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
Monday, December 8, 2014
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.
Subscribe to:
Posts (Atom)