate bone marrow on the fifth try. Each time they had to give me stronger medication to ease the pain ahead of time (Demerol injections, etc.) and each time it was too painful to continue. The final time they had to put me in the hospital (which was to occur anyway, since treatment would start immediately) and give me IV morphine by drip to do the biopsy in a sedated state.
The last time was nice. I didn’t remember that one.
And it wouldn’t be that last time in my months of recovery that a morphine IV drip was used or enjoyed.