Most people probably wouldn’t consider the anniversary of a cancer diagnosis to be a celebratory matter, but I personally celebrate the other 364, so I figure what the hell. I try not to make a big deal out of it, but it’s hard to think of the
significance of December 1st each time the day rolls around....especially this year. And for a couple of reasons.
Last week I had the chance to visit with a girl friend from high school who was very close to me when I was diagnosed. To be honest, since my "recovery" eight years ago, I haven't talked about my sickest, darkest times with...well...anyone. So, as we chatted about the details of my diagnosis and the weeks that followed, I heard, for the first time, what many of the people around me were feeling, thinking, and talking about when I was sick.
I certainly knew how severe my situation was and how dark it got, but I didn't know if anyone else knew of its severity. I never knew what it looked like from the outside...mainly because I’d not asked. After I initially started feeling better, none of us ever really looked back.
“You were so sick…none of us knew what to do. I remember one day you were so weak you couldn’t even stand up.”
I had totally forgotten about that. It was true – there were many instances when I was so weak, and in so much pain, I couldn’t get out of bed. On multiple occasions I was too weak to stand in the shower, so I’d sit, cross-legged and just stare at the wall. Provoked by our conversation, I started getting flashbacks.
These newly recovered memories brought back a flood of emotions and sparked a sense of curiosity. “Did you think I was going to die?” I asked, genuinely intrigued, and slightly nervous to hear the answer. “We weren’t sure…but it is something we thought and talked about…you were just so sick, and we didn’t know what to think...”
That’ll put things into perspective pretty quick.
I think hearing that was scarier than living through it at the time. It makes it so real again. I knew that my family and I were aware of the gravity of the situation, but I’d never really heard about how it looked from the outside. To hear that your 16-year-old girlfriends thought they might have to watch their good friend die, is though to hear.
With that said, I know some people didn’t understand the seriousness of the situation, and that’s okay too. The people who were close to me knew, and that’s what matters. They could see and feel the pain I was in.
The memory of the emotions I felt when I was sick have slowly faded over time. While telling my story for different charities, and support causes, etc., I’ve mentioned the pain and the hurt I felt, but in sharing it so many times over the past eight years, the severity of it has lost much of it’s realness. During the conversation with my good friend last week, the memory of those emotions came back to me in an all too real way. I could remember the pain so clearly again and feel the desperation in my heart.
I look back at all the things I’ve done over the past year, not to mention, the past eight years, and it’s incredibly humbling to think of how close I was to not having those opportunities. Don’t get me wrong, I had accomplished plenty and had lived a wonderful life by the time I was 16, but it would have been a shame to get cut off that soon. I had, and still have, more work to do.
As I shared in previous posts, one year ago my cancerous cell counts, which had been controlled at a VERY low level for 7 years, began to creep up and grow at an alarming rate. My doctors assumed the cancer had become resistant to the medication I was on, which is typical within 2-10 years, and I’d have to make a change in medication. Unfortunately, the two other realistic treatment options I have are even newer than Gleevec, still relatively experimental, and are very dangerous. One has an alarmingly high risk of heart attack, and the other an alarmingly high risk of stroke. Both not good.
I’m worried,” my doctor said to me last November, “you’re an athlete. I’m not sure how we’re going to manage these risks.” I was told I was going to need to change my lifestyle; wakeboarding would have had to stop and my physical activity would have to have been dramatically decreased. Less strenuous activities were all I would be able to do. Needless to say, I was pretty bummed.
On Gleevec, I deal with a number of side effects every day: fatigue, bone pain, nausea, swelling, sun sensitivity, etc. I’ve always said this is a small price to pay to live. And it is. But everything is relative, so eventually you still manage to take things for granted. When threatened with not being able to live the way you want to live, not being able to do the things you love, and also have the constant thought of heart attack and stroke in the back of your mind (not to mention the actual risk), among a plethora of other side affects, you realize that you’d do anything for puffy eyes and swollen legs. I can live with fatigue, nausea, and bone pain. Just leave my heart alone.
For the following months I saw multiple specialists and spoke with dozens of people in search of different opinions. It was essentially the lesser of two evils that would be the drug of choice. In addition to the actual risk itself, it’s quality of life that’s hardest to deal with. Not being able to do the activities I love would have been hard, not to mention having the thought of heart attack and stroke weighing constantly on my mind – it’s just not a pleasant way to live.
I made a decision to switch oncologists and convinced him to let me stay on Gleevec for just a little while longer. I needed to buy some time to clear my head. And I wanted to know for absolutely sure that the Gleevec was no longer working. For the first time in my life, I felt a little desperate. At that time, I made a decision to eliminate all negative energy from my life and focus on myself. Really focus on myself. In fact, my 2014 New Year’s resolution was to be more selfish. It sounds worse than it is, but I really needed to make my mental and physical health a priority. (This goes without saying: I planned to be more selfish but, of course, without hurting others or negatively affecting anyone else in any way.)
Standing in the Nashville airport on July 1st, just before boarding a plane bound for Minnesota for the Fourth of July, I got a call from my oncologist. The tone in his voice said it all. “Not sure how you did it,” he said. “Your counts turned around. Looks like you’re staying on Gleevec for at least a little while longer.” The drug was working again.
I was so emotional and ecstatic that I could hardly tell my family. When I get overwhelmed, I tend to keep to myself. I’d received such an outpouring of support from family, friends, and my community six months earlier when the cancer had returned, I felt it would be selfish to make a huge announcement and draw any more attention or energy from anyone who had already given me so much. I felt selfish making a big deal out of it again.
Though the Gleevec is "doing it's job" for now, my cancer counts are still not as low as they could be on the new drugs and not as low as the doctors would like. However, we feel that, so long as the counts are controlled, living with this level of Leukemia is a safer option for someone of my age and activity level, than risking the life threatening heart risks the other two drugs pose. Back to kickin' the can down the road!
Looks like you guys are stuck with me for a while.
I work very hard and play very hard. I love pushing limits, and sometimes I push them a little too hard on either (or both) end of the spectrum. I’m the first to admit that I need to be put in my place every once in a while, and this year I really needed it. December 1st is a wonderful reminder every year that I am not invincible…pretty darn close, but not invincible.
This year's Cancerversary celebration didn’t include balloons or streamers, cake or champagne. I had bigger fish to fry like: negotiate real estate deals, get my oil changed, and do laundry. But I still dedicated my day, as I do every day, to celebrating family, friends, doctors, and the people who cared about me and continue to offer their support.
Yeah, being diagnosed with and living with Leukemia may not necessarily merit celebration for some, but I’ve got it pretty darn good, and let’s be honest, when’s the last time I passed up an opportunity to celebrate? So, if you'd like, please take a moment this weekend, or any day, to celebrate with me. The celebration is just as much for you as it is for me.
Stay kool,
a.score
Last week I had the chance to visit with a girl friend from high school who was very close to me when I was diagnosed. To be honest, since my "recovery" eight years ago, I haven't talked about my sickest, darkest times with...well...anyone. So, as we chatted about the details of my diagnosis and the weeks that followed, I heard, for the first time, what many of the people around me were feeling, thinking, and talking about when I was sick.
I certainly knew how severe my situation was and how dark it got, but I didn't know if anyone else knew of its severity. I never knew what it looked like from the outside...mainly because I’d not asked. After I initially started feeling better, none of us ever really looked back.
“You were so sick…none of us knew what to do. I remember one day you were so weak you couldn’t even stand up.”
I had totally forgotten about that. It was true – there were many instances when I was so weak, and in so much pain, I couldn’t get out of bed. On multiple occasions I was too weak to stand in the shower, so I’d sit, cross-legged and just stare at the wall. Provoked by our conversation, I started getting flashbacks.
These newly recovered memories brought back a flood of emotions and sparked a sense of curiosity. “Did you think I was going to die?” I asked, genuinely intrigued, and slightly nervous to hear the answer. “We weren’t sure…but it is something we thought and talked about…you were just so sick, and we didn’t know what to think...”
That’ll put things into perspective pretty quick.
I think hearing that was scarier than living through it at the time. It makes it so real again. I knew that my family and I were aware of the gravity of the situation, but I’d never really heard about how it looked from the outside. To hear that your 16-year-old girlfriends thought they might have to watch their good friend die, is though to hear.
With that said, I know some people didn’t understand the seriousness of the situation, and that’s okay too. The people who were close to me knew, and that’s what matters. They could see and feel the pain I was in.
The memory of the emotions I felt when I was sick have slowly faded over time. While telling my story for different charities, and support causes, etc., I’ve mentioned the pain and the hurt I felt, but in sharing it so many times over the past eight years, the severity of it has lost much of it’s realness. During the conversation with my good friend last week, the memory of those emotions came back to me in an all too real way. I could remember the pain so clearly again and feel the desperation in my heart.
I look back at all the things I’ve done over the past year, not to mention, the past eight years, and it’s incredibly humbling to think of how close I was to not having those opportunities. Don’t get me wrong, I had accomplished plenty and had lived a wonderful life by the time I was 16, but it would have been a shame to get cut off that soon. I had, and still have, more work to do.
As I shared in previous posts, one year ago my cancerous cell counts, which had been controlled at a VERY low level for 7 years, began to creep up and grow at an alarming rate. My doctors assumed the cancer had become resistant to the medication I was on, which is typical within 2-10 years, and I’d have to make a change in medication. Unfortunately, the two other realistic treatment options I have are even newer than Gleevec, still relatively experimental, and are very dangerous. One has an alarmingly high risk of heart attack, and the other an alarmingly high risk of stroke. Both not good.
I’m worried,” my doctor said to me last November, “you’re an athlete. I’m not sure how we’re going to manage these risks.” I was told I was going to need to change my lifestyle; wakeboarding would have had to stop and my physical activity would have to have been dramatically decreased. Less strenuous activities were all I would be able to do. Needless to say, I was pretty bummed.
On Gleevec, I deal with a number of side effects every day: fatigue, bone pain, nausea, swelling, sun sensitivity, etc. I’ve always said this is a small price to pay to live. And it is. But everything is relative, so eventually you still manage to take things for granted. When threatened with not being able to live the way you want to live, not being able to do the things you love, and also have the constant thought of heart attack and stroke in the back of your mind (not to mention the actual risk), among a plethora of other side affects, you realize that you’d do anything for puffy eyes and swollen legs. I can live with fatigue, nausea, and bone pain. Just leave my heart alone.
For the following months I saw multiple specialists and spoke with dozens of people in search of different opinions. It was essentially the lesser of two evils that would be the drug of choice. In addition to the actual risk itself, it’s quality of life that’s hardest to deal with. Not being able to do the activities I love would have been hard, not to mention having the thought of heart attack and stroke weighing constantly on my mind – it’s just not a pleasant way to live.
I made a decision to switch oncologists and convinced him to let me stay on Gleevec for just a little while longer. I needed to buy some time to clear my head. And I wanted to know for absolutely sure that the Gleevec was no longer working. For the first time in my life, I felt a little desperate. At that time, I made a decision to eliminate all negative energy from my life and focus on myself. Really focus on myself. In fact, my 2014 New Year’s resolution was to be more selfish. It sounds worse than it is, but I really needed to make my mental and physical health a priority. (This goes without saying: I planned to be more selfish but, of course, without hurting others or negatively affecting anyone else in any way.)
Standing in the Nashville airport on July 1st, just before boarding a plane bound for Minnesota for the Fourth of July, I got a call from my oncologist. The tone in his voice said it all. “Not sure how you did it,” he said. “Your counts turned around. Looks like you’re staying on Gleevec for at least a little while longer.” The drug was working again.
I was so emotional and ecstatic that I could hardly tell my family. When I get overwhelmed, I tend to keep to myself. I’d received such an outpouring of support from family, friends, and my community six months earlier when the cancer had returned, I felt it would be selfish to make a huge announcement and draw any more attention or energy from anyone who had already given me so much. I felt selfish making a big deal out of it again.
Though the Gleevec is "doing it's job" for now, my cancer counts are still not as low as they could be on the new drugs and not as low as the doctors would like. However, we feel that, so long as the counts are controlled, living with this level of Leukemia is a safer option for someone of my age and activity level, than risking the life threatening heart risks the other two drugs pose. Back to kickin' the can down the road!
Looks like you guys are stuck with me for a while.
I work very hard and play very hard. I love pushing limits, and sometimes I push them a little too hard on either (or both) end of the spectrum. I’m the first to admit that I need to be put in my place every once in a while, and this year I really needed it. December 1st is a wonderful reminder every year that I am not invincible…pretty darn close, but not invincible.
This year's Cancerversary celebration didn’t include balloons or streamers, cake or champagne. I had bigger fish to fry like: negotiate real estate deals, get my oil changed, and do laundry. But I still dedicated my day, as I do every day, to celebrating family, friends, doctors, and the people who cared about me and continue to offer their support.
Yeah, being diagnosed with and living with Leukemia may not necessarily merit celebration for some, but I’ve got it pretty darn good, and let’s be honest, when’s the last time I passed up an opportunity to celebrate? So, if you'd like, please take a moment this weekend, or any day, to celebrate with me. The celebration is just as much for you as it is for me.
Stay kool,
a.score