One week ago today, so Thursday December 20th, 2012, I had another port flush scheduled. While doing that, my nurse took a blood sample to test. Good. I was really hoping she would. I have been really tired lately and had raised my proverbial eyebrow.
A little backstory on why I worry about blood levels. You would think it normal for a cancer patient either in treatment or recovery or even remission to worry about their blood counts, but this goes a little beyond "normal." My last heavy round of chemo ended mid March, which made for almost exactly two years since I started this mess. I was happy to hear the test results then, "shows no sign of the disease." I had been training for my second half marathon in June and was looking forward to having a couple months to get the chemo and fatigue more out of my system. I did not push myself that race. I took it really slow, just relaxed, and enjoyed myself, not wanting to try and push hard because of the recent round of treatment.
Two and a half months after that race, I ran the Hood to Coast relay for the first time. In training for it, I had been following a generic schedule set up by an OHSU group. OHSU is one of the biggest medical universities and hospitals on the West Coast. On my last long run before I switched entirely to shorter runs multiple times during the day (which is like the relay), the schedule said something like 11 or 12 miles. If I am going to run that, I might as well run the 13.1 to make a half. Right? Very wrong. It was, unequivocally, the worst run I have ever had. By mile 11-ish, I thought I was going to black out. Not like, "Oh man this is hard! Why am I doing this?" but I was actually blacking out. My sight was blurring and spotty. If I tipped over like to rest my hands on my knees, I would have fallen over completely. Black out. I was not sure I could make it home. I stopped running. I walked the last couple miles home and was just happy to make it.
The next few days were very telling. I could not recover. I felt like I was in the midst of heavy fatigue again, and sever chemo brain. It was worrying me. I finally called my oncologist who had me come in the same day for a blood test. Surprisingly, the white blood cells were fine (for me) but I was two liters low on red blood. They just about ran me over to the hospital right then. Instead, they scheduled an infusion for the next day. We started running all kinds of tests to try to determine the cause of the red cell depletion. There are a few common causes, but none of them seemed to be the catalyst for me. Actually that's a good thing. Some of the common things were like the cancer spread to the bone marrow, or the blood produced by the marrow had mutated and the body was rejecting it. While getting a bone marrow sample done is less than pleasant, it is a necessity.
With the blood doping, I was given permission to still run H2C the next week. Mandy was not thrilled. But I did really well. Blood doping totally works. :)
It's been four months or so since then. Every time I have been tested, my blood has been holding, which is great. Seems it was a weird fluke, for the most part. But anytime I cannot shake being really tired, I get worried now. Recently, I cut out energy drinks. No more Rockstar, no more Amp. Let's be realistic though, there is still a lot of Diet Coke. One step at a time. But the last while I have been super tired and I have blamed it on the lack of Rockstar. But the results of the blood test show both red and white cells (and related things like neutrophils, etc.) were down again. They were lower than one month ago though higher than the two months prior. So the results were not bad enough to warrant additional tests, but still pay attention and do another CBC next month.
My worry comes in here. I have three more weeks before I go in, and on Christmas day I took a two and a half ish hour nap and still went to bed by 9:00pm. I slept for nine hours and was unhappy the alarm was going off. I could have slept more. Last night, Dec 26th, doing one of the shorter Insanity workouts I noticed I was pretty spacey. I am not liking the direction this may be heading. My running is stronger now than it has ever been. Not trying to push time, I did 10 miles and averaged 10 min 19 sec per mile. That is so much faster than I have been able to run that I am very excited to start working on speed. But the Spidey Sense is tingling about the tired. With three weeks before the next blood test, and maintenance dose of chemo, I guess I just keep an eye on it. Keep running. Keep doing Insanity.
...Wait and see.
And in the words of a Spaniard, "I hate waiting."
Thursday, December 27, 2012
Monday, December 17, 2012
Blood Doping and Ogden Nash
This was an email to my siblings, August 10th, 2012:
i figure Mom/Dad have let you know the basics from your "eat steak" comment [Stephanie].
the run down is this. i am either not producing blood like a normal person or i am hemorrhaging like a vampire's dream. 3 weeks ago i had my last maintenance dose and blood levels all looked really good [for me anyway]. but i have been so tired and feeling fatigued, which is different than tired, and really dizzy weird. so i called oncology and they had me come in for blood tests. in the last 3 weeks, i have averaged losing a pint a week. not good.
a blood cells life span is 2 or 3 months. your body produces as much as dies off to keep your blood levels fairly even. so like i said, either i stopped producing, or i am bleeding out like crazy. now since i have not had any blood spills like a crude oil company, the blood could be deteriorating at a rate much faster than the production can keep up with. [bad grammar, i know] but that is less likely.
so the immediate fix is get a transfusion to top me off, then check what might be the cause of the problem. yesterday i went into the hospital to have them do a blood draw so they can match it with a donor. since the transfusion part takes 5+ hours and the matching process 2-3 hours, they like to split them up to different days. my part was pretty quick. give them a sample, answer a few questions then be on my merry way while they get to work.
i could do the transfusion today, but the hospital was already pushing maximum capacity for today and i need to work, so i go in tomorrow to get blood. i will practically be a Tour de France rider after my blood doping experiment. [:)] i told them to give me something with super powers. i don't think it's going to work though. i should feel a lot better after the transfusion. energy levels up, oxygenation and everything good... i will try a mellow stationary bike ride tomorrow evening to see how i am doing.
then Monday, "...So good to me, Monday morning, It was all I hoped it would be," i start tests again. i will have a CT followed by a bone marrow sample. that is no bueno. i have only had one done before, when i was first diagnosed. it messes you up for the rest of the day and i still have a bb sized lump in my butt from it. results will follow in the few days after those tests. the worry is that lymphoma has spread to the marrow and is causing the lack of production. which would mean harder heavier treatment than i have previously had. ...merde! to borrow a good frenchy word.
oh well. we don't know what is up and the rest is speculation. and Ogden Nash says "God in his wisdom made the fly, And then forgot to tell us why."
-R
i figure Mom/Dad have let you know the basics from your "eat steak" comment [Stephanie].
the run down is this. i am either not producing blood like a normal person or i am hemorrhaging like a vampire's dream. 3 weeks ago i had my last maintenance dose and blood levels all looked really good [for me anyway]. but i have been so tired and feeling fatigued, which is different than tired, and really dizzy weird. so i called oncology and they had me come in for blood tests. in the last 3 weeks, i have averaged losing a pint a week. not good.
a blood cells life span is 2 or 3 months. your body produces as much as dies off to keep your blood levels fairly even. so like i said, either i stopped producing, or i am bleeding out like crazy. now since i have not had any blood spills like a crude oil company, the blood could be deteriorating at a rate much faster than the production can keep up with. [bad grammar, i know] but that is less likely.
so the immediate fix is get a transfusion to top me off, then check what might be the cause of the problem. yesterday i went into the hospital to have them do a blood draw so they can match it with a donor. since the transfusion part takes 5+ hours and the matching process 2-3 hours, they like to split them up to different days. my part was pretty quick. give them a sample, answer a few questions then be on my merry way while they get to work.
i could do the transfusion today, but the hospital was already pushing maximum capacity for today and i need to work, so i go in tomorrow to get blood. i will practically be a Tour de France rider after my blood doping experiment. [:)] i told them to give me something with super powers. i don't think it's going to work though. i should feel a lot better after the transfusion. energy levels up, oxygenation and everything good... i will try a mellow stationary bike ride tomorrow evening to see how i am doing.
then Monday, "...So good to me, Monday morning, It was all I hoped it would be," i start tests again. i will have a CT followed by a bone marrow sample. that is no bueno. i have only had one done before, when i was first diagnosed. it messes you up for the rest of the day and i still have a bb sized lump in my butt from it. results will follow in the few days after those tests. the worry is that lymphoma has spread to the marrow and is causing the lack of production. which would mean harder heavier treatment than i have previously had. ...merde! to borrow a good frenchy word.
oh well. we don't know what is up and the rest is speculation. and Ogden Nash says "God in his wisdom made the fly, And then forgot to tell us why."
-R
My American Life
I listen to a podcast called This American Life, with Ira Glass. One particular episode was a collection of favorite stories by long time contributor David Rakoff, who is Canadian, by the way. David recently passed away from cancer. I do not mean to imply that there was some sort of departure from cancer as my grammar and sentence structure might indicate. We all wish it were that easy. No, Mr. Rakoff was killed by his cancer. A post radiation sarcoma. As if my own history with cancer was not enough to put me on edge as I listened, which it did, but he really cut me to the quick, as it were.
I find now, after two years of chemo and enough scares and bone marrow samples since, anytime someone mentions cancer as an anecdotal story it sets me on edge. The hair on the back of my neck stands up. Like there are trigger words that might awaken the sleeping beast within me. My own Balrog or Lou Forigno, for the real geeks. With almost baited breathe I listened to David speak, Ira narrate, and I was glad I had hair on my neck again to be able to stand.
While they did not awaken the creatures of the deep, David said something I could not shake. It spurned me to write this. A reflection of my thoughts, of my emotions, woes and fears. The latter of which still seeks me out, …and in the darkness binds me. Ok, that should be the last LOTR reference. Maybe. Anyway, David said he regarded his cancer as if it never happened. I do the same.
Perhaps that is normal. Perhaps that is how we as humans try to cope with emotions and situations we feel are too great for us to handle. Denial of our various realities seems pretty normal to me. Though I do not know that such action is healthy, nor do I know how to act any other way. I like to ignore cancer as much as possible. I like to make jokes about it. While bald during my last round of chemo, I started introducing myself as Lex Luthor. I even found a picture of Gene Hackman in the role to use as my avatar on one of my social media sites. I am pretty sure I chose laughter in the face of calamity in hopes of fooling myself more than others. But you can never completely shake the underpinnings of terror.
Because of Mr. Rakoff, I feel I need to address this. Not for anyone else, but for myself. This is your pain. This is your burning hand. It's right here. Look at it. What? That's not LOTR.
It has been almost six months since I was told my CT results showed no signs of cancer. Since then I have run two half marathons, Hood To Coast, a 5k obstacle race, had a few "maintenance" doses of light weight chemo, a blood transfusion, bone marrow sample, and more anxieties than I care to admit. My cancer, Non Hodgkin's Lymphoma, is one that will come back. There is no known cure, and no guaranteed timeline.
One of my favorite movie quotes come from the Shawshank Redemption. Morgan Freeman's character Red said, "Get busy livin', or get busy dyin'." I have tried to apply the principle of this to much of my life. It is not a new concept either. Shakespeare through Hamlet asked if it was better to "suffer the slings and arrows of outrageous fortune, or to take arms against the sea of troubles, and by opposing end them". It's not much different. Do we act or let ourselves be acted upon? I chose to get busy livin'.
Maybe that is why I act loud and crack silly jokes at inappropriate times. Maybe it's because I choose to not wallow in the despair of my mortality. Maybe that is how I feel I am living. Do not misunderstand me. I acknowledge the need for every person to have their moments, when they are unavoidably overwhelmed by tidal waves of emotion. That is part of our human condition. Though for too many I see that as the reality in which they choose to dwell. Why? I cannot say. What does that serve? I do not know.
In light of such cancerous lives, the potential finality of it all rearing its ugly mottled snout, perhaps I have found some clarity in it all. With fatality looming over my head, I feel we should use it as the reminder to be passionate about our lives. What do we love? What is fantastic to us? What moves us? What carries us through those long days in our proverbial treatment rooms.
My poor mother started her first round of treatment, the same time I was getting my last dose of chemo. It may have been on the same day even. She has since finished a very difficult five months and was just told the results of her CT show cancerous cells still in her system. She will meet with the next oncologist and begin a heavy regiment of radiation treatment. This was the news I got today while beginning my day at work.
...SHIT!!
How am I supposed to get over that, compartmentalize and get on with my day? I find myself teetering between an uncontrollable outburst of tears, and aching to go all Tyler Durden on someone. Needless to say, I am not so well balanced or passive as I was a week ago.
When my mother was diagnosed, I was closing in on two years of treatment. One day, my father called me to tell me something she said. She had always told herself that if she got cancer or something horrible, she would not fight it. She would just roll over and die. But seeing all that I have gone through in the last few years, she had changed her mind, was willing to get chemo and fight.
That shook me up. That I could have had such an impact on another. While this was not the first I had impacted others, never had it been to this magnitude. At least not in my eyes. I will get to that in a minute. But while emailing back and forth today, my mother asked, "Ryan, why do some of us have to fight so hard to stay alive?" I responded with this picture. This is Mandy [my wife] and Lucy [our daughter] this summer at the beach for the 4th of July, 2012. Lucy had just turned two the month before.
I told my mother, "This is why. Other wise it would not matter."
Ok, now I think a little back story is necessary. I was diagnosed when I was 34. It was April 26th, 2010, a Monday. Non Hodgkins Lymphoma. I began the first round of treatment shortly after that. My wife was not with me on the day I was told about my cancer. She was on bedrest with Lucy. It is something she still feels great sorrow for missing. Really, that does not bother me in any way. I told her not to worry about it. That it was probably nothing and I was going to work after my doctor appointment anyway.
Lucy was born premature and spent weeks in the NICU. I was going to school and finishing finals while working and getting treatment. I would stop at the hospital on my way home for the day so I could see Lucy and hold her until I could not stay awake anymore, head home to start all over again the next day. The NICU nurses were nice to me. They offered to give me a delivery room across the hall for me to sleep in.
I finished finals, finished treatment, and checked in for surgery the same day they released Lucy. When it rains it pours. The surgery was completely unrelated to the cancer but I had put it off until after I finished the first round of chemo. Not wanting to get into that part of the medical mystery of me, I mention it only because it was another thing to deal with. It took a few months for me to be able to walk well after that surgery. That fall, I think in November, I attended my first Team In Training meeting.
Team In Training, TEAM or TNT, is the fundraising arm of the Leukemia and Lymphoma Society. They do endurance events like marathons, half marathons, triathlons, etc. to raise money for cancer. This meeting was an informational recruiting meeting. It was in a pub and there was a good amount of people there. They had one of the staff people talk a little about the nuts and bolts of TNT. They had a participant and cancer survivor talk about the impact of TNT. I knew we did not have the money to sign up, but after the meeting, I called my wife and choked out "I have to do this." Without hesitation, she said ok. So I signed up having never liked distance running, having never even run a 5K, and not knowing if my doctors would let me.
My oncologist conditionally gave approval for my running a half marathon, 13.1 miles, only if I was willing to walk when needed. I promised. He would not approve a full marathon. During training for that half, I was going through another round of treatment. I had my long day on Thursdays (5+ hours), then a short day on Friday, then we had our group run on Saturdays. The Saturday group runs are where we pushed ourselves farther each time. We met as a group, went over any announcements, did a team cheer, then got to running. As is to be expected, especially with a group specifically dedicated to raising funds for cancer, people ask. "How did you get involved..." "Why are you running..." etc. I hated that.
I hated that I didn't have a good answer without betraying all that I wanted left in the shadows. I hated sharing that I had cancer. Like I had done something to warrant getting cancer and that nobody would understand me. That people would ...I don't know. Revile me? Treat me as contagious? Treat me like a cancerous growth. It was one of the few times in my life where my ego was not the loudest voice. I knew then, I was not immortal. This could kill me.
I was ashamed of my cancer.
I wanted to withdraw from life. Not die, just not see anyone. If I felt there was anything more to the casual greeting "How you doin'?" I wanted to punch them. I wanted to scream obscenities to anyone whose gaze fell a little too long on me, to emotional passers bye, to the heavens. I would rather have been able to get in a fight, feeling the immediate physical pain, inflicting pain on those whom I fought, and not this emotional torment and unseen agressor. This was hell. This left monsters hidden in the shadows of my soul. And I didn't know what to do with that.
When people asked why I was doing TEAM, I hope I just looked socially awkward and said something like a close family member was battling Lymphoma. If any of that other stuff came out, I apologize to any undeserving recipient.
As we began our training in January, there were days when I knew I could not run. It was too cold outside for someone with such a compromised immune system such as I had. I would still go and try to be there to cheer on my teammates. To be honest, I was there as much for my support as my teammates. Being there helped me feel better. It helped me feel like I could make it through treatment. It was empowering when I just wanted to quit.
There was only one day I started that I could not finish. It was a Saturday directly after two consecutive days of chemo. I had done a little over three miles, and thought I was going to black out. Coach Karl and Coach Jen ran with me that day. We got to the water station that was set up, and I quit. I got a ride back with the person that was manning that station after everyone had gone through. It was rough.
I had no idea the impact that I was having on my teammates. I actually did not know until my race weekend. I had finished that round of chemo by about a month, and literally one week before the race I was hospitalized with pneumonia. I hesitated to ask my oncologist, almost pleading, "Can I still run?" He consented saying it would not hurt my lymphoma, but I would be tired. Remember to walk when I needed.
Seattle Rock N Roll Marathon 2011.
One of my teammates had her maternal instincts kick in. Rene refused to leave my side the whole race because she was too worried about me. When I began the season, I thought with my former rugby player ego, "Shoot! I can run a full marathon. Cancer won't stop me." By the time I got to the starting line, I just wanted to cross the finish line on my own feet, without dying. I was glad to have Rene run with me. It was comforting. I don't remember exactly where along the course, but about mile 7 or 8, I happened to look down at the back of Rene's race shirt. As is the same for many charity groups, there is a place on the back of all TEAM shirts to write in the names of those for whom you run, those that keep you going, those you remember. Well I saw my name there. My name on her shirt. Surely that must have been someone else. So I asked. "Is that, is that MY name?" Yes. Maybe my emotions are extra close to the surface today, but I am still getting choked up over that. That I could have such an impact on another in a positive way. It is a powerful thing. I found out that several of my teammates that weekend had done the same. I had no idea.
Thank you Rene. Thank you Christine.
Another teammate told me after the race, that early in our training on one of those days when I could not run because of the cold weather, as he came around the last corner I yelled out to him, cheering him on. He said he knew at that moment, he would finish that race because of me.
That weekend changed my life. I knew I could not repay to my teammates what they had done for me. I knew I would always be a part of Team In Training.
A few months ago, when my father told me of my mother's decision to undergo treatment because of the struggles she had seen me endure, I had another of those moments. When my wife asked me if I thought our daughter Lucy had helped me get through my struggles with cancer, I knew before she asked. Yes. We have four children, and I love each of them immensely, but there is no question the grand design of the universe had that one timed out for a reason.
I do not like to dwell on my cancer. Not publicly anyway. Not socially. Cancer is a downer. I try to make people laugh. I like to help people feel empowered. I go to art school because I like to make cool stuff. To others it may seem I, like David Rakoff, pretend my cancer does not exist. Good. I try. Maybe I do because others may think their problems are more manageable if they see me doing well. Maybe it's just because I do not like to acknowledge my mortality. I don't know why.
Whatever my reasons, there are times when I cannot keep from sliding into despair. It happens to everyone. It is for those that need the help to get up and keep going that I try to do all that I can.
"Why do we fall sir? So we might learn to pick ourselves up." Sometimes I think we need help. Sometimes it may be as simple as Alfred's reminder to Bruce. Get up. Yes you can.
Cancer is something I will have to live with forever. Mine is one that will come back. I will always worry about blood counts. I will always worry about other people being sick around me. But if I could do any one thing in this life, I would like to hold people's hands, lift them when they have fallen, encourage them, remind them of the things in this world worth living for. On a daily basis, I try pretend my cancer is not there and never was. I try to ignore it. But I can see how I will never escape its effects. Cancer has changed me.
I think I have dwelt on this topic long enough. It's time to get busy living again.
...Get up.
Yes you can.
I find now, after two years of chemo and enough scares and bone marrow samples since, anytime someone mentions cancer as an anecdotal story it sets me on edge. The hair on the back of my neck stands up. Like there are trigger words that might awaken the sleeping beast within me. My own Balrog or Lou Forigno, for the real geeks. With almost baited breathe I listened to David speak, Ira narrate, and I was glad I had hair on my neck again to be able to stand.
While they did not awaken the creatures of the deep, David said something I could not shake. It spurned me to write this. A reflection of my thoughts, of my emotions, woes and fears. The latter of which still seeks me out, …and in the darkness binds me. Ok, that should be the last LOTR reference. Maybe. Anyway, David said he regarded his cancer as if it never happened. I do the same.
Perhaps that is normal. Perhaps that is how we as humans try to cope with emotions and situations we feel are too great for us to handle. Denial of our various realities seems pretty normal to me. Though I do not know that such action is healthy, nor do I know how to act any other way. I like to ignore cancer as much as possible. I like to make jokes about it. While bald during my last round of chemo, I started introducing myself as Lex Luthor. I even found a picture of Gene Hackman in the role to use as my avatar on one of my social media sites. I am pretty sure I chose laughter in the face of calamity in hopes of fooling myself more than others. But you can never completely shake the underpinnings of terror.
Because of Mr. Rakoff, I feel I need to address this. Not for anyone else, but for myself. This is your pain. This is your burning hand. It's right here. Look at it. What? That's not LOTR.
It has been almost six months since I was told my CT results showed no signs of cancer. Since then I have run two half marathons, Hood To Coast, a 5k obstacle race, had a few "maintenance" doses of light weight chemo, a blood transfusion, bone marrow sample, and more anxieties than I care to admit. My cancer, Non Hodgkin's Lymphoma, is one that will come back. There is no known cure, and no guaranteed timeline.
One of my favorite movie quotes come from the Shawshank Redemption. Morgan Freeman's character Red said, "Get busy livin', or get busy dyin'." I have tried to apply the principle of this to much of my life. It is not a new concept either. Shakespeare through Hamlet asked if it was better to "suffer the slings and arrows of outrageous fortune, or to take arms against the sea of troubles, and by opposing end them". It's not much different. Do we act or let ourselves be acted upon? I chose to get busy livin'.
Maybe that is why I act loud and crack silly jokes at inappropriate times. Maybe it's because I choose to not wallow in the despair of my mortality. Maybe that is how I feel I am living. Do not misunderstand me. I acknowledge the need for every person to have their moments, when they are unavoidably overwhelmed by tidal waves of emotion. That is part of our human condition. Though for too many I see that as the reality in which they choose to dwell. Why? I cannot say. What does that serve? I do not know.
In light of such cancerous lives, the potential finality of it all rearing its ugly mottled snout, perhaps I have found some clarity in it all. With fatality looming over my head, I feel we should use it as the reminder to be passionate about our lives. What do we love? What is fantastic to us? What moves us? What carries us through those long days in our proverbial treatment rooms.
My poor mother started her first round of treatment, the same time I was getting my last dose of chemo. It may have been on the same day even. She has since finished a very difficult five months and was just told the results of her CT show cancerous cells still in her system. She will meet with the next oncologist and begin a heavy regiment of radiation treatment. This was the news I got today while beginning my day at work.
...SHIT!!
How am I supposed to get over that, compartmentalize and get on with my day? I find myself teetering between an uncontrollable outburst of tears, and aching to go all Tyler Durden on someone. Needless to say, I am not so well balanced or passive as I was a week ago.
When my mother was diagnosed, I was closing in on two years of treatment. One day, my father called me to tell me something she said. She had always told herself that if she got cancer or something horrible, she would not fight it. She would just roll over and die. But seeing all that I have gone through in the last few years, she had changed her mind, was willing to get chemo and fight.
That shook me up. That I could have had such an impact on another. While this was not the first I had impacted others, never had it been to this magnitude. At least not in my eyes. I will get to that in a minute. But while emailing back and forth today, my mother asked, "Ryan, why do some of us have to fight so hard to stay alive?" I responded with this picture. This is Mandy [my wife] and Lucy [our daughter] this summer at the beach for the 4th of July, 2012. Lucy had just turned two the month before.
I told my mother, "This is why. Other wise it would not matter."
Ok, now I think a little back story is necessary. I was diagnosed when I was 34. It was April 26th, 2010, a Monday. Non Hodgkins Lymphoma. I began the first round of treatment shortly after that. My wife was not with me on the day I was told about my cancer. She was on bedrest with Lucy. It is something she still feels great sorrow for missing. Really, that does not bother me in any way. I told her not to worry about it. That it was probably nothing and I was going to work after my doctor appointment anyway.
Lucy was born premature and spent weeks in the NICU. I was going to school and finishing finals while working and getting treatment. I would stop at the hospital on my way home for the day so I could see Lucy and hold her until I could not stay awake anymore, head home to start all over again the next day. The NICU nurses were nice to me. They offered to give me a delivery room across the hall for me to sleep in.
I finished finals, finished treatment, and checked in for surgery the same day they released Lucy. When it rains it pours. The surgery was completely unrelated to the cancer but I had put it off until after I finished the first round of chemo. Not wanting to get into that part of the medical mystery of me, I mention it only because it was another thing to deal with. It took a few months for me to be able to walk well after that surgery. That fall, I think in November, I attended my first Team In Training meeting.
Team In Training, TEAM or TNT, is the fundraising arm of the Leukemia and Lymphoma Society. They do endurance events like marathons, half marathons, triathlons, etc. to raise money for cancer. This meeting was an informational recruiting meeting. It was in a pub and there was a good amount of people there. They had one of the staff people talk a little about the nuts and bolts of TNT. They had a participant and cancer survivor talk about the impact of TNT. I knew we did not have the money to sign up, but after the meeting, I called my wife and choked out "I have to do this." Without hesitation, she said ok. So I signed up having never liked distance running, having never even run a 5K, and not knowing if my doctors would let me.
My oncologist conditionally gave approval for my running a half marathon, 13.1 miles, only if I was willing to walk when needed. I promised. He would not approve a full marathon. During training for that half, I was going through another round of treatment. I had my long day on Thursdays (5+ hours), then a short day on Friday, then we had our group run on Saturdays. The Saturday group runs are where we pushed ourselves farther each time. We met as a group, went over any announcements, did a team cheer, then got to running. As is to be expected, especially with a group specifically dedicated to raising funds for cancer, people ask. "How did you get involved..." "Why are you running..." etc. I hated that.
I hated that I didn't have a good answer without betraying all that I wanted left in the shadows. I hated sharing that I had cancer. Like I had done something to warrant getting cancer and that nobody would understand me. That people would ...I don't know. Revile me? Treat me as contagious? Treat me like a cancerous growth. It was one of the few times in my life where my ego was not the loudest voice. I knew then, I was not immortal. This could kill me.
I was ashamed of my cancer.
I wanted to withdraw from life. Not die, just not see anyone. If I felt there was anything more to the casual greeting "How you doin'?" I wanted to punch them. I wanted to scream obscenities to anyone whose gaze fell a little too long on me, to emotional passers bye, to the heavens. I would rather have been able to get in a fight, feeling the immediate physical pain, inflicting pain on those whom I fought, and not this emotional torment and unseen agressor. This was hell. This left monsters hidden in the shadows of my soul. And I didn't know what to do with that.
When people asked why I was doing TEAM, I hope I just looked socially awkward and said something like a close family member was battling Lymphoma. If any of that other stuff came out, I apologize to any undeserving recipient.
As we began our training in January, there were days when I knew I could not run. It was too cold outside for someone with such a compromised immune system such as I had. I would still go and try to be there to cheer on my teammates. To be honest, I was there as much for my support as my teammates. Being there helped me feel better. It helped me feel like I could make it through treatment. It was empowering when I just wanted to quit.
There was only one day I started that I could not finish. It was a Saturday directly after two consecutive days of chemo. I had done a little over three miles, and thought I was going to black out. Coach Karl and Coach Jen ran with me that day. We got to the water station that was set up, and I quit. I got a ride back with the person that was manning that station after everyone had gone through. It was rough.
I had no idea the impact that I was having on my teammates. I actually did not know until my race weekend. I had finished that round of chemo by about a month, and literally one week before the race I was hospitalized with pneumonia. I hesitated to ask my oncologist, almost pleading, "Can I still run?" He consented saying it would not hurt my lymphoma, but I would be tired. Remember to walk when I needed.
Seattle Rock N Roll Marathon 2011.
One of my teammates had her maternal instincts kick in. Rene refused to leave my side the whole race because she was too worried about me. When I began the season, I thought with my former rugby player ego, "Shoot! I can run a full marathon. Cancer won't stop me." By the time I got to the starting line, I just wanted to cross the finish line on my own feet, without dying. I was glad to have Rene run with me. It was comforting. I don't remember exactly where along the course, but about mile 7 or 8, I happened to look down at the back of Rene's race shirt. As is the same for many charity groups, there is a place on the back of all TEAM shirts to write in the names of those for whom you run, those that keep you going, those you remember. Well I saw my name there. My name on her shirt. Surely that must have been someone else. So I asked. "Is that, is that MY name?" Yes. Maybe my emotions are extra close to the surface today, but I am still getting choked up over that. That I could have such an impact on another in a positive way. It is a powerful thing. I found out that several of my teammates that weekend had done the same. I had no idea.
Thank you Rene. Thank you Christine.
Another teammate told me after the race, that early in our training on one of those days when I could not run because of the cold weather, as he came around the last corner I yelled out to him, cheering him on. He said he knew at that moment, he would finish that race because of me.
That weekend changed my life. I knew I could not repay to my teammates what they had done for me. I knew I would always be a part of Team In Training.
A few months ago, when my father told me of my mother's decision to undergo treatment because of the struggles she had seen me endure, I had another of those moments. When my wife asked me if I thought our daughter Lucy had helped me get through my struggles with cancer, I knew before she asked. Yes. We have four children, and I love each of them immensely, but there is no question the grand design of the universe had that one timed out for a reason.
I do not like to dwell on my cancer. Not publicly anyway. Not socially. Cancer is a downer. I try to make people laugh. I like to help people feel empowered. I go to art school because I like to make cool stuff. To others it may seem I, like David Rakoff, pretend my cancer does not exist. Good. I try. Maybe I do because others may think their problems are more manageable if they see me doing well. Maybe it's just because I do not like to acknowledge my mortality. I don't know why.
Whatever my reasons, there are times when I cannot keep from sliding into despair. It happens to everyone. It is for those that need the help to get up and keep going that I try to do all that I can.
"Why do we fall sir? So we might learn to pick ourselves up." Sometimes I think we need help. Sometimes it may be as simple as Alfred's reminder to Bruce. Get up. Yes you can.
Cancer is something I will have to live with forever. Mine is one that will come back. I will always worry about blood counts. I will always worry about other people being sick around me. But if I could do any one thing in this life, I would like to hold people's hands, lift them when they have fallen, encourage them, remind them of the things in this world worth living for. On a daily basis, I try pretend my cancer is not there and never was. I try to ignore it. But I can see how I will never escape its effects. Cancer has changed me.
I think I have dwelt on this topic long enough. It's time to get busy living again.
...Get up.
Yes you can.
Running with Kara Goucher
No, I have never run with or even met Kara Goucher. I fanned her on FaceBook though. And that almost makes us BFF's, right? Well, maybe not. Anyway, there is a quote of hers that describes how I feel about running. It helps me continue running when I am tired or it's cold outside.
"That's the thing about running: your greatest runs are rarely measured by racing success. They are moments in time when running allows you to see how wonderful your life is." -Kara Goucher
Thank you Ms. Goucher.
"That's the thing about running: your greatest runs are rarely measured by racing success. They are moments in time when running allows you to see how wonderful your life is." -Kara Goucher
Thank you Ms. Goucher.
My name is... TEAM!
"Hello. My name is Ryan. I am a cancer survivor. Well, I think... Hm. I am a cancer... mitigator? Delayer of cancer? I am a cancer ...temporary reprieve-er."
When the doctor told me of my remission, his actual words were that test results "show no sign of the disease." What does that mean?! I still have to go in for treatment. It's a very light dose once every two months. It's still no treat. This process has shown to significantly delay the eventual return of cancer. Yes, eventual. It will return. So am I a survivor?
As a matter of semantics, I do not think I qualify. How about, "Hello. My name is Ryan. I am a survivor of multiple rounds of chemo therapy and am in temporary reprieve from, be that however long, the eventual return of cancer."
That just sounds so lame. I am a survivor of two half marathons while going through three rounds of chemo. I am member of Team In Training.
"Hello. My name is Ryan. ...I'm a freakin' Superhero!"
You are members of an elite TEAM. We are the champions of fundraising. Of sweat. Of aches and pains and chaffing in places we dare not name. We are the ones hosting parties to auction off our friends but not in a Sin City sort of way. We bake chocolate chip zucchini muffins and offer them up to anyone within our friend's friend's Facebook circles hoping they trust us to not put arsenic in the special ingredients. Or trusting to not put any "special ingredients" in to begin with.
We crawl out of bed, sometimes falling more than anything, to step into running shoes and clothes that might still stink of the previous run but have dried so we put them back on because we hate doing laundry more than we deem necessary. So yes, sometimes our odor doth offend.
I am okay with that. Just don't expect any post race spooning from me, Mike Hilliard.
We gather. We cheer. We run. We stop and talk for WAY too long while getting water. We run some more. We cheer each other on when we see each other going the other way. We might be a little lost. We wish our legs and lungs would just freaking do what our coaches and captains are telling us to do. And could they please do it with less burning? We finish sweaty. We devour gummy bears at alarming rates. We rub sticks on our sweaty parts then offer the stick to the next in line. We take that stick and perform the same ritual.
We take really stupid pictures of each other. 4 or 500 of them. We post them on Facebook so our non-runner non-cancer friends can be annoyed that their lazy bits are still looking at Facebook instead of doing something.
We annoy everyone we meet to raise just one more dollar to fight cancer. We do that while wearing purple. We cheer some more. We are a part of Team In Training.
We are all, Superheros.
When the doctor told me of my remission, his actual words were that test results "show no sign of the disease." What does that mean?! I still have to go in for treatment. It's a very light dose once every two months. It's still no treat. This process has shown to significantly delay the eventual return of cancer. Yes, eventual. It will return. So am I a survivor?
As a matter of semantics, I do not think I qualify. How about, "Hello. My name is Ryan. I am a survivor of multiple rounds of chemo therapy and am in temporary reprieve from, be that however long, the eventual return of cancer."
That just sounds so lame. I am a survivor of two half marathons while going through three rounds of chemo. I am member of Team In Training.
"Hello. My name is Ryan. ...I'm a freakin' Superhero!"
You are members of an elite TEAM. We are the champions of fundraising. Of sweat. Of aches and pains and chaffing in places we dare not name. We are the ones hosting parties to auction off our friends but not in a Sin City sort of way. We bake chocolate chip zucchini muffins and offer them up to anyone within our friend's friend's Facebook circles hoping they trust us to not put arsenic in the special ingredients. Or trusting to not put any "special ingredients" in to begin with.
We crawl out of bed, sometimes falling more than anything, to step into running shoes and clothes that might still stink of the previous run but have dried so we put them back on because we hate doing laundry more than we deem necessary. So yes, sometimes our odor doth offend.
I am okay with that. Just don't expect any post race spooning from me, Mike Hilliard.
We gather. We cheer. We run. We stop and talk for WAY too long while getting water. We run some more. We cheer each other on when we see each other going the other way. We might be a little lost. We wish our legs and lungs would just freaking do what our coaches and captains are telling us to do. And could they please do it with less burning? We finish sweaty. We devour gummy bears at alarming rates. We rub sticks on our sweaty parts then offer the stick to the next in line. We take that stick and perform the same ritual.
We take really stupid pictures of each other. 4 or 500 of them. We post them on Facebook so our non-runner non-cancer friends can be annoyed that their lazy bits are still looking at Facebook instead of doing something.
We annoy everyone we meet to raise just one more dollar to fight cancer. We do that while wearing purple. We cheer some more. We are a part of Team In Training.
We are all, Superheros.
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