Maybe I have tried to let go of cancer. As if distancing myself could lessing the fears and anxieties that crash upon the shoreline of my waking daily trudgery. Maybe… That imagery may be appropriate as the ocean smooths jagged rock, with undetected force lets the passing of time change the very shape of our world. Perhaps it just takes time to let go.
I've not posted anything in almost a year. It's been weird. Cancer becomes such an encompassing majority of your everyday. Even when I am remission and it seems to fade in my mind, I cannot get away from it. My mother recently gave us all a scare. Thrown into that wonder of uncertainty again, this time I wondered if it was her time. With it comes not knowing how to react. What to do or not do. How to feel. Or should I try to burry it all and not feel.
If these are to be her final hours, can I put aside my own ego and focus on her? Before too long she could go, leaving my father. My father. A man from whom I learn emotion is the opposite of weakness. As much as I feel the need to put aside my own insecurities for my mother, I need to do the same for my father. A man who may be lost without my mother.
I love them both. Neither should have to suffer, either in death or in struggling to live afterwards.
I have never said this enough. I love you. And if I could take a few more years of that hell called chemo dripped into our veins, just to take it from you, to give you a few more years, years without that same hell, a few more healthy years with Dad, with my kids as they grow, with me, …I would.
But it doesn't work that way. I can't make it work that way. And I am sorry.
My mother once asked me, as she felt she was doing well while her friend was losing her battle, how to treat that friend. How do I sit there [in chemo] and look at her knowing she will not make it and I will? How do I treat her? My answer is vastly different now. Though I feel my advice was sound, I lack my conviction and fortitude of only a couple years ago. Because now it is my mother who may not reach the finish for which we all hope.
Mom, what do I say when I look you in the face, knowing I made it and you will not?
…I don't know.
Showing posts with label Remission. Show all posts
Showing posts with label Remission. Show all posts
Thursday, May 7, 2015
Thursday, April 24, 2014
Guilt
"How do you deal with the horrible guilt of knowing you are going to make it and someone else isn't?" was a question posed to me in the last few months. To be honest, there are very few people with whom I have been close that have gone through chemo. Well not that I know of. The closest of those I do know is my mother, who began her chemotherapy as I was ending mine. Only my Team In Training (TNT) teammate Lisa did not make it. As I thought about my answer, I thought of Lisa. I advised the person asking to find a common interest shared between the two and do that for the friend that will not make it. For Lisa, my teammate, I ran. In frustration I ran because that is what we shared. Both participants and fundraisers for the Leukemia and Lymphoma Society (LLS) while going through treatment, we connected through running and our TNT friends.
Now, six months after Lisa passed, I reconsider my response. April 21st 2014, I got my port removed. It was a very emotional day. At times I was elated. So happy that I could be done with that part of my life. Worried that it was all a delusion. That I would wake up still six months from being told I was in remission, and still not knowing if that day would ever come. Time seems to become an irregularity rather than a constant while going through chemo. Some days are blurry and you are not sure they really happen. Some days are fine.
The reality of time has set in and my port is out. I keep feeling my collarbone where I used to be able to feel the tube running from the port to the vein. A slight and squishable bump under the skin but on top of my left collarbone. My chest is still too tender for me to poke and prod though the place where the prongs from my port used to stick up is now only a yellowing bruise around the healing incision line. I kind of feel that part of me is missing like a soldiers amputated limb. Obviously different as I do not want it back; I do not miss it. Still, a part of me seems missing.
Monday, while very emotional, was a very happy day. The next day, April 22nd, my mother started another round of chemo. This one should not be as hard for her as her last round. Even though it is going to be more manageable this time, I still feel for her. And I wondered about that guilt. Worse, that same day my wife and I found out another friend of ours who has been struggling with her own fight, had gotten much worse. She just found out that her cancer had spread to her brain, liver, and a number of other organs. The following day, the 23rd, she passed. Once the cancer spreads, especially to major organs, there is little chance to make it.
I have been racked with guilt since. That I am better, even if my oncologist told me it will come back, and she did not make it. What right do I have to be better? She was married and had children too. She leaves behind a tormented spouse. She was a wonderful person.
How is that fair?
...Knowing full well what it would feel like, I would gladly take a few more years of treatment and suffering if it could let her live.
And I know it wouldn't work. But if- if.
So what can I do, because I cannot allow myself to do nothing. I run. I raise money to fund the research to end cancer. I want to go one step further than curing the disease. I want to prevent it. Team In Training and all the other programs that are a part of the LLS are trying to do the same. But I found solace in TNT. My teammates lift me and inspire me when I am weak or when I want to give up. My shoes are worn out. It hurts to run. I cannot afford to buy new ones right now but I still put on my shoes and run.
I think it is the only way I feel I am paying penance for getting better. I am trying to help pay for my making it when others have not.
I would dearly love for you to help as well. Please take a minute and donate to the LLS to help end cancer. I try to make it as easy as possible for you to do so. There is a donation tool on the side of my page. Just click and donate.
Thank you.
Now, six months after Lisa passed, I reconsider my response. April 21st 2014, I got my port removed. It was a very emotional day. At times I was elated. So happy that I could be done with that part of my life. Worried that it was all a delusion. That I would wake up still six months from being told I was in remission, and still not knowing if that day would ever come. Time seems to become an irregularity rather than a constant while going through chemo. Some days are blurry and you are not sure they really happen. Some days are fine.
Monday, while very emotional, was a very happy day. The next day, April 22nd, my mother started another round of chemo. This one should not be as hard for her as her last round. Even though it is going to be more manageable this time, I still feel for her. And I wondered about that guilt. Worse, that same day my wife and I found out another friend of ours who has been struggling with her own fight, had gotten much worse. She just found out that her cancer had spread to her brain, liver, and a number of other organs. The following day, the 23rd, she passed. Once the cancer spreads, especially to major organs, there is little chance to make it.
I have been racked with guilt since. That I am better, even if my oncologist told me it will come back, and she did not make it. What right do I have to be better? She was married and had children too. She leaves behind a tormented spouse. She was a wonderful person.
How is that fair?
...Knowing full well what it would feel like, I would gladly take a few more years of treatment and suffering if it could let her live.
And I know it wouldn't work. But if- if.
So what can I do, because I cannot allow myself to do nothing. I run. I raise money to fund the research to end cancer. I want to go one step further than curing the disease. I want to prevent it. Team In Training and all the other programs that are a part of the LLS are trying to do the same. But I found solace in TNT. My teammates lift me and inspire me when I am weak or when I want to give up. My shoes are worn out. It hurts to run. I cannot afford to buy new ones right now but I still put on my shoes and run.
I think it is the only way I feel I am paying penance for getting better. I am trying to help pay for my making it when others have not.
I would dearly love for you to help as well. Please take a minute and donate to the LLS to help end cancer. I try to make it as easy as possible for you to do so. There is a donation tool on the side of my page. Just click and donate.
Thank you.
Friday, January 31, 2014
Training Time Again!!
When the doctor tells you you have cancer, it does not seem real. I was shocked and in disbelief, not knowing what to think or how to feel. You look in the mirror. You force yourself to say the words, as if repetition makes it tangible, “...I have cancer.” …None of it makes any sense.
My name is Ryan. I am a cancer survivor! I run for Team In Training.
I was diagnosed in April of 2010. Marginal zone, stage three, Non Hodgkins Lymphoma. Cancer. What I have come to understand is that my cancer was too widespread throughout my body to cut out, and with treatment I could one day hope to reach remission. But I will not be cured. 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.
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. To others it may seem I pretend my cancer does not exist. Good. I try. Maybe I do because others might 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.
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. That is the essence of what Team In Training is. For me it is anyway. It champions taking action to end cancer. Team In Training raises money to fund research for cures and supports patients in treatment. More than just cancer though, it is about helping others as it has helped me. Team In Training helped me get through three and a half years of chemo. For that alone, I am forever grateful to TNT. Team In Training became my support group while going through chemo.
As of Sept 26th, my oncologist said I am cancer free! I can get my port taken out! After three and a half years, that is an awesome and humbling thing to hear. During that time, I ran a number of half marathons to raise money for TNT and I am going to run another for all those that need help to fight cancer. And everyone needs help.
I am asking that you please do all you can to support and help the fight against cancer. Any amount is great, every dollar counts.
I thank you with all my heart,
-Ryan
My name is Ryan. I am a cancer survivor! I run for Team In Training.
I was diagnosed in April of 2010. Marginal zone, stage three, Non Hodgkins Lymphoma. Cancer. What I have come to understand is that my cancer was too widespread throughout my body to cut out, and with treatment I could one day hope to reach remission. But I will not be cured. 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.
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. To others it may seem I pretend my cancer does not exist. Good. I try. Maybe I do because others might 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.
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. That is the essence of what Team In Training is. For me it is anyway. It champions taking action to end cancer. Team In Training raises money to fund research for cures and supports patients in treatment. More than just cancer though, it is about helping others as it has helped me. Team In Training helped me get through three and a half years of chemo. For that alone, I am forever grateful to TNT. Team In Training became my support group while going through chemo.
As of Sept 26th, my oncologist said I am cancer free! I can get my port taken out! After three and a half years, that is an awesome and humbling thing to hear. During that time, I ran a number of half marathons to raise money for TNT and I am going to run another for all those that need help to fight cancer. And everyone needs help.
I am asking that you please do all you can to support and help the fight against cancer. Any amount is great, every dollar counts.
I thank you with all my heart,
-Ryan
Wednesday, January 15, 2014
A Letter to a Friend
"First, let me say how sorry I am for your diagnosis. To be told you have cancer of any kind is never something you want to hear. When I was told, it took a while for that to actually register. Then even longer before it seemed real. That was three and a half years ago, and I still feel like it is a foreign concept. And now to be told I am done is almost equally as strange. I wanted to be able to reach out to you and tell you many things. As insensitive as it may seem to do this over email, it is a conscious choice to allow you your privacy. My privacy was one of the things I wanted most. I want to extend to you the courtesy of letting you digest this in private, without the world looking at you. There are few things I wish I could have known or told myself as I started the last three and a half years. If I may be so bold, please let me tell you.
When you posted the announcement on FB, the diagnosis was not yet complete. It may still not be. When the doctor told me, it sent me into a series of tests and biopsies with periods of anxious waiting and tormented uncertainty. Unfortunately, that does not end with the results of your diagnosis. This may be the single biggest unspoken thing. Through all of it, doctors and nurses will tell you what to expect in reaction to your treatment. But they are physical reactions. What no one told me was how I would be turned into a neurotic hypochondriac. There is a "wait and see" period for everyone and it is terrible.
Typically, people go through a round of treatment which consists of several doses of chemo or radiation or whatever. My chemo schedule was once a month for six months, then nothing for six months. That's the wait and see. At the end of that you go back in for more tests, blood work, and anything the doctor feels is needed. That period between your last dose for the round, and results from the tests is emotionally exhausting. Yes, the rest from the physical reactions is a very welcome relief. But the emotional drag of not knowing can be brutal.
No one ever told me. Not that knowing would have made me less anxious or emotional but maybe I would have had a little easier time knowing that was normal.
Next, I alluded to this already but privacy is big and also very emotional. You are now going through a very personal and emotional thing. It is not easy. There will be days when you are fine and feel okay. There will be days when you are not. You will feel sick. You will feel tired. You will want to retreat to your comfort zone(s) and tell the world to go to Hell. I realized that one day when I put on a hat not to hide my baldness, but to hide me. I just wanted to be a non entity for a while. Nobody talk to me, nobody look at me, just leave me alone. When people asked me how I was feeling or how I was doing, if there was any hint of intonation beyond a standard less sincere American greeting, I wanted to claw their faces off. I wanted to fight as if they were the representation of all my misery. As if fighting them would deliver the beat down I so desperately wanted to administer but of which was undoubtedly incapable. I hope that such emotion was not what came across. I hope my response was just as shallow as the question, "I'm fine. Thank you."
You may even feel that tendency to retreat from your close friends and family. Fight that. Curb that as they are there and just want to hold your hand. To help you feel better, to encourage you and keep you going. Let them. I have the bad habit of unintentionally feeling like my suffering is mine alone and it is stupid for anyone else to have "sympathy pains." But like it or not, it happens. Let it. It is perfectly acceptable to have your withdrawal time and days, especially as the physical traits of treatment become more pronounced, but shut out the out world. Not your family.
You will find that the world will not stop and wait for you. Bills are still due, children still need a bath, husbands still need to be told they're smart and important. And that is another important lesson learned. One of my favorite movie quotes of all time is from The Shawshank Redemption. Morgan Freeman's character said, "Get busy liven', or get busy dyin'." The principle of this is that we cannot choose what happens to us. But we can certainly choose how we react. With a diagnosis of cancer in any stage, the world gives you permission stop living. And you can if you choose. Or you can pick your self up, shake it off, and move on. That is not to say you will not fall down again. We all fall down. When that inevitably happens, if you look, you will see those around you that clamor to offer the hand to pick you back up. When this happens, sooner or later I always another favorite movie quote. This time Michael Cain as Aflred, to Bruce Wayne, "Get up. Yes you can."
I do not know the extent of your cancer. I do not know how the treatment will affect you. I do not understand the fear and loss you might feel at the prospect of a mastectomy. I will not sugar coat it and say everything will be fine. No one knows that. And I am sorry. But you can decide to keep trying. Decide before it happens, when you fall down, to get up and carry on. So what if the kids go an extra day without a bath. So what if you just have a pizza delivered because you are both too tired to make anything. None of that matters. Don't let such trivial things become the obstacles that trip you up.
Cancer became my way of life. I got used to it. I knew with earned precision when I would start feeling sick or tired after a treatment. I knew when that would pass. I knew when chemo brain was thick in my head. None of that is pleasant. But you can get through it. Sometimes, you may need to just hold one of your children to help you through the day. It's okay. At times you will live day to day with the relentless swelling of emotional tides. Find what helps you get through it. I have held my children. I started running. I have wept into the arms of my wife. I have over caffeinated to get through a day (or two). Whatever. Whatever works for you, use that as a tool to get on with your life.
Rely heavily on the gospel. I wish I could have done that. I learned in retrospect that I had gained a far deeper appreciation for the Atonement than I ever though possible. It should not be surprising. What you will go through is emotional suffering that will become a lens through which you can see so many others' plights in a more sincere manor. I do not know what it is like to lose a child like the Zohars. But I know what is like to suffer and to hurt. That compassion, I feel, must be the minutest part of the love our Heavenly Father and Christ must feel for us. Just as God had to withdraw while Jesus hung on the cross, they knew this suffering would be terrible for us and for them. But they have a far greater understanding of the eternal implications that we cannot see. Many times I have been on my knees weeping and wailing. Crying out in my anger and in my frustration, "why me? Why me!" Though I do not think we get answers that we can understand to all our questions, I have rarely had an answer as clear to me as was my answer to that question. And I lack the ability to fully explain it. Well, not without writing a War and Peace length dissertation. I will summarize only by saying that such suffering is ultimately for our benefit. And I apologize for the inadequacies of that statement.
Perhaps that is the most important of all to keep in mind. This life, with all it's ups and downs, is ultimately for our benefit. It may take a lifetime to understand that. It may take longer. I have learned enough to make my peace with it, whether I fully comprehend the answers or not.
Lastly, and a complete change of topic, I wish to address the physical aspect of treatment. Perhaps more for Travis to understand what you will likely go through and feel, so he may relate. But maybe it will help endure it as well. Chemo brain is real. It is like a thick fog of confusion presses in on your brain. You cannot swat it away like flies. It is like a clamp that squeezes in on your head. It doesn't hurt like a migraine. But it disallows you to think and focus clearly on life. It comes and goes and there is nothing you can do about it.
Also, you will have fatigue. This is different than being tire. Fatigue will make you feel heavy. When you go to the dentist and they put the lead ascot on you before taking X-rays, and you feel 30 lbs. heavier all over, that is what fatigue feels like. It is all over. I felt it most in my shoulders and arms. They felt like they dragged me down until I could not walk upright for their weight. When you sit down, you will often nod off like narcolepsy. Though sleeping will not take the tire away. You wake from a nap, intentional or not, feeling just as heavy and worn out. As long as you are not driving or cooking or something, don't fight it. Just roll with it. You will be out for a bit then wake up later and try to get on with life.
Nausea will hit as well. Though from what I hear, it is not as different that pregnancy nausea. You feel horrible and just want to throw up to feel better. Just like napping does not stop fatigue, puking will not stop the nausea. Sorry. I tried any number of things to help. Ginger candies as ginger is a natural stomach aid, crackers, prescription medication, soda water, whatever I could think of and all in combination with each other. Some things helped. My mother loves Diet Dr. Pepper but the though of it while in treatment makes her want to puke. Your tastes may change. Your doctors and nurses will keep an eye on your weight. You do not want to loose too much weight because it starts to compromise your body's ability to fight and recover. Make sure you find something you can keep down when you don't want to. Protein diet shakes like Ensure or Boost or even the Costco/Slimfast things are not bad for this. You get proteins and needed vitamins and minerals and you can do it quickly without having to chew anything. Again, find what works for you.
Having gone through it, and not really sure I believe the doctor's merciful words of remission, I understand what suffering is. I will tell you, when you start losing hair, I will shave my head again so you know you are not the only person to have to go through that. :)
If you guys have any questions or need anything including dinners, babysitting, a game night or even just need to hang out with people that have been through it, please do not hesitate to ask. We will be there.
This will be a difficult journey for you. Use your friends to help you as much as you can. "Get up. Yes you can."
Most sincerely,
-Ryan"
When you posted the announcement on FB, the diagnosis was not yet complete. It may still not be. When the doctor told me, it sent me into a series of tests and biopsies with periods of anxious waiting and tormented uncertainty. Unfortunately, that does not end with the results of your diagnosis. This may be the single biggest unspoken thing. Through all of it, doctors and nurses will tell you what to expect in reaction to your treatment. But they are physical reactions. What no one told me was how I would be turned into a neurotic hypochondriac. There is a "wait and see" period for everyone and it is terrible.
Typically, people go through a round of treatment which consists of several doses of chemo or radiation or whatever. My chemo schedule was once a month for six months, then nothing for six months. That's the wait and see. At the end of that you go back in for more tests, blood work, and anything the doctor feels is needed. That period between your last dose for the round, and results from the tests is emotionally exhausting. Yes, the rest from the physical reactions is a very welcome relief. But the emotional drag of not knowing can be brutal.
No one ever told me. Not that knowing would have made me less anxious or emotional but maybe I would have had a little easier time knowing that was normal.
Next, I alluded to this already but privacy is big and also very emotional. You are now going through a very personal and emotional thing. It is not easy. There will be days when you are fine and feel okay. There will be days when you are not. You will feel sick. You will feel tired. You will want to retreat to your comfort zone(s) and tell the world to go to Hell. I realized that one day when I put on a hat not to hide my baldness, but to hide me. I just wanted to be a non entity for a while. Nobody talk to me, nobody look at me, just leave me alone. When people asked me how I was feeling or how I was doing, if there was any hint of intonation beyond a standard less sincere American greeting, I wanted to claw their faces off. I wanted to fight as if they were the representation of all my misery. As if fighting them would deliver the beat down I so desperately wanted to administer but of which was undoubtedly incapable. I hope that such emotion was not what came across. I hope my response was just as shallow as the question, "I'm fine. Thank you."
You may even feel that tendency to retreat from your close friends and family. Fight that. Curb that as they are there and just want to hold your hand. To help you feel better, to encourage you and keep you going. Let them. I have the bad habit of unintentionally feeling like my suffering is mine alone and it is stupid for anyone else to have "sympathy pains." But like it or not, it happens. Let it. It is perfectly acceptable to have your withdrawal time and days, especially as the physical traits of treatment become more pronounced, but shut out the out world. Not your family.
You will find that the world will not stop and wait for you. Bills are still due, children still need a bath, husbands still need to be told they're smart and important
I do not know the extent of your cancer. I do not know how the treatment will affect you. I do not understand the fear and loss you might feel at the prospect of a mastectomy. I will not sugar coat it and say everything will be fine. No one knows that. And I am sorry. But you can decide to keep trying. Decide before it happens, when you fall down, to get up and carry on. So what if the kids go an extra day without a bath. So what if you just have a pizza delivered because you are both too tired to make anything. None of that matters. Don't let such trivial things become the obstacles that trip you up.
Cancer became my way of life. I got used to it. I knew with earned precision when I would start feeling sick or tired after a treatment. I knew when that would pass. I knew when chemo brain was thick in my head. None of that is pleasant. But you can get through it. Sometimes, you may need to just hold one of your children to help you through the day. It's okay. At times you will live day to day with the relentless swelling of emotional tides. Find what helps you get through it. I have held my children. I started running. I have wept into the arms of my wife. I have over caffeinated to get through a day (or two). Whatever. Whatever works for you, use that as a tool to get on with your life.
Rely heavily on the gospel. I wish I could have done that. I learned in retrospect that I had gained a far deeper appreciation for the Atonement than I ever though possible. It should not be surprising. What you will go through is emotional suffering that will become a lens through which you can see so many others' plights in a more sincere manor. I do not know what it is like to lose a child like the Zohars. But I know what is like to suffer and to hurt. That compassion, I feel, must be the minutest part of the love our Heavenly Father and Christ must feel for us. Just as God had to withdraw while Jesus hung on the cross, they knew this suffering would be terrible for us and for them. But they have a far greater understanding of the eternal implications that we cannot see. Many times I have been on my knees weeping and wailing. Crying out in my anger and in my frustration, "why me? Why me!" Though I do not think we get answers that we can understand to all our questions, I have rarely had an answer as clear to me as was my answer to that question. And I lack the ability to fully explain it. Well, not without writing a War and Peace length dissertation. I will summarize only by saying that such suffering is ultimately for our benefit. And I apologize for the inadequacies of that statement.
Perhaps that is the most important of all to keep in mind. This life, with all it's ups and downs, is ultimately for our benefit. It may take a lifetime to understand that. It may take longer. I have learned enough to make my peace with it, whether I fully comprehend the answers or not.
Lastly, and a complete change of topic, I wish to address the physical aspect of treatment. Perhaps more for Travis to understand what you will likely go through and feel, so he may relate. But maybe it will help endure it as well. Chemo brain is real. It is like a thick fog of confusion presses in on your brain. You cannot swat it away like flies. It is like a clamp that squeezes in on your head. It doesn't hurt like a migraine. But it disallows you to think and focus clearly on life. It comes and goes and there is nothing you can do about it.
Also, you will have fatigue. This is different than being tire. Fatigue will make you feel heavy. When you go to the dentist and they put the lead ascot on you before taking X-rays, and you feel 30 lbs. heavier all over, that is what fatigue feels like. It is all over. I felt it most in my shoulders and arms. They felt like they dragged me down until I could not walk upright for their weight. When you sit down, you will often nod off like narcolepsy. Though sleeping will not take the tire away. You wake from a nap, intentional or not, feeling just as heavy and worn out. As long as you are not driving or cooking or something, don't fight it. Just roll with it. You will be out for a bit then wake up later and try to get on with life.
Nausea will hit as well. Though from what I hear, it is not as different that pregnancy nausea. You feel horrible and just want to throw up to feel better. Just like napping does not stop fatigue, puking will not stop the nausea. Sorry. I tried any number of things to help. Ginger candies as ginger is a natural stomach aid, crackers, prescription medication, soda water, whatever I could think of and all in combination with each other. Some things helped. My mother loves Diet Dr. Pepper but the though of it while in treatment makes her want to puke. Your tastes may change. Your doctors and nurses will keep an eye on your weight. You do not want to loose too much weight because it starts to compromise your body's ability to fight and recover. Make sure you find something you can keep down when you don't want to. Protein diet shakes like Ensure or Boost or even the Costco/Slimfast things are not bad for this. You get proteins and needed vitamins and minerals and you can do it quickly without having to chew anything. Again, find what works for you.
Having gone through it, and not really sure I believe the doctor's merciful words of remission, I understand what suffering is. I will tell you, when you start losing hair, I will shave my head again so you know you are not the only person to have to go through that. :)
If you guys have any questions or need anything including dinners, babysitting, a game night or even just need to hang out with people that have been through it, please do not hesitate to ask. We will be there.
This will be a difficult journey for you. Use your friends to help you as much as you can. "Get up. Yes you can."
Most sincerely,
-Ryan"
Thursday, September 26, 2013
Am I Done???
I didn't say anything about this after my last dose of chemo. I didn't say anything because I didn't want to get my hopes up by saying it out loud, or even typing it. Where I thought I had one more dose of chemo before I could hope to be done, I was informed that this last one was in fact, my LAST one. ...no way.
Pending test results of the CT which I had this morning, and the result came back the same as the last one, "Shows no signs of lymphoma," I am done. I am done.
I can't say it enough for it to sink in. I am done.
It's been three and a half years of chemo. It has become the way life is. I have no choice but to take another hit and let the fog roll in. Am I really done? In six months are they going to say they made a mistake? Am I going to get my port taken out of my chest only to need it put back in?
AM I REALLY DONE???
...oh please let it be so. Please just let me be done.
The doctor said I am done. We can take the port out.
I am done.
If you know this picture, you know exactly how I feel. I make no apologies for the language. I feel like I "crawled through a river of shit and came out clean on the other side."
Pending test results of the CT which I had this morning, and the result came back the same as the last one, "Shows no signs of lymphoma," I am done. I am done.
I can't say it enough for it to sink in. I am done.
It's been three and a half years of chemo. It has become the way life is. I have no choice but to take another hit and let the fog roll in. Am I really done? In six months are they going to say they made a mistake? Am I going to get my port taken out of my chest only to need it put back in?
AM I REALLY DONE???
...oh please let it be so. Please just let me be done.
The doctor said I am done. We can take the port out.
I am done.
If you know this picture, you know exactly how I feel. I make no apologies for the language. I feel like I "crawled through a river of shit and came out clean on the other side."
Monday, July 22, 2013
Another One Gone, Another One Gone...
Maybe two weeks ago, I had another dose of chemo. This was another maintenance dose and a checked off round, edging ever closer to the end of it all. ...I hope.
In my head I keep singing Another One Bites the Dust. But I am a bit concerned. I ran a couple times this last week, not as many runs as I would have liked but all things considered, I did pretty well. One of my runs was just over six miles and I kept an average 10:23 pace per mile. Not my best but not bad for an old man. The problem is, and why I have been concerned is that I do not feel like I am recovering. Recovery has many parts to it. The first part is energy level, how quickly you regain a "normal" level of energy after your run. On longer runs, sometimes a nap after you shower and stuff is needed. After the energy level comes the muscle soreness. That's what more people think of when thinking about recovery. Are you sore the next day? Can you walk? Can you go back out and run again? I can go out and run up to ten miles without having to really even think about soreness. But this time, I cannot recover the energy level.
This goes beyond the immediate need for a nap. For me, it has been maybe four days and I am still exhausted. It goes beyond that too. I have been super tired for a few weeks now. The last time I felt like this was a year ago when I was training for Hood To Coast, a relay race running in legs from Mt Hood to Seaside in Oregon. In training for that, I had one run where I did 13.1 miles and thought I was going to die. Not as in a whiny sort of way where you are just not fit enough to complete a run without really sucking wind, but I was afraid I might not make it home. I was literally hallucinating on that run. When I could not recover, I called my oncologist who ran some blood test to find out that I was almost two liters low on red blood. Understandably, that was my worst run ever.
Feeling the same or similar now, I called oncology today. When I went in a couple weeks ago, I mentioned how tired I have been lately. The CBC (Complete Blood Count) showed everything as fairly normal for my levels, though. So I went ahead with the chemo dose as that gets me one step closer to being done with everything. Doctor Oncologist told me to keep an eye on it though and see if we need to look at something else as to the cause of the fatigue. So I called. Usually, it takes me about a week to overcome the normal fatigue from a round of treatment. The last round was unusually difficult on me, and this round is not seeming to be any easier.
I do not know what it could be, but it has me a bit worried. What if- You know?
With the call to oncology, I am waiting for the call back to see what the doctor wants to do. I want to run tests and try to rule everything out or find something so it can be addressed and fixed. Maybe that is part of the problem. Insurance got cancelled, and we cannot pay for more tests or treatment. It worries me.
I keep saying I am just old. Is that it? Is this what being old is like? Because this sucks.
In my head I keep singing Another One Bites the Dust. But I am a bit concerned. I ran a couple times this last week, not as many runs as I would have liked but all things considered, I did pretty well. One of my runs was just over six miles and I kept an average 10:23 pace per mile. Not my best but not bad for an old man. The problem is, and why I have been concerned is that I do not feel like I am recovering. Recovery has many parts to it. The first part is energy level, how quickly you regain a "normal" level of energy after your run. On longer runs, sometimes a nap after you shower and stuff is needed. After the energy level comes the muscle soreness. That's what more people think of when thinking about recovery. Are you sore the next day? Can you walk? Can you go back out and run again? I can go out and run up to ten miles without having to really even think about soreness. But this time, I cannot recover the energy level.
This goes beyond the immediate need for a nap. For me, it has been maybe four days and I am still exhausted. It goes beyond that too. I have been super tired for a few weeks now. The last time I felt like this was a year ago when I was training for Hood To Coast, a relay race running in legs from Mt Hood to Seaside in Oregon. In training for that, I had one run where I did 13.1 miles and thought I was going to die. Not as in a whiny sort of way where you are just not fit enough to complete a run without really sucking wind, but I was afraid I might not make it home. I was literally hallucinating on that run. When I could not recover, I called my oncologist who ran some blood test to find out that I was almost two liters low on red blood. Understandably, that was my worst run ever.
Feeling the same or similar now, I called oncology today. When I went in a couple weeks ago, I mentioned how tired I have been lately. The CBC (Complete Blood Count) showed everything as fairly normal for my levels, though. So I went ahead with the chemo dose as that gets me one step closer to being done with everything. Doctor Oncologist told me to keep an eye on it though and see if we need to look at something else as to the cause of the fatigue. So I called. Usually, it takes me about a week to overcome the normal fatigue from a round of treatment. The last round was unusually difficult on me, and this round is not seeming to be any easier.
I do not know what it could be, but it has me a bit worried. What if- You know?
With the call to oncology, I am waiting for the call back to see what the doctor wants to do. I want to run tests and try to rule everything out or find something so it can be addressed and fixed. Maybe that is part of the problem. Insurance got cancelled, and we cannot pay for more tests or treatment. It worries me.
I keep saying I am just old. Is that it? Is this what being old is like? Because this sucks.
Tuesday, May 28, 2013
I am the gatekeeper to my own destiny
I have a friend. Surprising? I know. But this friend has MS. And while it is not cancer, we have dealt with many of the same issues including infusion room treatments, fatigue, aches and pains. Earlier she posted that it took her a number of years to attend a conference about MS, "because I couldn't look others in the eye who also have MS."
To borrow some words from Hank, it hit me like a 50's Packard driving through my chest. I have felt that. I think I have said on here before that I felt like my cancer was a social disease. Like others might treat me like I must have done something to deserve it. I was ashamed of my cancer and did not want to talk to others about it.
From Fight Club, the book, I found a new level of meaning in this quote from Tyler/Jack, "My fear is that people will see my [cancer] and I'll start to die in their minds. The cancer I don't have is everywhere now." Of course, I too feared that I would be a symbol of death and decay in people's eyes. But then beyond that, I realized that paralyzing fear was as bad as my cancer. It chancred me, spread rampant throughout and threatened to consume me. It was my non-existant cancer. The one I created and set loose within to destroy me.
I do not know how to help people understand that other than by example. Hopefully, in seeing that someone else has "self infected," as it were, they can see it and be liberated from the same folly. I hope so. I hope I can help others understand that they don't have to live in the mental state of anguish just because of some stupid physical malady. We can learn a lot from the wisdom of other brilliant men.
“Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” (Groucho Marx)
Maybe we eat it tomorrow. But maybe not. Most likely not. So today, "I am the gatekeeper to my own destiny and I will have my glory day in the hot sun." (Nacho Libre)
...Wow. That's a weird bunch of people to string together. My friend "M", Henry Rollins, Chuck Palahniuk, Groucho Marx, and Nacho. I should go to bed before this gets worse. I will have to re-read this tomorrow and probably make drastic edits. And so, thus ends the late night ramblings of one who should be drawing instead of stringing improbable people together.
Good night, and good luck. (...dang it!)
To borrow some words from Hank, it hit me like a 50's Packard driving through my chest. I have felt that. I think I have said on here before that I felt like my cancer was a social disease. Like others might treat me like I must have done something to deserve it. I was ashamed of my cancer and did not want to talk to others about it.
From Fight Club, the book, I found a new level of meaning in this quote from Tyler/Jack, "My fear is that people will see my [cancer] and I'll start to die in their minds. The cancer I don't have is everywhere now." Of course, I too feared that I would be a symbol of death and decay in people's eyes. But then beyond that, I realized that paralyzing fear was as bad as my cancer. It chancred me, spread rampant throughout and threatened to consume me. It was my non-existant cancer. The one I created and set loose within to destroy me.
I do not know how to help people understand that other than by example. Hopefully, in seeing that someone else has "self infected," as it were, they can see it and be liberated from the same folly. I hope so. I hope I can help others understand that they don't have to live in the mental state of anguish just because of some stupid physical malady. We can learn a lot from the wisdom of other brilliant men.
“Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” (Groucho Marx)
Maybe we eat it tomorrow. But maybe not. Most likely not. So today, "I am the gatekeeper to my own destiny and I will have my glory day in the hot sun." (Nacho Libre)
...Wow. That's a weird bunch of people to string together. My friend "M", Henry Rollins, Chuck Palahniuk, Groucho Marx, and Nacho. I should go to bed before this gets worse. I will have to re-read this tomorrow and probably make drastic edits. And so, thus ends the late night ramblings of one who should be drawing instead of stringing improbable people together.
Good night, and good luck. (...dang it!)
Tuesday, May 14, 2013
Push a Little Longer
A letter to a TNT teammate, Lisa. She asked me how to keep energy up to run after chemo and radiation. I responded:
Lisa,
I am actually glad you asked me about this, though I think it is a difficult thing to compare. I am struggling to respond. Sometimes I think we all understand another's unfortunate plight. Other times I think my struggles were unique to me and I am grateful I did not have to endure all that I have seen another go through without really knowing what it would have been like. Maybe it is easier for you to relate to me, than me to you, as I did not have radiation. But maybe there is just a lot of made up pretense, imagined in my mind. Hmm… Sorry, this is how my brain works. Sometimes over analytic and without reason or justification.
As you are aware, I am sure, I began training for my first half while in treatment. I continued the trend for my second half. And for this last season I was still on "maintenance chemo." I still am. I go in again on Thursday for another dose. With this, I do not get nausea like before but I still feel some fatigue. It is not as strong or lasting, but it is still there. And I still get chemo brain from it.
I do not think there is any "good" advice to give on how to keep up energy levels. Time, effort and patience are the only real answers though they are not what you want to hear. At least not what I want to hear. I had to learn that the first four miles are the hardest. They are for everyone, not just cancer patients. It takes me a couple miles to start feeling warmed up and after four is usually when I feel like I can actually do the distance. As I run, I have found myself chanting a number of different things along the way. Often in the beginning of a longer run I say, "The first four are the hardest. The first four are the hardest. The first four…" On longer sections or up hills, I have said "I am stronger than cancer. I am stronger than cancer." Sometimes I change that to say stronger than chemo.
People ask me how I keep going through it all. Family (I have four kids), work, school, chemo, and still get a run in a few times a week. Borrowing a line from the Grateful Dead, I often say I live on "Vitamin C and Cocaine." Though I have never done drugs, sometimes I feel like a crack junky for caffeine. My dependency on it drives me crazy. It used to be a lot worse. I could not get through a day without multiple energy drinks like Rockstar or Red Bull. If I sat down, I would pass out within minutes. The problem was I knew that even if I let myself take a nap, I would not wake feeling any more rested or with any more energy. I was just awake. In limbo. Like a zombie. Neither dead nor living, incapable of understanding which I was supposed to be.
I do not recommend that path. The Rockstar path is not good for you. But I figure if God saw fit to saddle me with cancer, he must put up with my figuring out how to make it through the day. Rockstars became my crutch. There are multiple problems with that and running, though I don't want to get off on a biology/physiology tangent.
Perhaps the best advice I can give is mental. Push a little longer. Run when you can, walk when you have to, and keep putting one foot forward when you think you can't.
As a very competitive person, and having a trace of my former rugby player ego, I hated seeing my performance as failure. It took me a long time to learn and accept that the race is not about time. It is about crossing the finish line. It is still difficult but I know it is doable.
Accept that races will be hard. That they will be slower than you want. Accept that your training runs may be better than your race run. Learn to enjoy each run for it's own unique day. During this last season, a month before event weekend for me, I had a trial run. I did my 13+ miles starting from OMSI out to Sellwood and back. I averaged about a 9:47 mile. That is the fastest I have ever been. I LOVED it! My race weekend was very different. Were it not for Coach Kevin walking with me for a couple miles, I would not have likely finished. I had to grab onto him to keep from falling. I was not good and I have not recovered. We will see what oncology says in a couple days.
While I am bummed about my race performance, I am okay with it. I accept each run is it's own beast. Post chemo and worse, post radiation, our bodies may ever more piss us off never finding consistency. Never finding predictability except the unpredictability. It's frustrating, but it's better than not running. And I think that becomes the metaphor for life. Run when you can, walk when you have to. Put one foot forward. Push just a little longer.
…And maybe have a little caffeine to help you get started. ;)
-Ryan
Lisa,
I am actually glad you asked me about this, though I think it is a difficult thing to compare. I am struggling to respond. Sometimes I think we all understand another's unfortunate plight. Other times I think my struggles were unique to me and I am grateful I did not have to endure all that I have seen another go through without really knowing what it would have been like. Maybe it is easier for you to relate to me, than me to you, as I did not have radiation. But maybe there is just a lot of made up pretense, imagined in my mind. Hmm… Sorry, this is how my brain works. Sometimes over analytic and without reason or justification.
As you are aware, I am sure, I began training for my first half while in treatment. I continued the trend for my second half. And for this last season I was still on "maintenance chemo." I still am. I go in again on Thursday for another dose. With this, I do not get nausea like before but I still feel some fatigue. It is not as strong or lasting, but it is still there. And I still get chemo brain from it.
I do not think there is any "good" advice to give on how to keep up energy levels. Time, effort and patience are the only real answers though they are not what you want to hear. At least not what I want to hear. I had to learn that the first four miles are the hardest. They are for everyone, not just cancer patients. It takes me a couple miles to start feeling warmed up and after four is usually when I feel like I can actually do the distance. As I run, I have found myself chanting a number of different things along the way. Often in the beginning of a longer run I say, "The first four are the hardest. The first four are the hardest. The first four…" On longer sections or up hills, I have said "I am stronger than cancer. I am stronger than cancer." Sometimes I change that to say stronger than chemo.
People ask me how I keep going through it all. Family (I have four kids), work, school, chemo, and still get a run in a few times a week. Borrowing a line from the Grateful Dead, I often say I live on "Vitamin C and Cocaine." Though I have never done drugs, sometimes I feel like a crack junky for caffeine. My dependency on it drives me crazy. It used to be a lot worse. I could not get through a day without multiple energy drinks like Rockstar or Red Bull. If I sat down, I would pass out within minutes. The problem was I knew that even if I let myself take a nap, I would not wake feeling any more rested or with any more energy. I was just awake. In limbo. Like a zombie. Neither dead nor living, incapable of understanding which I was supposed to be.
I do not recommend that path. The Rockstar path is not good for you. But I figure if God saw fit to saddle me with cancer, he must put up with my figuring out how to make it through the day. Rockstars became my crutch. There are multiple problems with that and running, though I don't want to get off on a biology/physiology tangent.
Perhaps the best advice I can give is mental. Push a little longer. Run when you can, walk when you have to, and keep putting one foot forward when you think you can't.
As a very competitive person, and having a trace of my former rugby player ego, I hated seeing my performance as failure. It took me a long time to learn and accept that the race is not about time. It is about crossing the finish line. It is still difficult but I know it is doable.
Accept that races will be hard. That they will be slower than you want. Accept that your training runs may be better than your race run. Learn to enjoy each run for it's own unique day. During this last season, a month before event weekend for me, I had a trial run. I did my 13+ miles starting from OMSI out to Sellwood and back. I averaged about a 9:47 mile. That is the fastest I have ever been. I LOVED it! My race weekend was very different. Were it not for Coach Kevin walking with me for a couple miles, I would not have likely finished. I had to grab onto him to keep from falling. I was not good and I have not recovered. We will see what oncology says in a couple days.
While I am bummed about my race performance, I am okay with it. I accept each run is it's own beast. Post chemo and worse, post radiation, our bodies may ever more piss us off never finding consistency. Never finding predictability except the unpredictability. It's frustrating, but it's better than not running. And I think that becomes the metaphor for life. Run when you can, walk when you have to. Put one foot forward. Push just a little longer.
…And maybe have a little caffeine to help you get started. ;)
-Ryan
Monday, December 17, 2012
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.
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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