It's a curious thing, the motivation or inclination to express oneself to others through writing. I felt it quite distinctly and regularly during the time that I was in treatment for cancer. But since returning to "normal" life I don't seem to have the same desire very often. I think there's a part of me that just doesn't believe my life is all that interesting. But that's not really the issue, because when I was writing before I was doing it for me, not for the audience. Probably it has to do with experiencing pain and suffering and needing to do something to manage that experience. And since I haven't really been dealing with anything remotely as challenging as chemotherapy I haven't needed to "deal".
I did go through something traumatic though, earlier this year. Around late May I started having trouble with my breath. I couldn't get a full, deep breath without really trying and my breathing in general began to feel labored. Then I started getting light headed when I would bend down and I noticed that I wasn't breathing normally while asleep. These symptoms were very similar to what I experienced prior to being diagnosed with cancer four years ago, so the alarm bells were definitely ringing - I was scared.
I made an appointment to see my primary care doctor and they gave me some breathing tests. I was only able to expel something like 60% of normal lung volume, so something was definitely going on. I got a chest x-ray and it was negative, meaning there wasn't anything wrong showing up on the x-ray. But I was still having these symptoms and I was still very concerned, so I made an appointment with my oncologist.
The cancer doc decided to order a CT scan to be safe. So I had that scan and it also came back negative. She told me, I'm not sure what's going on with you but it's not cancer. So obviously this was the news I wanted to hear. But I still didn't have any answers.
During the time I was going through these tests and waiting for the results my wife Denise was in the final weeks of her pregnancy with our first child. I don't think I can express how upsetting it was to contemplate dealing with a recurrence of cancer during the first days and weeks of our daughter's life. I found out the news, that I didn't have cancer again, just a couple of weeks or so before Amira was born. It was an incredible weight off my shoulders. I truly was worried that I might be dying. It was terrifying.
So, having thought all those dark thoughts about not being able to watch my daughter grow up and what sort of Breaking Bad shit I could pull off so my family would be ok when I was gone, I came out the other side. After Amira was born I waited a few weeks and then I reached out to my doctor again. I was still having breathing issues, not as severely as I had at first, but I knew there was a real problem and I still had no idea what it was. I asked them to refer me to a lung specialist and they had me come in for one more visit before they did that. They confirmed that it wasn't an issue with my heart and then referred me to a pulmonologist.
I'm still waiting to get in to see the pulmonary doc, so I don't have any news beyond that. My suspicion is that my issue is related to allergies and I have been experiencing some sort of allergy induced asthma or something like that. It's odd that I would develop that at this point in my life, but who knows, maybe that's normal, or maybe all the chemo I had has changed my lungs, or who knows what. So, but I'll see someone at the end of the month, and maybe they'll be able to tell me what's going on.
At this point the symptoms have gotten much better, and I don't notice them as frequently. I can still ride my bike and do things outside and basically enjoy myself, so I'm not particularly concerned any longer. But there you have it. This is the reality of being a cancer survivor. Every time I have any weird health issue the rest of my life I'll be scared that it's cancer.
On a much brighter note our daughter is 11 weeks old today. You have to count your baby's age in weeks to give it significance. Saying that she's zero just doesn't have the same impact. And every week truly is significant when they're this age. Watching her grow and change and drool is fascinating and heart-exploding. I keep looking at her wondering who she's going to be. It's going to be fun to find out.
Thursday, September 15, 2016
Come Down to Earth
Note: I wrote the following post I think sometime around late November, 2015. I had waited to publish it because we hadn't yet announced Denise's pregnancy to all of our friends and family and I didn't want to share the news this way. But here it is, the experience I wanted to share during that time.
Hello there. It's been a long while since I posted to this blog. There have been some significant developments in my life that I'd like to share with you.
This year has been a great one for me. I completed chemotherapy last December. And so as the months have progressed I have been able to experience a gradual process of cleansing, for lack of a better term. I received chemo over a period of two and a half years. During the final half of that time the doses were small, but it was chemo nonetheless. And during that entire time I was periodically taking steroids as a part of my treatment. I was tired a lot. I felt sluggish. I gained some weight due to the steroids. And some of the chemo was stored inside the cells in my body. And there is some in there still.
So, as I have spent more time without adding chemo in, I've had a chance to clear some of the old chemo out. This isn't a very scientific description, perhaps. But it matches my experience. For example, on days when I exercise strenuously - say, go for a long mountain bike ride - I often will feel some slight effects, similar to what I used to feel after a chemotherapy treatment, for several days afterward. This experience has diminished over time this year as I have continued to be active, to burn some of the fat I had stored up over the past few years.
It's been a great feeling actually, to know that I'm clearing out some of the nasty stuff that is still inside me. I had assumed that it would take some time for my body to fully recover from treatment. I don't know how long it will take for me to be 100% clear of it. But things are going well.
I spent a good portion of the autumn taking trips to go mountain biking. I think I drove west out I-70 to Grand Junction and beyond at least four or five times during a two month period. It was awesome. I am really loving mountain biking as a way to regain some fitness and enjoy the outdoors.
The last trip I took involved an entire week off of work. I drove out to Grand Junction and picked up my friend Lydia and we headed west to the Zion area in Utah to do some biking. Then we made our way south to Sedona, and then on to Tucson to visit our friends Tony and Anna who had a month old baby at the time. Little baby Lena is beautiful and we had a great time visiting them.
If you have followed my story with cancer from the beginning you may remember that my doctors told me I would not be able to have children of my own. That was a tough pill to swallow at the time, and it's something I have thought about from time to time since. Denise and I have discussed the idea of someday adopting children. And as I spent time with my friends and their new baby I experienced a series of emotions. I was touched by the love they felt for their daughter, and at the same time thought that perhaps I was happy that I would never have to deal with the challenge of taking care of a newborn.
Lydia and I made our way back to Grand Junction at the end of the week and I drove home to Denver alone. Before I left GJ, Denise texted me and told me she had something to share with me when I got home, something too crazy to tell me over the phone. For some reason I had the thought as I drove east on I-70 that she might be pregnant. But I knew that couldn't be possible. So I tried to imagine other things that her news must be. The problem was that I couldn't think of one other thing she wouldn't tell me over the phone. When I got home Denise confirmed my suspicion. We embraced each other after my long trip. I could feel her heart beating rapidly and I knew right away what she was going to tell me. She broke the news. And I'm still coming back down to Earth.
Little did I know, when I was visiting Tony and Anna and their baby, Denise was sitting at home with the knowledge that she was pregnant. She wanted to wait to share the news with me in person. So I was thinking I would never have the experience that Tony and Anna were having. I had had a long time to absorb the news that I wouldn't have kids of my own. But that trip somehow made it more real, seeing two people I am close to be so full of love for their child.
So when Denise confirmed what I thought might be true, I was truly blown away. My doctor had been wrong. We were both completely caught off guard, blindsided by the news.
I am going to be a father. I cannot tell you how happy I am that this has come to pass. I had written it off, given it up, and was in the long process of trying to move on. Who knows, I may never have truly been ok with that loss. I was hoping that if we adopted a child someday that I would love that child and I would know then that it was ok that I didn't have one of my own. I just didn't know yet, I guess. And all of these questions and regrets and emotions were something that just sat there in me, something I didn't know how to approach.
There's a point at which I think most people realize that they can't go back. That there are opportunities that have passed them by. When you're young you don't feel that way. Growing up I always had this feeling deep down that I could have any kind of life. It may not have been true, but I felt that way. So for me, if I'm being honest, my diagnosis was the point at which my life changed irrevocably and there was no doubt in my mind that I could never go back. Despite that, I have tried over the past few years to "fully recover". To get back to where I was before. But the thing is that will never happen. I will never be 29 years old again. I will never be the same person I was before I had cancer. And that's ok! It's a good thing even.
So, but that emotion, it's like loss I think, that knowledge that you can't go back and do it again. That longing. That's something I have felt, sometimes rather heavily, since I learned I had cancer three and a half years ago. But this news that Denise is pregnant, that we are going to have a child together, that I'm going to be someone's dad...that news has wiped clean that layer of pain and loss and missing out that had built up over time. It has changed my life yet again.
Before I wrote this down I was reading through some of the comments that have been posted by people who have read this blog over the past few years. Comments expressing love, and support, and joy, and encouragement. And it reminded me how fortunate I've been to be supported by all of you. When I was sick, your support touched my heart and made me want to live so that I could show the same kind of love in return, and to others. As I have recovered from being sick your encouragement has given me reassurance that I am ok, that I am going to be ok. I want each of you to know this. I want each of you to feel the love you have shown me reflected back in appreciation. Thank you.
Love,
Chris
Hello there. It's been a long while since I posted to this blog. There have been some significant developments in my life that I'd like to share with you.
This year has been a great one for me. I completed chemotherapy last December. And so as the months have progressed I have been able to experience a gradual process of cleansing, for lack of a better term. I received chemo over a period of two and a half years. During the final half of that time the doses were small, but it was chemo nonetheless. And during that entire time I was periodically taking steroids as a part of my treatment. I was tired a lot. I felt sluggish. I gained some weight due to the steroids. And some of the chemo was stored inside the cells in my body. And there is some in there still.
So, as I have spent more time without adding chemo in, I've had a chance to clear some of the old chemo out. This isn't a very scientific description, perhaps. But it matches my experience. For example, on days when I exercise strenuously - say, go for a long mountain bike ride - I often will feel some slight effects, similar to what I used to feel after a chemotherapy treatment, for several days afterward. This experience has diminished over time this year as I have continued to be active, to burn some of the fat I had stored up over the past few years.
It's been a great feeling actually, to know that I'm clearing out some of the nasty stuff that is still inside me. I had assumed that it would take some time for my body to fully recover from treatment. I don't know how long it will take for me to be 100% clear of it. But things are going well.
I spent a good portion of the autumn taking trips to go mountain biking. I think I drove west out I-70 to Grand Junction and beyond at least four or five times during a two month period. It was awesome. I am really loving mountain biking as a way to regain some fitness and enjoy the outdoors.
The last trip I took involved an entire week off of work. I drove out to Grand Junction and picked up my friend Lydia and we headed west to the Zion area in Utah to do some biking. Then we made our way south to Sedona, and then on to Tucson to visit our friends Tony and Anna who had a month old baby at the time. Little baby Lena is beautiful and we had a great time visiting them.
If you have followed my story with cancer from the beginning you may remember that my doctors told me I would not be able to have children of my own. That was a tough pill to swallow at the time, and it's something I have thought about from time to time since. Denise and I have discussed the idea of someday adopting children. And as I spent time with my friends and their new baby I experienced a series of emotions. I was touched by the love they felt for their daughter, and at the same time thought that perhaps I was happy that I would never have to deal with the challenge of taking care of a newborn.
Lydia and I made our way back to Grand Junction at the end of the week and I drove home to Denver alone. Before I left GJ, Denise texted me and told me she had something to share with me when I got home, something too crazy to tell me over the phone. For some reason I had the thought as I drove east on I-70 that she might be pregnant. But I knew that couldn't be possible. So I tried to imagine other things that her news must be. The problem was that I couldn't think of one other thing she wouldn't tell me over the phone. When I got home Denise confirmed my suspicion. We embraced each other after my long trip. I could feel her heart beating rapidly and I knew right away what she was going to tell me. She broke the news. And I'm still coming back down to Earth.
Little did I know, when I was visiting Tony and Anna and their baby, Denise was sitting at home with the knowledge that she was pregnant. She wanted to wait to share the news with me in person. So I was thinking I would never have the experience that Tony and Anna were having. I had had a long time to absorb the news that I wouldn't have kids of my own. But that trip somehow made it more real, seeing two people I am close to be so full of love for their child.
So when Denise confirmed what I thought might be true, I was truly blown away. My doctor had been wrong. We were both completely caught off guard, blindsided by the news.
I am going to be a father. I cannot tell you how happy I am that this has come to pass. I had written it off, given it up, and was in the long process of trying to move on. Who knows, I may never have truly been ok with that loss. I was hoping that if we adopted a child someday that I would love that child and I would know then that it was ok that I didn't have one of my own. I just didn't know yet, I guess. And all of these questions and regrets and emotions were something that just sat there in me, something I didn't know how to approach.
There's a point at which I think most people realize that they can't go back. That there are opportunities that have passed them by. When you're young you don't feel that way. Growing up I always had this feeling deep down that I could have any kind of life. It may not have been true, but I felt that way. So for me, if I'm being honest, my diagnosis was the point at which my life changed irrevocably and there was no doubt in my mind that I could never go back. Despite that, I have tried over the past few years to "fully recover". To get back to where I was before. But the thing is that will never happen. I will never be 29 years old again. I will never be the same person I was before I had cancer. And that's ok! It's a good thing even.
So, but that emotion, it's like loss I think, that knowledge that you can't go back and do it again. That longing. That's something I have felt, sometimes rather heavily, since I learned I had cancer three and a half years ago. But this news that Denise is pregnant, that we are going to have a child together, that I'm going to be someone's dad...that news has wiped clean that layer of pain and loss and missing out that had built up over time. It has changed my life yet again.
Before I wrote this down I was reading through some of the comments that have been posted by people who have read this blog over the past few years. Comments expressing love, and support, and joy, and encouragement. And it reminded me how fortunate I've been to be supported by all of you. When I was sick, your support touched my heart and made me want to live so that I could show the same kind of love in return, and to others. As I have recovered from being sick your encouragement has given me reassurance that I am ok, that I am going to be ok. I want each of you to know this. I want each of you to feel the love you have shown me reflected back in appreciation. Thank you.
Love,
Chris
Monday, December 8, 2014
Treatment Coming To An End
Dear Friends,
A very long journey is coming to an end. Two and a half years ago I discovered abruptly that I had stage 4 non-Hodgkins acute lymphoblastic t-cell lymphoma. From that time forward I have been undergoing chemotherapy treatment. After six months of induction (high dose) chemo I began a two year maintenance regimen that ends today, December 8, 2014.
I will have some tests here in the near future that will hopefully confirm me as being officially cancer free. I'll update you when I get those results. I am optimistic as every test I've had since I began treatment has been a good one.
I want to share a little bit of the psychological experience I've had during the final months of this long maintenance period of my treatment. This has been as challenging for me as the earlier chemo, but in different ways. I am physically healthier in general now. I can do most of the things that I want or need to do in my daily life. The challenge has not been so much a physical one, but a mental one. Slowly, gradually my strength and resolve have dwindled. Undoubtedly I could take more, but I don't really know how much more.
Thankfully that isn't a question. I am finally finished. The thing that has surprised me most is how trapped I have felt by this process. That feeling has extended to every area of my life causing me to want to escape all of it. I think it's probably an instincual reaction to a prolonged experience of something unpleasant - to want to run away from it. But I have stuck through it.
My biggest ancitipcation in completing treatment is a return to me. And the process of discovering who and what that is now. This has been the hardest thing I've ever done. The final few months of this time have felt like the last mile of a marathon (or so I imagine). But I have made it through and now I can finally repair and move on. I am free.
I am incredibly fortunate. Other, more worthy people have not survived what I've just gone through. For me this has served to solidify my concept of life as an opportunity. A constant opportunity to experience...anything, and everything. Whatever you want. It's an amazing concept, I think. Take advantage of it. Choose to follow your passions, to experience the things that will bring you fulfillment. Make your way through life in a way that makes you happy to be alive. If you find yourself in a dark place, first embrace it. That's an experience too, and it has as much value as any other. And then figure out what you want and head that direction.
Sorry for the cheerleading armchair philosophy. I can't help it. Everything can be gone in a second. Do not waste your time. No experience is a bad one.
I want to thank you all for your support and love throughout. I will not ever be able to express the entirety of the gratitude I feel toward all of you. You have carried me through, given me reason and inspiration to survive. I love you all.
Next week Denise and I will travel to Chile to spend a couple of weeks and the holidays with our good friends Lacy and Felipe. I am extremely excited to see a new place, meet new people, and share new adventures with my wife and our friends. It's a chance to step outside our normal lives, maybe even out of our comfort zones a bit, to celebrate, explore, clear away some of the haze and cobwebs I've accumulated over the past few years. I hear the smog in Santiago is pretty bad, but there's no way it's as dense as the fog has been inside my head.
When we return I am excited to dive right into the next stage of my life. Who knows what new experiences it may bring. I look forward to sharing many of them with you.
Love,
Chris
A very long journey is coming to an end. Two and a half years ago I discovered abruptly that I had stage 4 non-Hodgkins acute lymphoblastic t-cell lymphoma. From that time forward I have been undergoing chemotherapy treatment. After six months of induction (high dose) chemo I began a two year maintenance regimen that ends today, December 8, 2014.
I will have some tests here in the near future that will hopefully confirm me as being officially cancer free. I'll update you when I get those results. I am optimistic as every test I've had since I began treatment has been a good one.
I want to share a little bit of the psychological experience I've had during the final months of this long maintenance period of my treatment. This has been as challenging for me as the earlier chemo, but in different ways. I am physically healthier in general now. I can do most of the things that I want or need to do in my daily life. The challenge has not been so much a physical one, but a mental one. Slowly, gradually my strength and resolve have dwindled. Undoubtedly I could take more, but I don't really know how much more.
Thankfully that isn't a question. I am finally finished. The thing that has surprised me most is how trapped I have felt by this process. That feeling has extended to every area of my life causing me to want to escape all of it. I think it's probably an instincual reaction to a prolonged experience of something unpleasant - to want to run away from it. But I have stuck through it.
My biggest ancitipcation in completing treatment is a return to me. And the process of discovering who and what that is now. This has been the hardest thing I've ever done. The final few months of this time have felt like the last mile of a marathon (or so I imagine). But I have made it through and now I can finally repair and move on. I am free.
I am incredibly fortunate. Other, more worthy people have not survived what I've just gone through. For me this has served to solidify my concept of life as an opportunity. A constant opportunity to experience...anything, and everything. Whatever you want. It's an amazing concept, I think. Take advantage of it. Choose to follow your passions, to experience the things that will bring you fulfillment. Make your way through life in a way that makes you happy to be alive. If you find yourself in a dark place, first embrace it. That's an experience too, and it has as much value as any other. And then figure out what you want and head that direction.
Sorry for the cheerleading armchair philosophy. I can't help it. Everything can be gone in a second. Do not waste your time. No experience is a bad one.
I want to thank you all for your support and love throughout. I will not ever be able to express the entirety of the gratitude I feel toward all of you. You have carried me through, given me reason and inspiration to survive. I love you all.
Next week Denise and I will travel to Chile to spend a couple of weeks and the holidays with our good friends Lacy and Felipe. I am extremely excited to see a new place, meet new people, and share new adventures with my wife and our friends. It's a chance to step outside our normal lives, maybe even out of our comfort zones a bit, to celebrate, explore, clear away some of the haze and cobwebs I've accumulated over the past few years. I hear the smog in Santiago is pretty bad, but there's no way it's as dense as the fog has been inside my head.
When we return I am excited to dive right into the next stage of my life. Who knows what new experiences it may bring. I look forward to sharing many of them with you.
Love,
Chris
Saturday, June 28, 2014
Happy Life
Well, here we are, it has officially been two years since I was diagnosed with cancer. Above all, of course, I am just glad to be alive. Alive and well. Though that feels like an odd thing to say at the ripe age of 31.
Two years ago, on June 21, I was admitted to St. Anthony's Hospital in Westminster, CO. I knew I was sick, I knew I had what looked like a cancerous mass in my chest, but I still had no idea what I was in for. No idea that I would not return to my job for the next six and a half months, that I would never return home to my apartment (save one brief moment to gather a few remaining items), that my life as I had known it was absolutely over.
I don't dwell on it as much these days. What I've been through. It's amazing how quickly we can move on from something so enormous and challenging. It's almost as if it never happened. Except I am still taking maintenance chemotherapy. I am still dealing with the side effects. It has been two years, and I don't really know how it feels to not have chemo drugs in my body anymore.
But even at that I don't think about what I went through very often. It's not very fun to contemplate. It's scary, and it makes me feel like my life is more fragile than I want it to be. Thinking about the six months I spent in and out of the hospital, on narcotics every day, sick and lonely and grumpy and frustrated, thinking about that just makes me feel like I'm living on borrowed time. And that is one of the most unsettling and uncomfortable things I've ever experienced.
It's fascinating at the same time, to me anyway. That I came so close to losing my life, that I survived, that I have come so far, and that my life is largely back to normal. I hoped for this to happen, and it has, and I feel very fortunate. Humbled and grateful to be here.
I'm also tired. I am so very tired of chemo and I am so ready to be finished with it. I know it sounds terrible, and it is, but it's no different from any challenging thing. You face it and you go through it and you do the best you can do with what you're facing. Just like anything else, anything you have faced. It's just that it's lasting so freaking long! Two years. Good grief.
I don't think I even understand all the ways this experience has affected me. Changed how I think and how I see myself, my place in the world, the world around me. It's has made me both more appreciative of certain things and more detached from others. It has opened me up in some ways and closed me off in others. It has changed me, for certain, and for good, and I believe for the better. I like to think that anyway. I think I like myself more - and I probably like you more - for having gone through this. And I think that makes me a better person, maybe happier, but definitely just more ok.
I really don't mind talking about it with people, sharing my story. It's not fun to dwell on, but telling the story isn't the same thing. I think it's given me a way to express vulnerability that I didn't have before, and that makes me a more relatable person. We all have it, it's just finding a way to access it that can be difficult for some; it was for me. And it's taken some of the fear out of life while adding in other fear. Sometimes when I think about things in that way it's hard to believe how balanced everything is. You know what I mean?
As many of you know I am getting married this fall. Just three months from now Denise and I will tie the knot and I couldn't be happier or more excited. When I was lying in a hospital bed dreaming of having my life back this was the thing I dreamed about and wished for the most. So I think it will feel like a culmination and a celebration, having overcome and made it so far. From the darkest and most difficult moments of my life to the most joyful and happiest. Pretty cool huh.
Happy summer to you all, happy life. Try to remember, if you're worrying about it, well, just enjoy yourself instead.
Love,
Chris
Two years ago, on June 21, I was admitted to St. Anthony's Hospital in Westminster, CO. I knew I was sick, I knew I had what looked like a cancerous mass in my chest, but I still had no idea what I was in for. No idea that I would not return to my job for the next six and a half months, that I would never return home to my apartment (save one brief moment to gather a few remaining items), that my life as I had known it was absolutely over.
I don't dwell on it as much these days. What I've been through. It's amazing how quickly we can move on from something so enormous and challenging. It's almost as if it never happened. Except I am still taking maintenance chemotherapy. I am still dealing with the side effects. It has been two years, and I don't really know how it feels to not have chemo drugs in my body anymore.
But even at that I don't think about what I went through very often. It's not very fun to contemplate. It's scary, and it makes me feel like my life is more fragile than I want it to be. Thinking about the six months I spent in and out of the hospital, on narcotics every day, sick and lonely and grumpy and frustrated, thinking about that just makes me feel like I'm living on borrowed time. And that is one of the most unsettling and uncomfortable things I've ever experienced.
It's fascinating at the same time, to me anyway. That I came so close to losing my life, that I survived, that I have come so far, and that my life is largely back to normal. I hoped for this to happen, and it has, and I feel very fortunate. Humbled and grateful to be here.
I'm also tired. I am so very tired of chemo and I am so ready to be finished with it. I know it sounds terrible, and it is, but it's no different from any challenging thing. You face it and you go through it and you do the best you can do with what you're facing. Just like anything else, anything you have faced. It's just that it's lasting so freaking long! Two years. Good grief.
I don't think I even understand all the ways this experience has affected me. Changed how I think and how I see myself, my place in the world, the world around me. It's has made me both more appreciative of certain things and more detached from others. It has opened me up in some ways and closed me off in others. It has changed me, for certain, and for good, and I believe for the better. I like to think that anyway. I think I like myself more - and I probably like you more - for having gone through this. And I think that makes me a better person, maybe happier, but definitely just more ok.
I really don't mind talking about it with people, sharing my story. It's not fun to dwell on, but telling the story isn't the same thing. I think it's given me a way to express vulnerability that I didn't have before, and that makes me a more relatable person. We all have it, it's just finding a way to access it that can be difficult for some; it was for me. And it's taken some of the fear out of life while adding in other fear. Sometimes when I think about things in that way it's hard to believe how balanced everything is. You know what I mean?
As many of you know I am getting married this fall. Just three months from now Denise and I will tie the knot and I couldn't be happier or more excited. When I was lying in a hospital bed dreaming of having my life back this was the thing I dreamed about and wished for the most. So I think it will feel like a culmination and a celebration, having overcome and made it so far. From the darkest and most difficult moments of my life to the most joyful and happiest. Pretty cool huh.
Happy summer to you all, happy life. Try to remember, if you're worrying about it, well, just enjoy yourself instead.
Love,
Chris
Sunday, March 30, 2014
Please Enjoy Your Stay
It's been a while since I've written anything so I wanted to check in. See how the rest of you are doing. Things are moving along here for me treatment-wise, life-wise. I have nine months left - not that I'm counting or anything. And then I will be done, or so the expectation goes. And that prospect is a little daunting, a little terrifying, and a whole lot amazing.
As I've explained before, when I was diagnosed my life was wiped away and I was left to re-create it. Maybe not from scratch. But a whole lot that had been there before was suddenly gone. And I've been able to enjoy the opportunity to replace it, perhaps more selectively than the manner in which it was previously formed. But that reconstructive process has always existed within the context of cancer treatment. In other words, I don't yet know who I am without chemotherapy.
To be sure I absolutely cannot wait to find out. I want to know just what my body will feel like, how my mind will function, how my heart will beat, both literally and figuratively, once I am free of chemotherapy. I cannot wait.
But I certainly don't mean to mislead you. I am thoroughly enjoying my time here and now. And the gratitude I feel for the very fact that I am living continues to continue. We just don't know what we have until we have it taken away, a simple fact of experience.
I found out recently that someone else I know has non-Hodgkin's lymphoma. I hope that their treatment is swifter and easier and more livable than mine has been. And I hope that they can experience the same degree of love and support from those around them that I have had. I wish them health, and I send my love to them.
So, back to you. How is your life? What things have you learned recently that have helped you to navigate your way to enjoying yourself? Lately I've been thinking that the key in life isn't to try to be happy. Happiness is fleeting, or at least isn't a permanent state for anyone. Happiness happens. But so do other emotional states. The key for me, as I've come to think of it, is to enjoy myself. That may sound a bit broad or vague. It helps if you understand what it is that you enjoy. That's the tougher part. But my point is that emotional states will change. Circumstances will change. All things will change. So seeking a particular subset of emotional states while excluding others as unworthy, well that's a futile endeavor. Perhaps even a recipe for unhappiness.
Anyway, enjoy myself, that's my goal.
Are you doing that?
Do you know what you enjoy? Do you find yourself making decisions that prevent you from doing things that you enjoy because you have decided to prioritize other values above enjoyment?
That's entirely up to you. I'm just talking about my own prioritization of things.
We all get to figure that one out for ourselves.
I've been doing some traveling for work recently and it has reignited in me a desire to explore. That's one thing I enjoy, and it can take so many forms. A new experience, that's the key element of exploration.
Here's to spring time. To new things, growing and living things. I hope you enjoy it all.
Love,
Chris
As I've explained before, when I was diagnosed my life was wiped away and I was left to re-create it. Maybe not from scratch. But a whole lot that had been there before was suddenly gone. And I've been able to enjoy the opportunity to replace it, perhaps more selectively than the manner in which it was previously formed. But that reconstructive process has always existed within the context of cancer treatment. In other words, I don't yet know who I am without chemotherapy.
To be sure I absolutely cannot wait to find out. I want to know just what my body will feel like, how my mind will function, how my heart will beat, both literally and figuratively, once I am free of chemotherapy. I cannot wait.
But I certainly don't mean to mislead you. I am thoroughly enjoying my time here and now. And the gratitude I feel for the very fact that I am living continues to continue. We just don't know what we have until we have it taken away, a simple fact of experience.
I found out recently that someone else I know has non-Hodgkin's lymphoma. I hope that their treatment is swifter and easier and more livable than mine has been. And I hope that they can experience the same degree of love and support from those around them that I have had. I wish them health, and I send my love to them.
So, back to you. How is your life? What things have you learned recently that have helped you to navigate your way to enjoying yourself? Lately I've been thinking that the key in life isn't to try to be happy. Happiness is fleeting, or at least isn't a permanent state for anyone. Happiness happens. But so do other emotional states. The key for me, as I've come to think of it, is to enjoy myself. That may sound a bit broad or vague. It helps if you understand what it is that you enjoy. That's the tougher part. But my point is that emotional states will change. Circumstances will change. All things will change. So seeking a particular subset of emotional states while excluding others as unworthy, well that's a futile endeavor. Perhaps even a recipe for unhappiness.
Anyway, enjoy myself, that's my goal.
Are you doing that?
Do you know what you enjoy? Do you find yourself making decisions that prevent you from doing things that you enjoy because you have decided to prioritize other values above enjoyment?
That's entirely up to you. I'm just talking about my own prioritization of things.
We all get to figure that one out for ourselves.
I've been doing some traveling for work recently and it has reignited in me a desire to explore. That's one thing I enjoy, and it can take so many forms. A new experience, that's the key element of exploration.
Here's to spring time. To new things, growing and living things. I hope you enjoy it all.
Love,
Chris
Friday, January 24, 2014
Good News
This week I visited the clinic for my monthly chemo shot. I had been counting down the months until I was potentially supposed to endure another week of high dosage induction chemotherapy. I underwent six rounds of it initially when I was diagnosed in 2012, then another last April, followed by a month of weekly high-dose shots in May/June.
The initial treatment was horrible. But it was like a dream. I floated through it, suffering, but without any other obligations or responsibilities. I was free to immerse myself in that process and to focus on surviving it. The follow up last spring was harder in some ways. I was back to work. I had to take a week of my vacation time to sit in the hospital receiving continuous injections. I lost my hair again. Living a 'normal' day to day life while undergoing that kind of chemotherapy was really hard. I have the utmost respect for those who can go through that and manage to function in their lives.
That experience was something I was dreading the pending repetition of this year. So I was counting down the months until this coming April. As the time was getting closer I began to lose my resolve a bit. I think the hardest thing has been feeling like I'm better, like all the way better, and then having to take more chemo and feel bad again. Over and over, I recover, start to feel really good, and then I have to take more. And I think that process was taking its toll on me. So as I contemplated another week in the hospital, the plastic bed, the isolation, vulnerability, and fear that I've experienced lying in those rooms, I was having a harder and harder time wrapping my head around it. It was becoming more and more difficult to reconcile how I have been feeling - better and better - with the need to put so much poison in my body again. Hadn't it been long enough, hadn't I responded well enough to the treatment, wasn't I OK already?
With those thoughts in my head I sat in one of the examination rooms at the clinic on Monday waiting for my doctor to knock on the door. When we began our conversation after he stepped into the room I steeled myself, preparing to be let down. I expected to receive his official opinion that, "we want to give you as much as we possibly can." Instead he started talking about all the different research on my disease. The various treatment regimens that are used. He compared them to my own treatment, and to my surprise he started talking about the fact that some maintenance schedules don't involve any induction at all. Of course, he said, some of those other regimens involve more chemo up front. Adding some of the drugs I took this past spring into the mix during the initial induction phase. And then he mentioned the idea that more and more, for patients under 30 (ok, not me, I'm no longer under 30), or maybe 40 (ok crap that's still me) they are using the same treatments they use in children - basically what I've been doing all along is the same chemo they would use to treat a kid with my disease - because individuals that age have been determined to be able to withstand the higher doses.
At this point he had hinted in both directions and internally I was on the edge of my seat, though I tried not to let on. And then he finally said it. Based on how well I responded to the initial treatment, on how well I've done all along, on the fact that I never had a positive CSF (they never found cancer in my cerebral spinal fluid), he didn't think I needed to do another round of induction chemotherapy.
It took me a few seconds to absorb this news. As it started to sink in I almost began to cry. I had been so scared of going back to the hospital, of the disruption to my life, my ability to do my job, the subsequent loss of my hair, for the third time, the whole thing. An enormous weight began to lift from my entire body.
We talked some more and decided that I would continue with the basic maintenance regimen I've been on since November, 2012. I get a shot each month, and I take oral meds regularly. This would continue until December of this year, and then we would stop. This year, 2014, would be it.
I'm happy to be able to share with you that the end is officially in sight. I now know when I will be able to hit the ejection button and escape from the roller coaster up and down of chemo and recovery and chemo and recovery for good. Of course, I don't know the future. Nothing is a guarantee. But I do know that come December, 2014, I will be done with treatment. And I will officially be able to move on with my life.
The initial treatment was horrible. But it was like a dream. I floated through it, suffering, but without any other obligations or responsibilities. I was free to immerse myself in that process and to focus on surviving it. The follow up last spring was harder in some ways. I was back to work. I had to take a week of my vacation time to sit in the hospital receiving continuous injections. I lost my hair again. Living a 'normal' day to day life while undergoing that kind of chemotherapy was really hard. I have the utmost respect for those who can go through that and manage to function in their lives.
That experience was something I was dreading the pending repetition of this year. So I was counting down the months until this coming April. As the time was getting closer I began to lose my resolve a bit. I think the hardest thing has been feeling like I'm better, like all the way better, and then having to take more chemo and feel bad again. Over and over, I recover, start to feel really good, and then I have to take more. And I think that process was taking its toll on me. So as I contemplated another week in the hospital, the plastic bed, the isolation, vulnerability, and fear that I've experienced lying in those rooms, I was having a harder and harder time wrapping my head around it. It was becoming more and more difficult to reconcile how I have been feeling - better and better - with the need to put so much poison in my body again. Hadn't it been long enough, hadn't I responded well enough to the treatment, wasn't I OK already?
With those thoughts in my head I sat in one of the examination rooms at the clinic on Monday waiting for my doctor to knock on the door. When we began our conversation after he stepped into the room I steeled myself, preparing to be let down. I expected to receive his official opinion that, "we want to give you as much as we possibly can." Instead he started talking about all the different research on my disease. The various treatment regimens that are used. He compared them to my own treatment, and to my surprise he started talking about the fact that some maintenance schedules don't involve any induction at all. Of course, he said, some of those other regimens involve more chemo up front. Adding some of the drugs I took this past spring into the mix during the initial induction phase. And then he mentioned the idea that more and more, for patients under 30 (ok, not me, I'm no longer under 30), or maybe 40 (ok crap that's still me) they are using the same treatments they use in children - basically what I've been doing all along is the same chemo they would use to treat a kid with my disease - because individuals that age have been determined to be able to withstand the higher doses.
At this point he had hinted in both directions and internally I was on the edge of my seat, though I tried not to let on. And then he finally said it. Based on how well I responded to the initial treatment, on how well I've done all along, on the fact that I never had a positive CSF (they never found cancer in my cerebral spinal fluid), he didn't think I needed to do another round of induction chemotherapy.
It took me a few seconds to absorb this news. As it started to sink in I almost began to cry. I had been so scared of going back to the hospital, of the disruption to my life, my ability to do my job, the subsequent loss of my hair, for the third time, the whole thing. An enormous weight began to lift from my entire body.
We talked some more and decided that I would continue with the basic maintenance regimen I've been on since November, 2012. I get a shot each month, and I take oral meds regularly. This would continue until December of this year, and then we would stop. This year, 2014, would be it.
I'm happy to be able to share with you that the end is officially in sight. I now know when I will be able to hit the ejection button and escape from the roller coaster up and down of chemo and recovery and chemo and recovery for good. Of course, I don't know the future. Nothing is a guarantee. But I do know that come December, 2014, I will be done with treatment. And I will officially be able to move on with my life.
Tuesday, November 26, 2013
Happy Thanksgiving
One year ago yesterday I began the maintenance chemotherapy treatment that I am still undergoing today. This regimen is designed to prevent the cancer that I had from returning, and it is supposed to last two and a half years.
When I started maintenance I had been told all along that it would last for one and a half years. So the news that it would be 2.5 came as quite a shock to me. My doctor tempered this news with the idea that not everyone completes all of the maintenance therapy. Typically there are elements that individuals don't go through with, for whatever reason. For me this has already turned out to be the case. Originally I was prescribed two pills to take on a regular basis, but one of those drugs absolutely did not work for me, so now I don't take that one at all. Still, I was facing 2.5 years of continued chemo, and that prospect was horrifying to me when I first found out.
Today I have completed the first year of maintenance. The remaining time seems long to me still, but it is much less daunting. I've figured out what to expect, how to manage the side effects of the drugs I have to take, and those two things have helped me to cope much better with the process. I definitely have challenges with the treatment. The drugs make me tired, disoriented, foggy. It can be hard to focus at times, and I feel the effects of the pills I take each week. But it is manageable for me now.
One of the hardest things for me has been the concept that I have to put any sort of physical goals on hold. Previous to my diagnosis I was a very focused rock climber, and I had a set of objectives I had identified for myself that I was working to accomplish. I have had to set that kind of thing aside, instead focusing on just making my life work for me day to day. It's a psychological challenge, but then, much of the difficulty with cancer is psychological. It's hard to balance my desire to get in better shape and to work toward physical goals that I have with the need to simply make it through, and with the reality that on a weekly basis I am doing things that actually inhibit my ability to reach any such goals. Mostly it's frustrating, but only in moments. Often I will get back in touch with the feelings of appreciation for any and all experiences that I get to have now, and that perspective is comforting.
That first week of maintenance treatment a year ago was a nightmare. One of the drugs I started taking caused me quite a bit of pain. My doctor had told me that the maintenance would be easy, that I would be able to work and live my day to day life without any real trouble. So when that first week proved to be so difficult I wasn't even sure it was the chemo that was causing me pain. I started taking much higher doses of the pain medication I had been on. I was curled up in a ball in my bed, scared and confused, starting to wonder if I would ever feel better again. When Thanksgiving came around I was so sick that I could barely sit at the table. I remember taking a few bites of food and then heading back to bed. It was definitely one of the worst weeks I had.
But I made it through all of that. And to reflect on how far I've come in the past year is an amazing thing for me. It seems like another lifetime, the memory of feeling so ill and so frail feels like a distant past. I've gotten stronger, I've returned to my life, and I've been able to enjoy so much during this year. Life is indeed a beautiful experience. I believe that without any reservation. Despite the challenges, often because of them, there is so much opportunity to appreciate and enjoy the things we get to do, to see and feel, and share with each other. A year ago I was thankful just to have survived the previous several months, to even be alive. Now I am thankful for that, and for so much more. I'm excited for the next year of my life. Denise and I are planning to get married next fall. There are amazing opportunities for achievement, fulfillment, and fun in my work and play in the next year. I'm filled with joy and appreciation when I think of the support I've received from so many of you out there. It's a group effort, this thing we call life. And we're in that boat together, so thank you for helping me pull the oars this past year.
Before I sign off, I wanted to share with you that I am beginning a process of interviewing people who have survived cancer about their spiritual beliefs and the impact that cancer has had on them. It's a topic I've grown interested in over the past months as I've reflected on my own experiences. My intention is simply to find out whether having cancer has influenced people's perspective on spirituality or not, and to learn the various ways that has developed for each person. I'm not sure yet of the scope of my efforts. But I would like to reach as many people as I can, gather their experiences, and then go from there. So if you or anyone you know has cancer or has lived through cancer and might be interested in sharing their thoughts on this topic with me please reach out to me! I have a list of questions I will be happy to share.
Happy Thanksgiving to you, and to your families and loved ones.
Love,
Chris
When I started maintenance I had been told all along that it would last for one and a half years. So the news that it would be 2.5 came as quite a shock to me. My doctor tempered this news with the idea that not everyone completes all of the maintenance therapy. Typically there are elements that individuals don't go through with, for whatever reason. For me this has already turned out to be the case. Originally I was prescribed two pills to take on a regular basis, but one of those drugs absolutely did not work for me, so now I don't take that one at all. Still, I was facing 2.5 years of continued chemo, and that prospect was horrifying to me when I first found out.
Today I have completed the first year of maintenance. The remaining time seems long to me still, but it is much less daunting. I've figured out what to expect, how to manage the side effects of the drugs I have to take, and those two things have helped me to cope much better with the process. I definitely have challenges with the treatment. The drugs make me tired, disoriented, foggy. It can be hard to focus at times, and I feel the effects of the pills I take each week. But it is manageable for me now.
One of the hardest things for me has been the concept that I have to put any sort of physical goals on hold. Previous to my diagnosis I was a very focused rock climber, and I had a set of objectives I had identified for myself that I was working to accomplish. I have had to set that kind of thing aside, instead focusing on just making my life work for me day to day. It's a psychological challenge, but then, much of the difficulty with cancer is psychological. It's hard to balance my desire to get in better shape and to work toward physical goals that I have with the need to simply make it through, and with the reality that on a weekly basis I am doing things that actually inhibit my ability to reach any such goals. Mostly it's frustrating, but only in moments. Often I will get back in touch with the feelings of appreciation for any and all experiences that I get to have now, and that perspective is comforting.
That first week of maintenance treatment a year ago was a nightmare. One of the drugs I started taking caused me quite a bit of pain. My doctor had told me that the maintenance would be easy, that I would be able to work and live my day to day life without any real trouble. So when that first week proved to be so difficult I wasn't even sure it was the chemo that was causing me pain. I started taking much higher doses of the pain medication I had been on. I was curled up in a ball in my bed, scared and confused, starting to wonder if I would ever feel better again. When Thanksgiving came around I was so sick that I could barely sit at the table. I remember taking a few bites of food and then heading back to bed. It was definitely one of the worst weeks I had.
But I made it through all of that. And to reflect on how far I've come in the past year is an amazing thing for me. It seems like another lifetime, the memory of feeling so ill and so frail feels like a distant past. I've gotten stronger, I've returned to my life, and I've been able to enjoy so much during this year. Life is indeed a beautiful experience. I believe that without any reservation. Despite the challenges, often because of them, there is so much opportunity to appreciate and enjoy the things we get to do, to see and feel, and share with each other. A year ago I was thankful just to have survived the previous several months, to even be alive. Now I am thankful for that, and for so much more. I'm excited for the next year of my life. Denise and I are planning to get married next fall. There are amazing opportunities for achievement, fulfillment, and fun in my work and play in the next year. I'm filled with joy and appreciation when I think of the support I've received from so many of you out there. It's a group effort, this thing we call life. And we're in that boat together, so thank you for helping me pull the oars this past year.
Before I sign off, I wanted to share with you that I am beginning a process of interviewing people who have survived cancer about their spiritual beliefs and the impact that cancer has had on them. It's a topic I've grown interested in over the past months as I've reflected on my own experiences. My intention is simply to find out whether having cancer has influenced people's perspective on spirituality or not, and to learn the various ways that has developed for each person. I'm not sure yet of the scope of my efforts. But I would like to reach as many people as I can, gather their experiences, and then go from there. So if you or anyone you know has cancer or has lived through cancer and might be interested in sharing their thoughts on this topic with me please reach out to me! I have a list of questions I will be happy to share.
Happy Thanksgiving to you, and to your families and loved ones.
Love,
Chris
Monday, September 16, 2013
Floods
Ok, it's been ten weeks since my last update, so I'm way past due. I've been meaning to write something for a while now, but just haven't made it happen. The short version, for those of you who don't like delayed gratification, is that all is well with me. No real cancer-related news in fact, since the last time I wrote. I'm still plugging away with maintenance chemotherapy. Still taking pills each week, shot once per month. Haven't had a scan since spring, so nothing new to report, which of course is a good thing.
I've written a lot about how taking chemotherapy drugs has affected me. Physically, psychologically, in terms of my mood. I've talked about this feeling I've had that my life is on hold until I'm finished with chemo. I think that over the past several weeks I've been struggling a bit with some of those thoughts and feelings. It's tough for me to think about clearly because I don't have a good perspective on it yet. I feel like I'm still right in the middle of working through it all. But the gist is something along the lines of, all this cancer shit is making me feel depressed.
I have pretty significant swings in my mood and in my attitude about my situation. Some days I feel strong, like I could take on anything. Other days I feel defeated and tired and I just want to be able to move on to something else. This is something I've never faced before in my life (another in a long string of 'new' experiences for me related to having cancer); the reality of a prolonged physical and emotional challenge that lasts not just months, but years.
I've noticed as well that all of this can be difficult for me to actually talk about. I think about it a lot. I have all of these things flying around in my head. And I sort of forget that I haven't actually expressed them out loud. Or I'm not sure what to say about them. Writing about what I'm feeling has been helping me along the way with all of this. But now I'm writing less frequently because I'm more engaged with my normal life than I was before, and there are fewer things to report about my situation related to cancer. So, and I'm thinking through this as I write it, I maybe need to seek out someone to talk to, an impartial third party in this relationship between me and cancer. I think it would help me a lot. They have resources through the cancer clinic I go to, so maybe I'll go that route. If you know anyone who is a fabulous counselor for cancer patients feel free to send me their name.
Anyway, it's a tough thing. Not knowing what's going to happen. Not knowing why I feel the way I feel at any given time. Is it some symptom of returning cancer? Is my body too weak? Should I not have eaten that thing, or should I have eaten some other thing than what I ate? Am I too detached? Am I too preoccupied with all of this to the point that it's inhibiting my ability to be well? Why am I sick, yet again? Am I doing something wrong? Will I be able to live with myself if the decisions I'm making don't prevent my cancer from coming back? It can get overwhelming pretty quickly, all of the anxiety. It's perhaps akin to the amazingly catastrophic flooding we've had over the past week in Colorado (which, by the way, we are entirely safe from. Though many have lost their homes and continue to endure terrible and drastic challenges. My heart goes out to them all). It just comes out of nowhere and there's way too much of it to handle.
I still feel extremely fortunate. To have survived the past year. To be able to share continuing good news with you. Though I am still struggling with the feeling that my life is on hold. I can't know the outcome yet. I think the reality that I need to accept is simply that the outcome is not something we get to know ahead of time, ever. It's just a scary thing in this context I suppose.
On a personal note, I am recently engaged to be married (!) to a lovely woman whom some of you know, Denise. I asked her the big question in late July during a trip to visit her family in Vermont. The truth is I'd been wanting to ask her that question for months but I patiently waited for what I felt was the right time - I wanted to be somewhat prepared, you see. And she said yes to me, thankfully. So we're aiming for sometime next autumn, a year or so from now, but no formal date or plans to share yet.
Finally, I've had a lot of feedback, very positive for the most part, regarding this journal I've kept. I just wanted to thank you for following along with me. It means a lot to me, both to know that my journey is shared, for my sake and for others, and that you are supporting me along the way. This web page has now had over 10,000 views since I started writing last July. That's pretty amazing to me. Thanks again, I really love you.
-Chris
I've written a lot about how taking chemotherapy drugs has affected me. Physically, psychologically, in terms of my mood. I've talked about this feeling I've had that my life is on hold until I'm finished with chemo. I think that over the past several weeks I've been struggling a bit with some of those thoughts and feelings. It's tough for me to think about clearly because I don't have a good perspective on it yet. I feel like I'm still right in the middle of working through it all. But the gist is something along the lines of, all this cancer shit is making me feel depressed.
I have pretty significant swings in my mood and in my attitude about my situation. Some days I feel strong, like I could take on anything. Other days I feel defeated and tired and I just want to be able to move on to something else. This is something I've never faced before in my life (another in a long string of 'new' experiences for me related to having cancer); the reality of a prolonged physical and emotional challenge that lasts not just months, but years.
I've noticed as well that all of this can be difficult for me to actually talk about. I think about it a lot. I have all of these things flying around in my head. And I sort of forget that I haven't actually expressed them out loud. Or I'm not sure what to say about them. Writing about what I'm feeling has been helping me along the way with all of this. But now I'm writing less frequently because I'm more engaged with my normal life than I was before, and there are fewer things to report about my situation related to cancer. So, and I'm thinking through this as I write it, I maybe need to seek out someone to talk to, an impartial third party in this relationship between me and cancer. I think it would help me a lot. They have resources through the cancer clinic I go to, so maybe I'll go that route. If you know anyone who is a fabulous counselor for cancer patients feel free to send me their name.
Anyway, it's a tough thing. Not knowing what's going to happen. Not knowing why I feel the way I feel at any given time. Is it some symptom of returning cancer? Is my body too weak? Should I not have eaten that thing, or should I have eaten some other thing than what I ate? Am I too detached? Am I too preoccupied with all of this to the point that it's inhibiting my ability to be well? Why am I sick, yet again? Am I doing something wrong? Will I be able to live with myself if the decisions I'm making don't prevent my cancer from coming back? It can get overwhelming pretty quickly, all of the anxiety. It's perhaps akin to the amazingly catastrophic flooding we've had over the past week in Colorado (which, by the way, we are entirely safe from. Though many have lost their homes and continue to endure terrible and drastic challenges. My heart goes out to them all). It just comes out of nowhere and there's way too much of it to handle.
I still feel extremely fortunate. To have survived the past year. To be able to share continuing good news with you. Though I am still struggling with the feeling that my life is on hold. I can't know the outcome yet. I think the reality that I need to accept is simply that the outcome is not something we get to know ahead of time, ever. It's just a scary thing in this context I suppose.
On a personal note, I am recently engaged to be married (!) to a lovely woman whom some of you know, Denise. I asked her the big question in late July during a trip to visit her family in Vermont. The truth is I'd been wanting to ask her that question for months but I patiently waited for what I felt was the right time - I wanted to be somewhat prepared, you see. And she said yes to me, thankfully. So we're aiming for sometime next autumn, a year or so from now, but no formal date or plans to share yet.
Finally, I've had a lot of feedback, very positive for the most part, regarding this journal I've kept. I just wanted to thank you for following along with me. It means a lot to me, both to know that my journey is shared, for my sake and for others, and that you are supporting me along the way. This web page has now had over 10,000 views since I started writing last July. That's pretty amazing to me. Thanks again, I really love you.
-Chris
Monday, July 1, 2013
One Year
A year ago on June 21 I was diagnosed with Acute Lymphoblastic Lymphoma. The day before I had gone to the doctor, had a chest x-ray, and had learned that I probably had cancer. What followed was a complete reset of my life.
I've learned a lot over the past year. For instance, I previously had a very limited awareness of just how many people are affected by cancer. I had always assumed it was a disease that mostly older people dealt with. And while it's probably true that a majority of cancer patients are older, it's amazing how many people of all ages deal with various forms of cancer. I had no idea what it was like to have real health problems. To spend extended amounts of time in the hospital, or being sick. To be a patient.
I can't say for sure but my guess is that it had been at least five years since I'd been to see a doctor when I went that day a year ago. I had pretty much convinced myself I didn't need them. I figured (naively) that my body was capable of fighting off whatever infections or viruses I might contract. And I never imagined that it was possible that I would get cancer. I don't really like the term 'get cancer'. That makes it sound like something I picked up at the corner supermarket. "I'll be back in a few honey, just gonna run down to the store and get some cancer, you need anything?" I think it's the fact that I have no clue why or how I ended up getting it that makes that sound somewhat off to me. But I don't really know how else to say it, so we can go with that.
I've had a lot of support over the past year. First and foremost I have to thank my parents. My mom quit her job to take care of me when I got sick. Isn't that amazing? I moved home with my parents and she drove me around, to doctor's appointments, to and from the hospital, to the emergency room in the middle of the night, to get blood transfusions. And let me tell you, I wasn't fun to be around. I felt horrible almost all the time, and I hadn't really learned how to deal with it well. Though I'm not really sure how one would deal with it well. I was grumpy, and short with them, and impossible to please. Nothing tasted good, nothing made me feel good. I didn't want to talk, wanted to be left alone, and was nearly unwilling to explain any of what I was going through at any given time. So thank you Mom and Dad for putting up with me. For taking care of me. And for helping me survive the past year.
Next I want to thank my girlfriend, Denise. When I was diagnosed we weren't together at the time. But she came to visit me, spent time with me at the hospital, and was a true friend, in an unassuming and honest way that cannot be overstated. Thank you for being such an amazing, loving, supportive, and true person in my life Denise, I love you.
I would also like to send a special thank you to my very close friends Tony Cappa and Anna Berkman. When I was ready to move out of my parents' house this past winter they took me into their home and let me stay with them all spring. It was an incredibly comfortable and supportive environment to be in. And it was just what I needed to make the transition back to my life. I am forever indebted to you both. You are absolutely the best of the best and I love you until the end of time.
There is a long list of people who have visited me in the hospital and at home, people who have given me incredible, generous gifts, both material and otherwise. To all of the individuals who have given in so many ways to me over the past year, thank you, from the bottom of my heart. I cannot possibly express how significant you were to me, and to my survival. Because it was, and is, a matter of survival. I love all of you. Friends, family, co-workers. People who I may not even have met in person. I have been blessed with the opportunity to truly understand what it feels like to need the support of others, and you have given your support to me. You are the real reason I am here and thriving today. You gave me all the reasons I needed and more to keep going when I wasn't sure I could any longer. Thank you, thank you, thank you.
I recently had the final of four high dose shots that are a part of the maintenance chemotherapy regimen I'm on. So now I will return back to the low dose oral medication that I was taking all spring. It has been a challenging past couple of months for me. The hardest part of going through this chemo that I've been getting has been trying to function normally while I'm doing it. It's been a challenge for me to think clearly and focus, which has been tough at work. It's been hard to do much physical activity, which has contributed a bit I think to my less-than-ideal overall mood. Sickness and depression seem to go hand in hand, is really the point. Let's just say I'm glad this part is over.
It's definitely a milestone. I've completed a year of treatment. I've lived another year of life, though much of it is pretty hazy to me now. I'm definitely still dealing with chemo, and dealing with the reality of going to the doctor every week and not feeling great at times. But it will be easier now, and I will feel much more normal for a while. And thus far all the tests and scans they've done have revealed no cancer. I don't really know if they use the term remission with lymphoma, but things are definitely going in the right direction. I think the five year mark is the one that you try to shoot for; meaning that once you've survived five years you're determined to have Survived Cancer. But honestly I just want to get through the next year or so and hopefully be done with the treatment part.
I do find it slightly offensive that they call it chemo 'therapy'. Therapy my eye. My bad one. But hey, it's worked for me. And for all those out there who have the cure for cancer in a diet or an herb or a plant from the rainforest, at least take comfort from the fact that chemotherapy can do what it's intended to do. That's not to say that the diet or herb can't or won't help. Every situation is different. Every cancer is different. Just you know, keep it in perspective. And remember that when it comes to survival of any kind there has to be an element of luck - or whatever you prefer to call it.
Which brings me to my final thought for now. A lot is made of the ways in which surviving a near-death experience can change ones life. Specifically I want to share with you this: Life is a gift. Or in other words, life is an opportunity. An opportunity to experience things, to do things, to feel things. Whatever you choose to do, embrace that opportunity. Take advantage of it. Don't assume that life will be a certain way for you, or even that it will be at all. Instead embrace the opportunity to live your life. Be free to experience that life. Enjoy it. And don't forget to give some love to those around you.
Love,
Chris
I've learned a lot over the past year. For instance, I previously had a very limited awareness of just how many people are affected by cancer. I had always assumed it was a disease that mostly older people dealt with. And while it's probably true that a majority of cancer patients are older, it's amazing how many people of all ages deal with various forms of cancer. I had no idea what it was like to have real health problems. To spend extended amounts of time in the hospital, or being sick. To be a patient.
I can't say for sure but my guess is that it had been at least five years since I'd been to see a doctor when I went that day a year ago. I had pretty much convinced myself I didn't need them. I figured (naively) that my body was capable of fighting off whatever infections or viruses I might contract. And I never imagined that it was possible that I would get cancer. I don't really like the term 'get cancer'. That makes it sound like something I picked up at the corner supermarket. "I'll be back in a few honey, just gonna run down to the store and get some cancer, you need anything?" I think it's the fact that I have no clue why or how I ended up getting it that makes that sound somewhat off to me. But I don't really know how else to say it, so we can go with that.
I've had a lot of support over the past year. First and foremost I have to thank my parents. My mom quit her job to take care of me when I got sick. Isn't that amazing? I moved home with my parents and she drove me around, to doctor's appointments, to and from the hospital, to the emergency room in the middle of the night, to get blood transfusions. And let me tell you, I wasn't fun to be around. I felt horrible almost all the time, and I hadn't really learned how to deal with it well. Though I'm not really sure how one would deal with it well. I was grumpy, and short with them, and impossible to please. Nothing tasted good, nothing made me feel good. I didn't want to talk, wanted to be left alone, and was nearly unwilling to explain any of what I was going through at any given time. So thank you Mom and Dad for putting up with me. For taking care of me. And for helping me survive the past year.
Next I want to thank my girlfriend, Denise. When I was diagnosed we weren't together at the time. But she came to visit me, spent time with me at the hospital, and was a true friend, in an unassuming and honest way that cannot be overstated. Thank you for being such an amazing, loving, supportive, and true person in my life Denise, I love you.
I would also like to send a special thank you to my very close friends Tony Cappa and Anna Berkman. When I was ready to move out of my parents' house this past winter they took me into their home and let me stay with them all spring. It was an incredibly comfortable and supportive environment to be in. And it was just what I needed to make the transition back to my life. I am forever indebted to you both. You are absolutely the best of the best and I love you until the end of time.
There is a long list of people who have visited me in the hospital and at home, people who have given me incredible, generous gifts, both material and otherwise. To all of the individuals who have given in so many ways to me over the past year, thank you, from the bottom of my heart. I cannot possibly express how significant you were to me, and to my survival. Because it was, and is, a matter of survival. I love all of you. Friends, family, co-workers. People who I may not even have met in person. I have been blessed with the opportunity to truly understand what it feels like to need the support of others, and you have given your support to me. You are the real reason I am here and thriving today. You gave me all the reasons I needed and more to keep going when I wasn't sure I could any longer. Thank you, thank you, thank you.
I recently had the final of four high dose shots that are a part of the maintenance chemotherapy regimen I'm on. So now I will return back to the low dose oral medication that I was taking all spring. It has been a challenging past couple of months for me. The hardest part of going through this chemo that I've been getting has been trying to function normally while I'm doing it. It's been a challenge for me to think clearly and focus, which has been tough at work. It's been hard to do much physical activity, which has contributed a bit I think to my less-than-ideal overall mood. Sickness and depression seem to go hand in hand, is really the point. Let's just say I'm glad this part is over.
It's definitely a milestone. I've completed a year of treatment. I've lived another year of life, though much of it is pretty hazy to me now. I'm definitely still dealing with chemo, and dealing with the reality of going to the doctor every week and not feeling great at times. But it will be easier now, and I will feel much more normal for a while. And thus far all the tests and scans they've done have revealed no cancer. I don't really know if they use the term remission with lymphoma, but things are definitely going in the right direction. I think the five year mark is the one that you try to shoot for; meaning that once you've survived five years you're determined to have Survived Cancer. But honestly I just want to get through the next year or so and hopefully be done with the treatment part.
I do find it slightly offensive that they call it chemo 'therapy'. Therapy my eye. My bad one. But hey, it's worked for me. And for all those out there who have the cure for cancer in a diet or an herb or a plant from the rainforest, at least take comfort from the fact that chemotherapy can do what it's intended to do. That's not to say that the diet or herb can't or won't help. Every situation is different. Every cancer is different. Just you know, keep it in perspective. And remember that when it comes to survival of any kind there has to be an element of luck - or whatever you prefer to call it.
Which brings me to my final thought for now. A lot is made of the ways in which surviving a near-death experience can change ones life. Specifically I want to share with you this: Life is a gift. Or in other words, life is an opportunity. An opportunity to experience things, to do things, to feel things. Whatever you choose to do, embrace that opportunity. Take advantage of it. Don't assume that life will be a certain way for you, or even that it will be at all. Instead embrace the opportunity to live your life. Be free to experience that life. Enjoy it. And don't forget to give some love to those around you.
Love,
Chris
Wednesday, May 29, 2013
Two Shots and No Beer
Today I had the second of four methotrexate injections I'm getting as part of the next piece of the maintenance chemotherapy regimen I'm on. Along with the methotrexate I will have four asparaginase injections, which apparently involves a pretty painful shot in the old gluteus maximillion. These two injections are supposed to go in tandem, one day after the other, over four weeks. But after I got the first week's dose I had to take the next week off. The side effects are pretty intense for maintenance level chemo. Not as bad as the week in the hospital side effects, but pretty rough when I'm trying to focus on work and function in general.
Despite that I'm going to try to finish these shots up over the next three weeks. After the first ones a couple of weeks ago I not only felt physically bad I was in a terrible mood. I've noticed that chemo has a toxic affect on my personality as well as my body. I get really grumpy and negative and sort of depressed. I'd like to think there is a correlation between my mood and the toxicity of the drugs in my body. And there probably is. But there's probably also a component of just feeling down due to feeling physically bad, and not being able to do all the things I want to do, or would normally do. It's a constant source of frustration. All that adds up to me being salty. I just needed a week off last week, so I talked to my doctor and he was willing to be flexible with me.
I have been avoiding alcohol while I get these higher doses of chemo, and I have to say the timing on that is terrible. The one thing I want to do is relax, to relieve some of the stress of feeling bad. Self-medication in moderation is an underrated thing in my opinion. But my liver is simply too taxed to deal with booze right now. When I was in the hospital I received some reduced doses of chemo due to lower than normal liver function (which of course is due to all of the chemo I've been getting this whole time). And I've noticed that when I have a drink I really don't feel well the next day. So I'm drinks-free, which I have to say always makes me feel like a less fun person. Not to come across as a lush - I'm nothing of the sort - but the social aspect of having a beer with my friends is something I enjoy, and dearly miss at the moment.
We all have whatever challenges we're dealing with. Some issue we can complain about or identify as being less than ideal. And we also have the opportunity to look at things the other way. To see the positive side of our situation, whatever that may be. For me it's much more difficult to be in a positive frame of mind when I'm getting chemotherapy. But when I have some time away from it, even if it's just a week off, like I had last week, I typically shift back to a more positive place. I remember that there are much worse situations I could be in. And I remember that I'm blessed to be in any type of situation at all.
It's tough to gear up for these bouts of treatment, so I do my best not to think about it most of the time. I don't mind talking about it, but moment to moment I find I'm less stressed out if it's not hovering around in my mind. Because when I get these shots and I feel like total crap for several days, it's hard to remember that things are going well, and that I'm really lucky to be here and to be making such good progress. Everything takes on a darker hue and I get that old familiar feeling of helplessness and isolation. It's a difficult thing to express to others. It's easy to relate to the idea of it, but not as much to the reality of it. My brain gets really fuzzy and I have a hard time thinking about anything in the clear way I'm used to. And that brings on anxiety and depression. Like I said, we all have our challenges, and that one stands pretty tall in front of me during those times.
It helps to write about it. It's less of a burden on others, and on our interactions. You can read what I'm going through, and understand it perhaps better than if I tried to explain it in person. I can get it off my chest. Sometimes it's pretty scary, or maybe just overwhelming. It seems like a long road ahead. It seems like such an awful thing to be doing. And when I go to the clinic everyone there acts like it's the most normal thing in the world to pump chemicals into your body. For them it is; they do it every day. But it sure is weird to have this stuff injected into me and then to just say, 'See ya later', and go home. And it's disconcerting at best that the whole thing is a guessing game based on research studies that have been done. Knowing that everyone is different, every cancer is different, it is a pretty bizarre thing to consider.
Every day I think about other people who are going through this. People I know, and friends and family of people I know. I wish I could take it away for them. I wish I could give them good health and let them live without this burden. I want someone to do that for me too. But it doesn't work that way. We just have to face whatever comes our way. Without necessarily understanding anything about why it happens. We face it head on and we keep going, because anything else is a denial of the opportunity we have to live our lives as fully as possible.
All of this might sound a bit dark. It is important for me to express that side of things. It's definitely a part of my reality right now. But it's also not the whole picture. Things are going well. I'm able to work, to spend time with my friends and family, to play outside. I'm really fortunate. And I'm well aware of that. It's always amazing to hear from people who have followed along with this whole thing. It really helps me to know that I'm in your thoughts. I guess that's just one of the things we need in life, to know we're loved. I wish sometimes that I was better at expressing it to others. I do my best anyway, with that, and with all the rest too. I know you do as well.
Love,
Chris
Despite that I'm going to try to finish these shots up over the next three weeks. After the first ones a couple of weeks ago I not only felt physically bad I was in a terrible mood. I've noticed that chemo has a toxic affect on my personality as well as my body. I get really grumpy and negative and sort of depressed. I'd like to think there is a correlation between my mood and the toxicity of the drugs in my body. And there probably is. But there's probably also a component of just feeling down due to feeling physically bad, and not being able to do all the things I want to do, or would normally do. It's a constant source of frustration. All that adds up to me being salty. I just needed a week off last week, so I talked to my doctor and he was willing to be flexible with me.
I have been avoiding alcohol while I get these higher doses of chemo, and I have to say the timing on that is terrible. The one thing I want to do is relax, to relieve some of the stress of feeling bad. Self-medication in moderation is an underrated thing in my opinion. But my liver is simply too taxed to deal with booze right now. When I was in the hospital I received some reduced doses of chemo due to lower than normal liver function (which of course is due to all of the chemo I've been getting this whole time). And I've noticed that when I have a drink I really don't feel well the next day. So I'm drinks-free, which I have to say always makes me feel like a less fun person. Not to come across as a lush - I'm nothing of the sort - but the social aspect of having a beer with my friends is something I enjoy, and dearly miss at the moment.
We all have whatever challenges we're dealing with. Some issue we can complain about or identify as being less than ideal. And we also have the opportunity to look at things the other way. To see the positive side of our situation, whatever that may be. For me it's much more difficult to be in a positive frame of mind when I'm getting chemotherapy. But when I have some time away from it, even if it's just a week off, like I had last week, I typically shift back to a more positive place. I remember that there are much worse situations I could be in. And I remember that I'm blessed to be in any type of situation at all.
It's tough to gear up for these bouts of treatment, so I do my best not to think about it most of the time. I don't mind talking about it, but moment to moment I find I'm less stressed out if it's not hovering around in my mind. Because when I get these shots and I feel like total crap for several days, it's hard to remember that things are going well, and that I'm really lucky to be here and to be making such good progress. Everything takes on a darker hue and I get that old familiar feeling of helplessness and isolation. It's a difficult thing to express to others. It's easy to relate to the idea of it, but not as much to the reality of it. My brain gets really fuzzy and I have a hard time thinking about anything in the clear way I'm used to. And that brings on anxiety and depression. Like I said, we all have our challenges, and that one stands pretty tall in front of me during those times.
It helps to write about it. It's less of a burden on others, and on our interactions. You can read what I'm going through, and understand it perhaps better than if I tried to explain it in person. I can get it off my chest. Sometimes it's pretty scary, or maybe just overwhelming. It seems like a long road ahead. It seems like such an awful thing to be doing. And when I go to the clinic everyone there acts like it's the most normal thing in the world to pump chemicals into your body. For them it is; they do it every day. But it sure is weird to have this stuff injected into me and then to just say, 'See ya later', and go home. And it's disconcerting at best that the whole thing is a guessing game based on research studies that have been done. Knowing that everyone is different, every cancer is different, it is a pretty bizarre thing to consider.
Every day I think about other people who are going through this. People I know, and friends and family of people I know. I wish I could take it away for them. I wish I could give them good health and let them live without this burden. I want someone to do that for me too. But it doesn't work that way. We just have to face whatever comes our way. Without necessarily understanding anything about why it happens. We face it head on and we keep going, because anything else is a denial of the opportunity we have to live our lives as fully as possible.
All of this might sound a bit dark. It is important for me to express that side of things. It's definitely a part of my reality right now. But it's also not the whole picture. Things are going well. I'm able to work, to spend time with my friends and family, to play outside. I'm really fortunate. And I'm well aware of that. It's always amazing to hear from people who have followed along with this whole thing. It really helps me to know that I'm in your thoughts. I guess that's just one of the things we need in life, to know we're loved. I wish sometimes that I was better at expressing it to others. I do my best anyway, with that, and with all the rest too. I know you do as well.
Love,
Chris
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