History #7 – Diagnosis – December 23, 2001 – good news but more biopsies

January 30, 2007 at 5:54 am | Posted in APML, Diagnosis and treatment history, My initial treatment -- induction, Stanford Hospital | Leave a comment

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.

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People who’ve supported me #3 – Susie

January 30, 2007 at 5:31 am | Posted in Susie Engard, Those who supported me during my recovery | Leave a comment

 

Another really really really important person who I have to honor for her support is Susie Engard.

Susie in Maine, October 2002

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I met Susie as a long time friend of Sam, but in just a very brief time after meeting her we became really good friends. Weshared a joy for hiking in the Bay Area hills, movies, and, of course, eating. Within a few months of moving to the area a typical weekend involved doing something with Susie.

But for purposes of my initial treatment and recovery, Susie was the one who was there that very first day at Stanford. She was there for most of those events of that day, including both the very good (the very good diagnosis and prognosis) and the very bad (the five, count ’em, five bone marrow biopsy attempts that first day). And during the subsequent hospitalizations, she would frequently come over in the morning after work (she was also working night shift as a nurse at that time). I was fortunate not to have much nausea and vomiting during my chemo — plenty of other problems, but not that. She was there for the only time I recall vomiting while in the hospital. (Hey, no one ever said it would all be glamorous.)

After those times, and through the outpatient chemotherapy, Susie was there, supportive. She also gave me the best Christmas gift I ever got, while hospitalized at Stanford with that initial treatment December 2001, when I was just about to embark on the difficult part of the treatment and recovery. It was a battery powered electric candle. On the card on it, she wrote, “To remind you there’s a light at the end of the tunnel.”

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Thanks for providing that light in all you do, Susie.

History #6 – Diagnosis – December 22, 2001 – Stanford – Biopsy

January 30, 2007 at 5:18 am | Posted in Diagnosis and treatment history, Initial diagnosis of APML, Stanford Hospital, Susie Engard | 1 Comment

 

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…..

 

 

Why I run #2 — How I got into this, part 2 — It’s all Rene’s fault

January 27, 2007 at 10:14 pm | Posted in AIG, My current training, Reasons why I run, Rene McGillicuddy | Leave a comment

More on the history of how I talked myself, or rather, let myself be talked, into running a marathon….

After finishing treatment in the summer of 2001, I was still on low dose chemotherapy and was still tired, roughly at about 75% of normal. I began volunteering for a Team in Training program, but as an honored patient, not as a participant.

I’ve thought of running a marathon with TNT for several seasons in the past couple of years as I got back to 100% health. I had really considered, told a few people, made a few plans. But I never could do it. I never thought I could finish it, with my travel commitments for work (I still have the same position, now as a manager, but with similar travel). Plus, I never thought I could finish mentally. What was holding me back was more a bit of confidence that I could complete it. Now, I have seen people of all shapes, sizes and abilities train over the years in TNT programs, and almost all finished their marathon. But that was others, not me. Yet another irony — some people when they go through a terrible life-threatening disease have a new appreciation for life, and attempt all sorts of things they never attempted before. For me, though, it didn’t work out that way.

I have other posts which go into detail about the reasons why I’m doing a marathon, from the perspective of the 5th year anniversary, the people I admire, and the need to raise funds. But from a purely athletic perspective, the reason I know I can do this now is a co-worker at AIG, Rene McGillicuddy.

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Rene is another consultant from another division in AIG who I’ve known for years. She also has faced a similar health challenge that she’s overcome. After, she began running triathlons, having completed a few sprint distance triathlons. We were talking about her athletic experiences, and I mentioned my desire to eventually train and finish a marathon. She immediately told me I could, and encouraged me. Not just verbal — she has begun running with me after work, pushing me to run farther. Our runs on Marina Green towards the Golden Gate Bridge on afternoons are a great treat.

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Since we began running last fall, I have gone from just being able to run a few minutes without stopping, to, as of last Saturday, January 20, I ran five miles. I have never run five miles in my life, but it seemed easy, the right thing to do. In a casual conversation recently Rene, without thinking about it, said “Gregg, you’re pretty athletic, and ….” I don’t recall the remainder of the sentence or the point. But I was honored to think someone would consider me something of an “athlete.” But that’s what you call someone who runs five miles, right?

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I have thoroughly enjoyed running with Rene, and now feel fantastic when I run, just incredible. I now know that finishing a marathon is quite doable, and it will be done, even if at my own slow pace. There will be lots of people who will help me finish the marathon, but I can say that it was Rene who first got me to really understand I can run, and got me to understand the fantastic way you feel when you run.

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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.

People who’ve supported me #2 — Emily (and Claudia)

January 27, 2007 at 10:13 am | Posted in AIG, Emily Rhinehart, Those who supported me during my recovery | Leave a comment

Time to introduce and honor someone else who made a big difference in my treatment and recovery.

Emily Rhinehart has been my manager for the last six years, and was at the time of my diagnosis. As you may have read here, she was one of the first persons I shared my symptoms and what I had been thinking was happening (some kind of blood disease, I thought) before the first diagnosis. She was also the first person after Sam I talked to about my diagnosis. She was also the first person whom I broke down and cried while talking to when first diagnosed, and probably the only person other than Sam that I cried in front of during this whole experience.

Emily has been a delight from the beginning to work with. She’s smart, inquisitive, and entertaining to talk to. And to her credit, she’s always told me what a good job I do [wink], and has been very supportive. But more than any of that, her just being there that first night, and helping me through that first moment of weakness, was a moment I’ll never be able to forget.

Emily also played a big communication role throughout my recovery. In the six months I was on disability leave from work, she kept in contact with Sam and me, and kept everyone in AIG — both the consultants nationwide and the healthcare underwriting group in San Francisco — updated.

There were a LOT of people in AIG who made a difference, and I’ll post about them later. But for now, I have to thank Emily individually for helping me through that first night.

In the pic below, Emily is the woman with the shocking white hair. The other person with her is Claudia. Claudia was the consultant who was hired while I was recuperating, and became both a peer and a good friend. The picture was taken at the end of the Bay to Breakers in 2003. We walked together, NO running.

Claudia and Emily, Bay to Breakers, 2004

History #4 – diagnosis – December 21 – The day of diagnosis, part 1 — “You have leukemia”

January 27, 2007 at 10:10 am | Posted in AIG, Diagnosis and treatment history, Emily Rhinehart, Initial diagnosis of APML, Sam Cantin, Stanford Hospital, symptoms of APML | Leave a comment

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.

History #3 – diagnosis – December 19, 2001 — bleeding gums

January 27, 2007 at 10:01 am | Posted in AIG, Diagnosis and treatment history, Initial diagnosis of APML, symptoms of APML | 1 Comment

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:

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History #2 – diagnosis – mid-December 2001 – symptoms in Louisiana

January 27, 2007 at 9:58 am | Posted in AIG, Diagnosis and treatment history, Emily Rhinehart, Initial diagnosis of APML, symptoms of APML, Those who supported me during my recovery | Leave a comment

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.

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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.

Why I run #1 – mental – what does it all mean?

January 27, 2007 at 9:39 am | Posted in honoree, Reasons why I run, TNT | Leave a comment

Another set of posts will cover why I am running and fundraising for a marathon.

The short answer is the “C” word — cure, and celebration of the 5th year of being disease free. The stories of what I went through five years ago are being documented. See the tab “About this blog” and “About APML” tabs at the header for more detail, if you haven’t already.

But it runs even deeper than that. There are people who I’ll introduce you to, fellow honorees for TNT, who face much more than I have, and I had a lot. There are others some of you may not have met, but who have been lost to blood cancers, and other types of cancers, who I run in honor of.

But the first reason I want to mention is this: I have no idea why any of this happened to me. Why do things happen to a person? Is there a reason for the things we go through? I used to wonder why I got this and what it meant. I also wondered why my prognosis was so good, why my treatment wasn’t as difficult as others have gone through, and why I survived where others didn’t.

I spent the first few years after my survival wondering these questions, and feeling like I never got the reason, the life-changing “I’m going to climb Mt. Kilimanjaro” drive that pushes other survivors to understand their diseases and enjoy life more.

But in the last year or so, as I’ve spoken to TNT participants and prospective participants at various functions telling my story, I’ve come to realize something. My story, my survival, is representative of the hope that leukemia research — the kind of research that Team in Training fundraising programs go to fund — can save lives. That research saved my life, and allowed me to be treated in ways that don’t require severe treatment regimens. I now realize that I have a great story, and a great gift in the ability to speak well, and the ability to tell my story of how TNT participation and fundraising saves lives like mine to great effect.

So I am running now, to complete the circle. I have gone from not understanding, to understanding how research into treatments saved my life, and the power of fundraising for research to save other lives. Now, I want to do my part to raise funds as well. I’ll always tell my story to help others understand how raising funds for leukemia research saves lives like mine. Now, I want to start raising funds of my own, and get the benefits you gets when you train and complete the endurance event.

And I also realize another benefit –I have moved participants and trainees in the TNT program, but as an observer, an outsider. As a fellow participant it will be even more of an impact. So this marathon is to help others be able to be cured and celebrate, while celebrating my own cure.

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