It's been a while since my last post, and there are some good reasons for that. I'm done with the intensive induction chemotherapy, as you know, so I've been free to begin returning to my normal life. This has been a wonderful experience, save for a few challenges along the way.
The week of Thanksgiving, a month after my last treatment in the hospital, I began maintenance chemotherapy. This is a process that will last the next couple of years and mostly involves a monthly shot and some oral medication that I take myself. It's comprised of much lower doses of some of the drugs I was receiving before, and one new one that I hadn't had previously. That week that I began the maintenance regimen I started getting really sick. I was throwing up every evening and at night for a couple of days, and couldn't eat much. Then it got worse, and I was throwing up all day and night and couldn't eat at all. Thanksgiving dinner wasn't much of a feast for me this year.
On Friday, after a few days of this awfulness, I called my doctor and I ended up stopping the oral meds I was on for a while. Since then we've been experimenting through trial and error with the doses of the medications, trying to find a level that I can tolerate, that will allow me to function normally. This maintenance chemo, by the way, is supposed to be completely tolerable, and is supposed to allow the patient to function more or less normally, save for a little discomfort or mild side effects. What I experienced was much worse than what I was expecting to say the least.
I'm still working out the levels that I will be able to tolerate. Yesterday I had a blood test and it showed that my white blood counts are very low. This means that even the low doses I've received are too much for my bone marrow. So, this is an ongoing thing that I'm dealing with. But it's still way way better than what it was like before. I can get outside and go hiking and climbing and play with my friends, and it's wonderful.
Last week my buddy Aaron and I took a little road trip down to southern New Mexico and Arizona to see some sights and do some rock climbing. We saw Carlsbad Caverns, which may be the most amazing place I've ever been. The size of the caves and the beautiful formations inside them were astounding to me. My jaw was on the floor the whole time. I'll have some photos to share once I track down my camera's USB cable. Then we did a little climbing near El Paso and then over towards Tucson. We had beautiful weather and it was really nice to get out of town and see some places I'd never been before.
The biggest challenge for me in the past month has been what I would call a readjustment to the reality of my situation. When I finished treatment I felt like I had survived a really intense storm and that the skies would clear and everything would be all right again, I would get "back to normal". Then I started maintenance and had that extremely rough week of being sick and realized that this is very far from over. I have a long way to go with the maintenance treatment. And I'm going through what is proving to be a very difficult process of weening myself off of pain medication. So in a way it's like I've had to reabsorb the reality of things all over again. And that's been hard for me at times. But at the same time there's the perspective that everything I get to experience now is a gift of sorts. I could have died, I came really really close to dying. So all of this may have never been.
I have to tell you, without getting into a lengthy explanation of why, that my life has changed enormously. The way view things, the way I interpret things, even my very core values and beliefs have undergone a significant change. And I'm happier in many ways now than I ever have been. I've been able to reconnect with a lot of people from whom I felt totally cut off before. Those relationships have enriched my life in new ways. I'm filled, absolutely to the brim, with love and gratitude for it. I was talking with my friend last night and the thought we came to was that I wouldn't wish this on my worst enemy, but it's the best thing that's ever happened to me. I think that's a pretty common experience for people who survive cancer.
I'll write again, sooner this time, to fill you in on the progress with this trial and error maintenance chemo process. Thanks for reading.
Love,
Chris
Tuesday, December 11, 2012
Monday, November 12, 2012
Moving Forward
It's been three weeks now since my last chemotherapy treatment and I'm starting to feel a little bit normal again. As most of you are aware, I had a bone marrow biopsy and it came back showing no more cancer. It also showed that my bone marrow was at about 30% cellularity, which basically means that the chemo I've had so far has killed its ability to produce new cells to a point at which further treatments would be potentially too damaging to my body. My doctor, in the interest of not 'overtreating' me, has decided to suspend further chemo in light of these results. That of course means that I'm done with chemo, and that my cancer is effectively gone. However, my path to full recovery is far from over.
I have an appointment with my doctor this week to find out what will happen with the maintenance chemotherapy I'll be on for the next year and a half or so. This will be very low dose treatments that I'll take, mostly in pill form. They will be nothing like the chemo I've received so far. I will be able to take most of them as an outpatient. This is a huge relief to me, since I think that one more hospital stay at this point may have pushed me over the edge. I'd had enough, to be sure. My body is severely compromised. Psychologically I was getting close to what I could handle. There's only so much 'survival mode' a person can deal with. And I was just about ready to break. I'm incredibly relieved and thankful that I can move on to the next stage of things and begin to heal. I am excited to get back to work, to get back to my normal daily life. I'm so excited to get my body back and to be able to play again.
This stage of the process has its challenges. Yes I'm done with chemo now, but that doesn't mean I'm automatically better. It will take months for my body to detoxify from all of the chemicals its been subjected to. It will take months for me to regain a normal level of energy. I will do the best I can to rehabilitate myself. But it's not a fast process. I want this to be over, but it just isn't, and won't be for a long time. That isn't any reason to dispair, however. It's just the reality of where I'm at. The other tough thing for me at this point is to taper off the pain medication I've been taking. I probably experience as many negative side effects from the pain meds as I do from the chemo. And I can't just stop taking them all at once. I have to slowly decrease the amount I take each day so I don't have really awful withdrawal symptoms. It's not easy, still. But I'm so happy to be here, and not still in the midst of chemotherapy and the daily nausea. That's something that seems to be fading away a little more each day. Pretty soon I won't be sick to my stomach at all, and I am thrilled for that to come.
I feel like I've escaped from jail. I have this sense of freedom that I'd been dreaming about for months. And now that I'm finally feeling this way, I'm wondering what to do with it, what to do with myself. One of the things that has been on my mind quite a bit is that I want to be a resource for people going through cancer. I think that the most significant thing I wish I'd had more of is access to other people who had gone through a similar experience. Sure, I talked with people who had had cancer and gone through chemo themselves. But I think I would have liked to have someone who I could rely on more like a counselor. That's a lot to ask of somebody, but it's something I'd like to do for others if possible. The thing is, it's hard to relate to something so extreme if you haven't gone through it yourself. And one of the most difficult things for me to deal with was feeling alone a lot of the time. I wasn't literally alone, but I did feel isolated in my experience. So I want to be able to help someone else not feel that way. To answer their questions, listen to their complaints, be there for them to express their fears and concerns. Like I've said before, I had incredible support from my friends and family. But I honestly didn't want to burden them with any anxiety I was feeling. I know I could have, and I did at times. But you don't want your loved ones to worry about you, or to think you're not doing ok. They are scared enough as it is.
I don't think I'll ever be able to express enough gratitude for the support I've received from so many of you. Going through something like this is a huge emotional burden. And so many of you helped to lift that from me on so many different occasions. I really can't count the number of times I cried, feeling overwhelmed by someone's expression of concern, or just by the very fact that they were thinking of me. Those gestures of support are what carried me through this. I really never felt like I was facing the end of my life. But I certainly felt really really far away from the reality I'd known, and it was pretty scary at times. So having someone reach out would help bring me back from that far away scary place.
So, there's a long way to go. But that isn't much different than the normal reality of life. There's always more to do, more to experience. And even if some of it is difficult or unpleasant, it's better than the alternative of no experience at all. I'm so grateful to get to move on to this next phase. To begin to really heal. I'm so grateful to all of you who've been following my experience with cancer, it means a lot to me. Thank you. I will keep on going, and I know you will too. It's what we do. And hopefully this crazy bump in the road will provide us all with a little more meaning.
Love,
Chris
I have an appointment with my doctor this week to find out what will happen with the maintenance chemotherapy I'll be on for the next year and a half or so. This will be very low dose treatments that I'll take, mostly in pill form. They will be nothing like the chemo I've received so far. I will be able to take most of them as an outpatient. This is a huge relief to me, since I think that one more hospital stay at this point may have pushed me over the edge. I'd had enough, to be sure. My body is severely compromised. Psychologically I was getting close to what I could handle. There's only so much 'survival mode' a person can deal with. And I was just about ready to break. I'm incredibly relieved and thankful that I can move on to the next stage of things and begin to heal. I am excited to get back to work, to get back to my normal daily life. I'm so excited to get my body back and to be able to play again.
This stage of the process has its challenges. Yes I'm done with chemo now, but that doesn't mean I'm automatically better. It will take months for my body to detoxify from all of the chemicals its been subjected to. It will take months for me to regain a normal level of energy. I will do the best I can to rehabilitate myself. But it's not a fast process. I want this to be over, but it just isn't, and won't be for a long time. That isn't any reason to dispair, however. It's just the reality of where I'm at. The other tough thing for me at this point is to taper off the pain medication I've been taking. I probably experience as many negative side effects from the pain meds as I do from the chemo. And I can't just stop taking them all at once. I have to slowly decrease the amount I take each day so I don't have really awful withdrawal symptoms. It's not easy, still. But I'm so happy to be here, and not still in the midst of chemotherapy and the daily nausea. That's something that seems to be fading away a little more each day. Pretty soon I won't be sick to my stomach at all, and I am thrilled for that to come.
I feel like I've escaped from jail. I have this sense of freedom that I'd been dreaming about for months. And now that I'm finally feeling this way, I'm wondering what to do with it, what to do with myself. One of the things that has been on my mind quite a bit is that I want to be a resource for people going through cancer. I think that the most significant thing I wish I'd had more of is access to other people who had gone through a similar experience. Sure, I talked with people who had had cancer and gone through chemo themselves. But I think I would have liked to have someone who I could rely on more like a counselor. That's a lot to ask of somebody, but it's something I'd like to do for others if possible. The thing is, it's hard to relate to something so extreme if you haven't gone through it yourself. And one of the most difficult things for me to deal with was feeling alone a lot of the time. I wasn't literally alone, but I did feel isolated in my experience. So I want to be able to help someone else not feel that way. To answer their questions, listen to their complaints, be there for them to express their fears and concerns. Like I've said before, I had incredible support from my friends and family. But I honestly didn't want to burden them with any anxiety I was feeling. I know I could have, and I did at times. But you don't want your loved ones to worry about you, or to think you're not doing ok. They are scared enough as it is.
I don't think I'll ever be able to express enough gratitude for the support I've received from so many of you. Going through something like this is a huge emotional burden. And so many of you helped to lift that from me on so many different occasions. I really can't count the number of times I cried, feeling overwhelmed by someone's expression of concern, or just by the very fact that they were thinking of me. Those gestures of support are what carried me through this. I really never felt like I was facing the end of my life. But I certainly felt really really far away from the reality I'd known, and it was pretty scary at times. So having someone reach out would help bring me back from that far away scary place.
So, there's a long way to go. But that isn't much different than the normal reality of life. There's always more to do, more to experience. And even if some of it is difficult or unpleasant, it's better than the alternative of no experience at all. I'm so grateful to get to move on to this next phase. To begin to really heal. I'm so grateful to all of you who've been following my experience with cancer, it means a lot to me. Thank you. I will keep on going, and I know you will too. It's what we do. And hopefully this crazy bump in the road will provide us all with a little more meaning.
Love,
Chris
Sunday, October 28, 2012
Round 6 Update
It's been a while since I've written a post, so I wanted to fill you all in on the latest news. Recovery from Round 6 has been fairly rough thus far. I've had more pain in general with this round than with any other by a long shot. I had a blood transfusion this past Tuesday, which helped how I was feeling. But then by Thursday I was starting to get sick. So on Thursday evening I was admitted to the hospital with a fever and I've been there ever since.
There are a couple of important developments with my situation that I want to share with you. First off, my body has been getting progressively weaker with each round. This is normal with chemotherapy. One of the things that is affected most is my bone marrow's ability to produce new blood cells. So my blood counts, which get knocked out with each round of chemo, are bouncing back more slowly each time. Before I started the sixth round my blood platelets were low enough that I had to wait an extra week to start. After having received the sixth round, my counts are similarly low. So, there is a question around this issue. If my body isn't producing platelets and other blood cells, then it is possible that I've reached the limit of the amount of chemotherapy I can receive. The goal is to kill cancer cells, but not to completely decimate my bone marrow. One other possibility is that my disease is causing this issue. In other words, it's possible that there is cancer in my bone marrow and that's why it's not working like it should.
Now, based on my understanding of chemotherapy, combined with my experience undergoing chemotherapy, and keeping in mind the positive progress I've made so far with treatment, I believe that my weakened bone marrow is the result of the chemo. We will find out one way or the other this week. My doctor has scheduled a bone marrow biopsy that will determine just what is going on in there, and why I'm not producing blood like a normal person any more. This has some pretty big implications. It could mean I'm done with chemo, and can move on to the maintenance treatment. It could mean that the treatment I've received hasn't worked and that I'll have to try something else. Or it may indicate that I do need the last couple of rounds to finish off what I've started here.
I'm excited about this biopsy, being the optimistic person that I am. But there are certainly some scary potential outcomes. Mostly I just want what I'm going through to change, because it's getting close to the point of ridiculously difficult to endure. For now, I'll be in the hospital for another few days at the most. I'll get some more blood, and when my white counts come up either tomorrow or the day after I'll be able to head home. There's so much going on right now, so many things feel dynamic to me. We have the end of October, which to me has always represented the beginning of the end. We have the election looming next week. We're fast approaching the end of what has been an absolutely insane year. I am so ready to take this year's worth of experiences and apply them to my renewed life.
I'll post again when I get the bone marrow biopsy results. Wish me luck. Love you all!
cd
There are a couple of important developments with my situation that I want to share with you. First off, my body has been getting progressively weaker with each round. This is normal with chemotherapy. One of the things that is affected most is my bone marrow's ability to produce new blood cells. So my blood counts, which get knocked out with each round of chemo, are bouncing back more slowly each time. Before I started the sixth round my blood platelets were low enough that I had to wait an extra week to start. After having received the sixth round, my counts are similarly low. So, there is a question around this issue. If my body isn't producing platelets and other blood cells, then it is possible that I've reached the limit of the amount of chemotherapy I can receive. The goal is to kill cancer cells, but not to completely decimate my bone marrow. One other possibility is that my disease is causing this issue. In other words, it's possible that there is cancer in my bone marrow and that's why it's not working like it should.
Now, based on my understanding of chemotherapy, combined with my experience undergoing chemotherapy, and keeping in mind the positive progress I've made so far with treatment, I believe that my weakened bone marrow is the result of the chemo. We will find out one way or the other this week. My doctor has scheduled a bone marrow biopsy that will determine just what is going on in there, and why I'm not producing blood like a normal person any more. This has some pretty big implications. It could mean I'm done with chemo, and can move on to the maintenance treatment. It could mean that the treatment I've received hasn't worked and that I'll have to try something else. Or it may indicate that I do need the last couple of rounds to finish off what I've started here.
I'm excited about this biopsy, being the optimistic person that I am. But there are certainly some scary potential outcomes. Mostly I just want what I'm going through to change, because it's getting close to the point of ridiculously difficult to endure. For now, I'll be in the hospital for another few days at the most. I'll get some more blood, and when my white counts come up either tomorrow or the day after I'll be able to head home. There's so much going on right now, so many things feel dynamic to me. We have the end of October, which to me has always represented the beginning of the end. We have the election looming next week. We're fast approaching the end of what has been an absolutely insane year. I am so ready to take this year's worth of experiences and apply them to my renewed life.
I'll post again when I get the bone marrow biopsy results. Wish me luck. Love you all!
cd
Thursday, October 11, 2012
Reinvention
Every day I think about what I'm going to do, what life will be like when I'm finished with chemotherapy. In a lot of ways I have a blank canvas to work with. And so it's fun to consider all the different ways in which I could fill it in. The life I had before I was diagnosed is effectively gone. My apartment is gone, my old lifestyle is gone, my old body is gone. I will need to recreate all of those things for myself. It's exciting to think about. And it provides me with a lot of motivation. It feels both very close and very far away. Time is crawling by, and is flying by at the same time.
I've had a few opportunities in my life to sort of reinvent myself. A chance to choose a new place to live, and to make decisions about my lifestyle or the ways in which I will spend my time that can be a little more difficult to make when you're in a routine. They have always been times of significant change and growth for me. Because when these fresh starts have been made, they've represented internal change as much as external. That's definitely the case now. It's safe to say that being diagnosed with cancer and going through chemotherapy treatment is the most significant and most challenging thing I've ever experienced, by a long shot. I feel like my entire life was erased, wiped away. And for a while it was pretty scary, because I wasn't really sure whether I would ever get it back again. There are still plenty of things up in the air, but I feel really confident that I will get a chance to live a healthy life again soon. As I move closer to the end of my treatment I can taste the freedom that comes with this opportunity to start fresh again. And it's delicious.
Imagine if everything you had was taken away, and you could decide what to replace it with. Some things you would want to keep of course. And thankfully I have the good fate to be able to keep some of my favorite things in my life. But really take a moment some time and consider what is pleasing and fulfilling about your day to day existence, and what isn't. Take a moment to imagine what you might change if you could. I'm willing to bet that if there is anything you would change, you could probably change it. Some things we feel stuck with, and we decide to keep or to commit to even though we're not thrilled about them. But other things are simply there and become sort of invisible. Things that we really don't like, or wouldn't like if we had a chance to really examine them. It's not easy to do this, because it's hard to step back out of your self far enough to see these things. But for me, there were some ways in which I was thinking about my life, and some behaviors that were inspired by that thinking, that I am extremely glad to have lost. And I know that I will be a happier person for it going forward.
Being sick or unwell is a psychological challenge. It's a constant battle for me. I feel up, then I feel down, and when I feel down it can feel like the deepest hole, impossible to climb out of. But this shining future that I can see sitting on the horizon keeps me going forward. I know I'll make it there, even when it seems really really far away. And the moments in which I get a chance to connect with someone, or feel a little bit normal, and the moments in which someone shares something from their heart with me, those things keep me going. And the encouragement I've received from so many of you. The words of reinforcement and strength and love that so many of you have shared. Those things keep me going. Like I said, this is the hardest thing I've ever done. I'm not sure I could have done it without you. Thank you, I love you all, and I will definitely see you on the other side.
I've had a few opportunities in my life to sort of reinvent myself. A chance to choose a new place to live, and to make decisions about my lifestyle or the ways in which I will spend my time that can be a little more difficult to make when you're in a routine. They have always been times of significant change and growth for me. Because when these fresh starts have been made, they've represented internal change as much as external. That's definitely the case now. It's safe to say that being diagnosed with cancer and going through chemotherapy treatment is the most significant and most challenging thing I've ever experienced, by a long shot. I feel like my entire life was erased, wiped away. And for a while it was pretty scary, because I wasn't really sure whether I would ever get it back again. There are still plenty of things up in the air, but I feel really confident that I will get a chance to live a healthy life again soon. As I move closer to the end of my treatment I can taste the freedom that comes with this opportunity to start fresh again. And it's delicious.
Imagine if everything you had was taken away, and you could decide what to replace it with. Some things you would want to keep of course. And thankfully I have the good fate to be able to keep some of my favorite things in my life. But really take a moment some time and consider what is pleasing and fulfilling about your day to day existence, and what isn't. Take a moment to imagine what you might change if you could. I'm willing to bet that if there is anything you would change, you could probably change it. Some things we feel stuck with, and we decide to keep or to commit to even though we're not thrilled about them. But other things are simply there and become sort of invisible. Things that we really don't like, or wouldn't like if we had a chance to really examine them. It's not easy to do this, because it's hard to step back out of your self far enough to see these things. But for me, there were some ways in which I was thinking about my life, and some behaviors that were inspired by that thinking, that I am extremely glad to have lost. And I know that I will be a happier person for it going forward.
Being sick or unwell is a psychological challenge. It's a constant battle for me. I feel up, then I feel down, and when I feel down it can feel like the deepest hole, impossible to climb out of. But this shining future that I can see sitting on the horizon keeps me going forward. I know I'll make it there, even when it seems really really far away. And the moments in which I get a chance to connect with someone, or feel a little bit normal, and the moments in which someone shares something from their heart with me, those things keep me going. And the encouragement I've received from so many of you. The words of reinforcement and strength and love that so many of you have shared. Those things keep me going. Like I said, this is the hardest thing I've ever done. I'm not sure I could have done it without you. Thank you, I love you all, and I will definitely see you on the other side.
Monday, October 1, 2012
Rare Earth
Whoa, it hit me kind of hard this morning. I stepped into the shower and that song, 'I Just Want To Celebrate' was in my head. You know, the 1971 smash hit by Rare Earth. And as I started paying attention to the words I realized that I haven't been celebrating each day. I haven't been enjoying each day of my life. I haven't even been appreciating them.
It was another difficult week in chemotherapy land. I managed to make it through the blood count nadir this time without having to spend a night in the hospital, which is fantastic. But almost every day for the past week has been really unpleasant. I've had this intense stomach pain and nausea which have eliminated my appetite, caused me to throw up, and basically killed any and all joy I may otherwise have been experiencing.
On Saturday I went over to the hospital and they gave me a blood transfusion. And now, a couple of days later, I'm feeling much better than I had been. I'm still a bit queasy, but nothing like before. So I guess when I 'heard' that song in my head this morning I was a little more receptive to the message. What struck me right away was this emotional pang of sadness that I would spend my days in this beautiful world without appreciating them. I immediately thought of my family and the huge amount of love we feel for each other. And I couldn't imagine how I could possibly not appreciate every single moment I get to share with them.
The other thought I had was about having cancer. There are a couple of things here. First, if there's any lesson that someone with cancer, or any other potentially fatal illness, ought to learn, you would think it would be to appreciate each day, right? I mean, what could possibly create a clearer perspective on how valuable each day is than the possibility of having them taken away? And the truth is, I do feel this way. I am indeed more grateful than I can express to still be alive and breathing, and to be connected in any way to all of you. Because the second part of this of course is the reality that this might be it for me. I could realistically spend the rest of my life in treatment, physically miserable, and then die, never having regained my full health. I'm not saying I think that will happen, I don't. But it is a possible outcome, and so I thought about it. And that idea made me feel pretty sad as well. Not sad that I could die, but sad that I could spend the rest of my life unhappy.
It's pretty hard to be happy when you feel like crap. I'm not sure what it is, and maybe it's just me, but there just isn't much joy in feeling physical pain and discomfort all day and night. It's hard to step out of it, is the problem. It draws you in and sort of envelopes you in a dark and foggy haze, and you just have to wait it out. I often find myself literally curled up in a ball, breathing my way through that fog, just letting the time pass until it's gone. But the thing is, I'd rather live out each day, even if it happens to include experiencing that kind of pain, than to not be alive at all. Part of that has to do with me believing that I won't feel this way for much longer, and I'll be able to return to a pretty normal life. But part of it is simply my appreciation for the opportunity to experience life, no matter what it contains. Any experience is better than no experience at all. And that is the underlying concept that I can return to that allows me to appreciate each and every day, for exactly whatever it happens to be. After all, it's a day that I get to live. It's full of moments that I get to experience. All of those moments provide me with the opportunity to learn, to grow as a person, or simply to take them in and let them inform who I am.
I may not feel like celebrating each day. And frankly, for a lot of days, celebration would be a little much, don't you think? Some days are just barely survivable. But every single day is worth appreciating. It's another gift, another chance to feel, to express, to be. And so, I appreciate today. I appreciate that I am here to experience it. And that I can share that with you.
Love,
Chris
It was another difficult week in chemotherapy land. I managed to make it through the blood count nadir this time without having to spend a night in the hospital, which is fantastic. But almost every day for the past week has been really unpleasant. I've had this intense stomach pain and nausea which have eliminated my appetite, caused me to throw up, and basically killed any and all joy I may otherwise have been experiencing.
On Saturday I went over to the hospital and they gave me a blood transfusion. And now, a couple of days later, I'm feeling much better than I had been. I'm still a bit queasy, but nothing like before. So I guess when I 'heard' that song in my head this morning I was a little more receptive to the message. What struck me right away was this emotional pang of sadness that I would spend my days in this beautiful world without appreciating them. I immediately thought of my family and the huge amount of love we feel for each other. And I couldn't imagine how I could possibly not appreciate every single moment I get to share with them.
The other thought I had was about having cancer. There are a couple of things here. First, if there's any lesson that someone with cancer, or any other potentially fatal illness, ought to learn, you would think it would be to appreciate each day, right? I mean, what could possibly create a clearer perspective on how valuable each day is than the possibility of having them taken away? And the truth is, I do feel this way. I am indeed more grateful than I can express to still be alive and breathing, and to be connected in any way to all of you. Because the second part of this of course is the reality that this might be it for me. I could realistically spend the rest of my life in treatment, physically miserable, and then die, never having regained my full health. I'm not saying I think that will happen, I don't. But it is a possible outcome, and so I thought about it. And that idea made me feel pretty sad as well. Not sad that I could die, but sad that I could spend the rest of my life unhappy.
It's pretty hard to be happy when you feel like crap. I'm not sure what it is, and maybe it's just me, but there just isn't much joy in feeling physical pain and discomfort all day and night. It's hard to step out of it, is the problem. It draws you in and sort of envelopes you in a dark and foggy haze, and you just have to wait it out. I often find myself literally curled up in a ball, breathing my way through that fog, just letting the time pass until it's gone. But the thing is, I'd rather live out each day, even if it happens to include experiencing that kind of pain, than to not be alive at all. Part of that has to do with me believing that I won't feel this way for much longer, and I'll be able to return to a pretty normal life. But part of it is simply my appreciation for the opportunity to experience life, no matter what it contains. Any experience is better than no experience at all. And that is the underlying concept that I can return to that allows me to appreciate each and every day, for exactly whatever it happens to be. After all, it's a day that I get to live. It's full of moments that I get to experience. All of those moments provide me with the opportunity to learn, to grow as a person, or simply to take them in and let them inform who I am.
I may not feel like celebrating each day. And frankly, for a lot of days, celebration would be a little much, don't you think? Some days are just barely survivable. But every single day is worth appreciating. It's another gift, another chance to feel, to express, to be. And so, I appreciate today. I appreciate that I am here to experience it. And that I can share that with you.
Love,
Chris
Monday, September 24, 2012
Just Keep Going
Hello again. It's been a long past week. I spent about six days in the hospital receiving round 5 of my chemotherapy treatment. Each of the rounds alternate between two different regimens of drugs. So that means I only have to do this particular regimen one more time before I'm done, in round 7. The typical pattern I've experienced is that it takes me a couple of days to recover from a round of treatment. So when I return home from the hospital I'll have two to three days of feeling pretty rough, and things ease gradually until I'm back to a more normal state. In the past I've gone through this short recovery period and then had to undergo more treatment the following week. So just when I was feeling good again I would get knocked back down by a nice dose of poison to the brain. This round is the first time I don't have those follow up treatments. I'm extremely happy about this. Right now I'm at my most vulnerable. My blood counts are low and my immune system is on the fritz. I'm finally recovering from what was a fairly uncomfortable and challenging round of treatment physically. And so to be allowed to continue to rest and feel better each day is a huge deal.
I've been living this reality of having cancer for about three months now, but I'm still adjusting to the idea of it. It's just so foreign to me that I would be this sick, this far from healthy and functional. I go to the cancer clinic for my appointments with my oncologist and I'm almost always the youngest person there. Everyone else is old and sick and looks terrible. I'm exaggerating a little, but it's kind of bizarre to be there. I don't feel like I belong. My point is, I am still wrapping my head around this, on a daily basis. Even though I'm immersed in it and just getting pummeled by the reality of it, it just hasn't quite sunk in. Part of me feels like it's a good thing. After all, who wants to be comfortable with the idea of having cancer? I don't intend to ever settle into this. I intend to survive this treatment and move on with my life, healthy and happy as ever. But I have to accept where I'm at. I have to embrace the reality of it, because it takes a lot of will power and resolve to survive cancer, to rebuild your body, and to thrive afterward. So I have to be identified with it, while keeping it at arm's length. At least, that's how I'm thinking about it today. I'm not sure how other people deal with this same dilemma. I do think it would be really helpful for me to talk with others who are in my situation and find out.
I have continued to feel bolstered by the renewed resolve that I experienced before going back to the hospital last week. Accompanying my recommitment to undergoing chemotherapy has been a commitment to surviving chemotherapy, and surviving it well. I don't want to suffer through each day, even if I don't feel good. I want to kick ass. I don't want to crawl around feeling beaten down and defeated. I want to be a rock. I want to be solid and strong. And more and more I'm feeling that way. It's encouraging. And I think it's a huge component of what cancer is all about. Maybe it's the fact that there's nothing I can point to physically in terms of a root cause for my disease. Nothing that I've done that I can say, ok that's why I have this, that's why this has happened. But I just feel that there is a really big psychological factor in cancer. In having it, in beating it. I know there are physical things that caused it to happen. But because I don't know exactly what they are I can only really focus on what I can control. And the biggest thing is my state of mind. It's like the guy who was given a month to live with lung cancer and decided that he would survive. And he did. There's definitely something to that.
Another subtlety of this mental shift of mine has to do with not fighting against the idea that I have cancer. I have it. I have to deal with it. I have to go through this experience. And that's ok. It is what it is anyway. Before I was feeling strongly that I wanted to be doing more during this time. I wanted to be working part time, I wanted to be more productive, I wanted to be doing. Anything. But now I've been able to accept the fact that what I'm going through is intense enough. I don't need to be doing more. What I'm doing is pretty darn tough. So I'm going to put my focus on doing it well. Surviving this so I can really get back to doing the things I love and am excited about when it's all over. And not worrying about the fact that I can't do those things right this minute. Sure, I'm bored at times. And it's part of the challenge for me to be inactive. I find fulfillment in doing things, especially physically active things. So it's really difficult to have to sit out, so to speak, for six months. But right now this is my job. Making it through each day so that I can give back when this is over. That's what motivates me, keeps me going. I am excited thinking about it. And it feels so much better to just take care of what's in front of me, and not to worry about what else I 'should' be doing. This is it right now, and I'm finally feeling ok with that. That's a weight off my shoulders for sure.
I don't know what the next several weeks will bring. It seems like each round of treatment is getting harder for my body to deal with. But there are other things that are getting easier. And I only have three more to go now. Three more weeks of sitting in a hospital bed while the second hand of the clock ticks around. Some days it's all I can do just to let time pass by without losing my cool. But I'm doing it. I'm surviving. I'm outlasting this process. Soon it will be over and the horribleness will fade. The sharpness of my discomfort will fade. I will be able to think clearly, see clearly, hopefully use my voice clearly again. One of the things that clicked for me last year when I was rock climbing all the time was that to succeed you just have to keep going. To persevere. I learned how to make that shift mentally when I was getting close to falling or to feeling like I wouldn't make it. To choose to keep going. Just keep going, I would tell myself. So far that's worked pretty well.
I've been living this reality of having cancer for about three months now, but I'm still adjusting to the idea of it. It's just so foreign to me that I would be this sick, this far from healthy and functional. I go to the cancer clinic for my appointments with my oncologist and I'm almost always the youngest person there. Everyone else is old and sick and looks terrible. I'm exaggerating a little, but it's kind of bizarre to be there. I don't feel like I belong. My point is, I am still wrapping my head around this, on a daily basis. Even though I'm immersed in it and just getting pummeled by the reality of it, it just hasn't quite sunk in. Part of me feels like it's a good thing. After all, who wants to be comfortable with the idea of having cancer? I don't intend to ever settle into this. I intend to survive this treatment and move on with my life, healthy and happy as ever. But I have to accept where I'm at. I have to embrace the reality of it, because it takes a lot of will power and resolve to survive cancer, to rebuild your body, and to thrive afterward. So I have to be identified with it, while keeping it at arm's length. At least, that's how I'm thinking about it today. I'm not sure how other people deal with this same dilemma. I do think it would be really helpful for me to talk with others who are in my situation and find out.
I have continued to feel bolstered by the renewed resolve that I experienced before going back to the hospital last week. Accompanying my recommitment to undergoing chemotherapy has been a commitment to surviving chemotherapy, and surviving it well. I don't want to suffer through each day, even if I don't feel good. I want to kick ass. I don't want to crawl around feeling beaten down and defeated. I want to be a rock. I want to be solid and strong. And more and more I'm feeling that way. It's encouraging. And I think it's a huge component of what cancer is all about. Maybe it's the fact that there's nothing I can point to physically in terms of a root cause for my disease. Nothing that I've done that I can say, ok that's why I have this, that's why this has happened. But I just feel that there is a really big psychological factor in cancer. In having it, in beating it. I know there are physical things that caused it to happen. But because I don't know exactly what they are I can only really focus on what I can control. And the biggest thing is my state of mind. It's like the guy who was given a month to live with lung cancer and decided that he would survive. And he did. There's definitely something to that.
Another subtlety of this mental shift of mine has to do with not fighting against the idea that I have cancer. I have it. I have to deal with it. I have to go through this experience. And that's ok. It is what it is anyway. Before I was feeling strongly that I wanted to be doing more during this time. I wanted to be working part time, I wanted to be more productive, I wanted to be doing. Anything. But now I've been able to accept the fact that what I'm going through is intense enough. I don't need to be doing more. What I'm doing is pretty darn tough. So I'm going to put my focus on doing it well. Surviving this so I can really get back to doing the things I love and am excited about when it's all over. And not worrying about the fact that I can't do those things right this minute. Sure, I'm bored at times. And it's part of the challenge for me to be inactive. I find fulfillment in doing things, especially physically active things. So it's really difficult to have to sit out, so to speak, for six months. But right now this is my job. Making it through each day so that I can give back when this is over. That's what motivates me, keeps me going. I am excited thinking about it. And it feels so much better to just take care of what's in front of me, and not to worry about what else I 'should' be doing. This is it right now, and I'm finally feeling ok with that. That's a weight off my shoulders for sure.
I don't know what the next several weeks will bring. It seems like each round of treatment is getting harder for my body to deal with. But there are other things that are getting easier. And I only have three more to go now. Three more weeks of sitting in a hospital bed while the second hand of the clock ticks around. Some days it's all I can do just to let time pass by without losing my cool. But I'm doing it. I'm surviving. I'm outlasting this process. Soon it will be over and the horribleness will fade. The sharpness of my discomfort will fade. I will be able to think clearly, see clearly, hopefully use my voice clearly again. One of the things that clicked for me last year when I was rock climbing all the time was that to succeed you just have to keep going. To persevere. I learned how to make that shift mentally when I was getting close to falling or to feeling like I wouldn't make it. To choose to keep going. Just keep going, I would tell myself. So far that's worked pretty well.
Sunday, September 16, 2012
Committment
With each round of chemotherapy I find myself having to recommit to the process of treatment. This past week, for the first time since I was diagnosed, I began to feel like the cancer I had is gone. Obviously I have no way of knowing whether that's true or not. But intuitively I just feel like it's gone, like I don't have cancer anymore. Even if that's true, the remaining three months of chemotherapy will give me the best chance of avoiding a relapse. And if there's one thing I'm sure of, it's that I never want to go through this again. So I find myself recommitting to chemotherapy. Considering the prospect of spending another week in the hospital getting pumped full of drugs, and then dealing with the subsequent side effects.
After this past round and the challenging experience I had with a neutrapenic fever, this recommitment is a challenge. I desperately want to be done with this process. I desperately want my life back, my body back. I want to play outside and spend time with my friends, and to have days during which I don't feel nauseous or exhausted. And I know that I will have those things. When I finish chemotherapy I will be able to return to a normal day to day existence. The problem is that I don't want to live in the future, waiting, on hold. I don't want to spend the next three months thinking that things will only be better when, and so forth. I want to be happy now. I want to feel ok now.
This illustrates the psychological battle of having cancer. Part of it, anyway. The other part being that there are certain things that will never be the same. And there will always be the possibility that it will come back, or that I'll have some kind of long term complications from the chemotherapy, or something else along those lines. I'm not as worried about those things, however. It never helps to worry about something you have absolutely no control over. I can only move forward and try to believe that things will be ok. But this day to day process of waiting out my treatment is taking its toll on me. It's a challenge to stay present and to stay positive, knowing that this will all be over at some point but having to wait for that day to come. I'm hanging in there with it. I'm doing my best. I'm trying as hard as I can to take care of myself.
Yesterday I decided to stop taking pain medication, which I've been taking for the past couple of months every day. So my body is in a bit of turmoil, but it's not as bad as I thought it would be. It got to the point where I was wondering whether the meds were causing me more problems than they were fixing. We'll see how it goes. I may have to take them again. But I think I just needed to know that I didn't need them. The same way I needed to know that undergoing this treatment is a choice I'm making. Not something that was just forced upon my by circumstance.
So I've recommitted to chemotherapy. I've recommitted to the fight. I've recommitted to giving this my all. The same way I do every day. Tomorrow begins round 5 of my treatment. I've officially reached the halfway point. Three months from now I'll be done and I'll be recovering and focusing on healing my body as best I can. For now I will just do my best to survive and to persevere. I will meet each challenge head on, and will face each day with as much courage and strength as I can muster. The support of those around me helps significantly with this. Knowing I'm not alone, and that there are others out there pulling for me makes a huge difference. Thank you for your continued support and love. Round 5, here we come.
After this past round and the challenging experience I had with a neutrapenic fever, this recommitment is a challenge. I desperately want to be done with this process. I desperately want my life back, my body back. I want to play outside and spend time with my friends, and to have days during which I don't feel nauseous or exhausted. And I know that I will have those things. When I finish chemotherapy I will be able to return to a normal day to day existence. The problem is that I don't want to live in the future, waiting, on hold. I don't want to spend the next three months thinking that things will only be better when, and so forth. I want to be happy now. I want to feel ok now.
This illustrates the psychological battle of having cancer. Part of it, anyway. The other part being that there are certain things that will never be the same. And there will always be the possibility that it will come back, or that I'll have some kind of long term complications from the chemotherapy, or something else along those lines. I'm not as worried about those things, however. It never helps to worry about something you have absolutely no control over. I can only move forward and try to believe that things will be ok. But this day to day process of waiting out my treatment is taking its toll on me. It's a challenge to stay present and to stay positive, knowing that this will all be over at some point but having to wait for that day to come. I'm hanging in there with it. I'm doing my best. I'm trying as hard as I can to take care of myself.
Yesterday I decided to stop taking pain medication, which I've been taking for the past couple of months every day. So my body is in a bit of turmoil, but it's not as bad as I thought it would be. It got to the point where I was wondering whether the meds were causing me more problems than they were fixing. We'll see how it goes. I may have to take them again. But I think I just needed to know that I didn't need them. The same way I needed to know that undergoing this treatment is a choice I'm making. Not something that was just forced upon my by circumstance.
So I've recommitted to chemotherapy. I've recommitted to the fight. I've recommitted to giving this my all. The same way I do every day. Tomorrow begins round 5 of my treatment. I've officially reached the halfway point. Three months from now I'll be done and I'll be recovering and focusing on healing my body as best I can. For now I will just do my best to survive and to persevere. I will meet each challenge head on, and will face each day with as much courage and strength as I can muster. The support of those around me helps significantly with this. Knowing I'm not alone, and that there are others out there pulling for me makes a huge difference. Thank you for your continued support and love. Round 5, here we come.
Monday, September 10, 2012
Frying Pans And Fire
I just arrived home this afternoon after spending five days in the hospital. I had checked in this past Thursday morning with a fever, knowing I would probably need a blood transfusion and would be in a neutrapenic state (have low or no white blood cells). So far, with each of the four rounds of treatment I've undergone, I've experienced a need for a blood transfusion, due to being anemic, and I've been neutrapenic. This means that my immune system is pretty severely compromised and that my ability to fight off infections, even small ones, is more or less non-existent. Well this was perhaps the worst infection I've had yet in this process. My fever was fairly high at times, just below 103 or so, and lasted for a few days. I expected to check in, get some antibiotics and some blood, and be home in two or three days at the most. Instead I spent five days in the hospital, sweating and feverish, and in just about the most pain I can remember. There were definitely times during my stay at which I had to intentionally remind myself that I would survive the infection and that I would be healthy again, and would eventually get to go home. It's like that I suppose, having a fever. It can be disorienting. Time stretches out and gets a bit fuzzy and dreamlike. And when I woke up Monday morning and the doctor came in to see me, shared the news that my blood work looked good and I could go home, well I can't tell you how happy I was.
I knew that this past week would be a difficult one, and it was. I had received my sixth and final intrathecal chemotherapy dose (injected directly into my cerebral spinal fluid). And I knew that it would hit me hard. It definitely did. I felt the effects of that dose almost immediately, and by that evening I was already laid out, exhausted and feeling ill. I did not know I would get such an intense infection.
Hard is an understatement. The problem, for me at least, is that I had to try to figure out what to do to deal with the discomfort I was in, medication-wise. I already take pain medication to deal with the stomach discomfort caused by chemotherapy. This allows me to maintain a pretty reasonable level of energy and appetite and to function well enough that I'm not miserable or in bed all the time. So when I get really sick and the level of pain I'm experiencing kicks way up like that, I'm not sure exactly what to do. I don't want to take IV pain drugs, like morphine or dilaudid, because they don't last very long and they are really strong, which means they make me feel disoriented and just plain bad over time. Dilaudid actually makes me throw up, like immediately, and the other ones are almost as creepy. So I'm having this intense pain, and I'm taking narcotics already, and what the heck does one do? Well I remembered that I had previously taken two different oral pain meds, alternating them so I could take medicine more often than if I was taking just one type. And that's what I ended up doing while in the hospital over the weekend. I suggested my previous concoction to the doctors and they agreed to serve it up. It eased the pain enough that I was able to survive the worst of the infection without writhing in my bed all night, and was finally able to break through the fever to see the light of day again.
I did have a few moments while in that bed that were pretty crucial, psychologically. Those moments I've been talking about where a bad situation is reinterpreted as just a situation, and a breakthrough is made. It was a good experience to have a huge challenge and to shift through it and overcome. It was a good experience to face a mountain of anxiety and to watch it dissolve into thin air as I realized that it wasn't reality, it was just my interpretation thereof. I guess if nothing else, this whole thing is really good practice for that, again and again, over and over, week after week.
I ended up getting two separate blood transfusions during this hospital stay, two platelet transfusions, three or four different antibiotics, and definitely a whole bunch of narcotics. It was like stepping into what you expect to be a wading pool and dropping in over your head. I think that was why it seemed so unusually challenging. I was certainly not expecting the Spanish Inquisition. Needless to say, I'm converted. Or at least my body is.
Tuesday, September 4, 2012
Halfway There
I had my sixth and final intrathecal chemotherapy treatment today. This was the last piece of the fourth round of treatment for me, which means I am now officially halfway there!
So far the lumbar puncture treatments have been the most intense in terms of side effects, so I'm extremely happy to have had the last one. I'll need to ride out the next week or so of feeling less than hot due to the chemo and my low blood counts. But man do I feel good to be done with those.
I'll have four more rounds of the IV chemo I've been getting every three weeks. So four more week long stays in the hospital, and four more sessions of recovering. And then I'm done with chemotherapy and on to the maintenance period and I can get back to "normal" life. I'm over the hump.
I still recoil sometimes when I look in the mirror at my pale bald face. It just doesn't look quite like me. But I'm in there (if I focus on my eyes I can see me). I haven't gone anywhere. I'm still fighting and I'm still Chris. A survivor.
So far the lumbar puncture treatments have been the most intense in terms of side effects, so I'm extremely happy to have had the last one. I'll need to ride out the next week or so of feeling less than hot due to the chemo and my low blood counts. But man do I feel good to be done with those.
I'll have four more rounds of the IV chemo I've been getting every three weeks. So four more week long stays in the hospital, and four more sessions of recovering. And then I'm done with chemotherapy and on to the maintenance period and I can get back to "normal" life. I'm over the hump.
I still recoil sometimes when I look in the mirror at my pale bald face. It just doesn't look quite like me. But I'm in there (if I focus on my eyes I can see me). I haven't gone anywhere. I'm still fighting and I'm still Chris. A survivor.
Sunday, September 2, 2012
Wellness
I've been reading this book, Cancer: 50 Essential Things To Do, written by a guy who was diagnosed with stage VI lung cancer and given a month to live back in 1984. The story is that he ended up surviving his diagnosis, and was inspired to learn from other cancer survivors. What do people do, how do they approach their situation that makes the difference between life and death? The book is great. It's encouraging and informative. It includes a bunch of stories about people who have overcome cancer and are thriving in their lives. It's uplifting. And that is really the point of the book. To uplift.
In terms of my physical lifestyle, before I was diagnosed with cancer I lived an extremely healthy life. I ate a ridiculously clean diet, free of sugar, wheat, dairy, and processed foods in general. I didn't drink or do any drugs, I got adequate sleep, I didn't even go out late. The problem was, I didn't have any fun either. I was so fixated on being 'healthy' that I completely missed really being healthy. What I mean by that, and what this book suggests, is that there is far more to one's health than the physical well-being of our bodies. Or, rather, that physical health is closely related to mental and emotional health. This is something that most of us understand instinctively. We can relate to the idea that when we feel good about ourselves we feel better physically. And it's something I've talked about quite a bit around this experience of having cancer.
What I've found, in enduring the physical challenges of chemotherapy treatment, is that the psychological challenges I face are actually greater than the physical ones. I may feel like crap on a daily basis, be sick to my stomach, or completely exhausted, or even be anemic or have some kind of infection, but the main thing that determines my overall experience is my emotional state. It's a matter of perspective. One person may interpret an experience one way, and feel bad about it, and another person may take the same circumstances and find joy or hope or some kind of fulfillment.
I think this is something, as I've said, that most of us understand. The problem is that it's difficult to put into practice the art of interpreting what's happening in a positive way. The reason I'm so interested in this subject, is that through my experience in developing and fighting cancer I believe that the psychological component(s) of my health have been just as influential as the physical ones. To put it simply, when I got cancer I had never been more physically healthy (in theory), and I had never been so emotionally unwell. Does that mean that my emotional state 'caused' me to get cancer? Who knows. I don't believe there is one single factor at fault. And I'm not sure that it matters in the end exactly what caused the cancer. It happened, and I have it. But what does matter is that I learn from what I'm going through, and that I use the experience to help me live my life in a more effective way.
The point of this book is to understand that surviving cancer is about creating wellness, which is about taking responsibility for one's health in all areas. The idea that I have significant influence over my wellbeing, through the things I do, think, and feel, is empowering. It gives me a goal to move toward, and the author provides some ideas for ways to achieve that goal. The book has been helpful, and encouraging. But most important it's served as a reminder that I'm not a victim, nor am I a passive bystander just along for a ride. I may not be in control of what happens, but I am in control of how I feel about it, and how I think about it. And that may be the most important factor in my health overall.
Today I think there is hope for me. That thought makes me feel good about my situation and about myself. It helps me to let go of the anxiety that I feel about my physical health. It helps me to feel the love and support that is there all the time, from myself and from the world around me. That's a beautiful feeling. The world isn't out to get me, it wants me to succeed. I'm not sure if that's literally true, but that's how it feels. And that feels pretty darn good.
In terms of my physical lifestyle, before I was diagnosed with cancer I lived an extremely healthy life. I ate a ridiculously clean diet, free of sugar, wheat, dairy, and processed foods in general. I didn't drink or do any drugs, I got adequate sleep, I didn't even go out late. The problem was, I didn't have any fun either. I was so fixated on being 'healthy' that I completely missed really being healthy. What I mean by that, and what this book suggests, is that there is far more to one's health than the physical well-being of our bodies. Or, rather, that physical health is closely related to mental and emotional health. This is something that most of us understand instinctively. We can relate to the idea that when we feel good about ourselves we feel better physically. And it's something I've talked about quite a bit around this experience of having cancer.
What I've found, in enduring the physical challenges of chemotherapy treatment, is that the psychological challenges I face are actually greater than the physical ones. I may feel like crap on a daily basis, be sick to my stomach, or completely exhausted, or even be anemic or have some kind of infection, but the main thing that determines my overall experience is my emotional state. It's a matter of perspective. One person may interpret an experience one way, and feel bad about it, and another person may take the same circumstances and find joy or hope or some kind of fulfillment.
I think this is something, as I've said, that most of us understand. The problem is that it's difficult to put into practice the art of interpreting what's happening in a positive way. The reason I'm so interested in this subject, is that through my experience in developing and fighting cancer I believe that the psychological component(s) of my health have been just as influential as the physical ones. To put it simply, when I got cancer I had never been more physically healthy (in theory), and I had never been so emotionally unwell. Does that mean that my emotional state 'caused' me to get cancer? Who knows. I don't believe there is one single factor at fault. And I'm not sure that it matters in the end exactly what caused the cancer. It happened, and I have it. But what does matter is that I learn from what I'm going through, and that I use the experience to help me live my life in a more effective way.
The point of this book is to understand that surviving cancer is about creating wellness, which is about taking responsibility for one's health in all areas. The idea that I have significant influence over my wellbeing, through the things I do, think, and feel, is empowering. It gives me a goal to move toward, and the author provides some ideas for ways to achieve that goal. The book has been helpful, and encouraging. But most important it's served as a reminder that I'm not a victim, nor am I a passive bystander just along for a ride. I may not be in control of what happens, but I am in control of how I feel about it, and how I think about it. And that may be the most important factor in my health overall.
Today I think there is hope for me. That thought makes me feel good about my situation and about myself. It helps me to let go of the anxiety that I feel about my physical health. It helps me to feel the love and support that is there all the time, from myself and from the world around me. That's a beautiful feeling. The world isn't out to get me, it wants me to succeed. I'm not sure if that's literally true, but that's how it feels. And that feels pretty darn good.
Sunday, August 26, 2012
Courage
Tonight I check back in to the hospital to start round 4 of my chemotherapy treatment. The goal with the early check-in is to get started with the actual treatment first thing Monday morning, and to hopefully wrap up the treatment and be able to check out earlier. Everything takes time at the hospital. Tests need to be run, physicians consulted, orders written, medications delivered from the pharmacy and administered by the nurse, who has several other patients and is incredibly busy.
I've spent most of the past couple of weeks dreading the continuation of this chemotherapy process. Things are going well so far, and the treatment has been very effective. But day to day it is not fun, to say the least. I have been feeling isolated and paralyzed, unable to leave the house or enjoy most of the activities I usually do. More than anything else I think I've just been afraid of being in more pain and discomfort. I know this won't last forever, and I feel confident that I will be able to overcome the cancer. But I've been overwhelmed by these emotions and fears and it's been quite a challenge for me lately.
I was sharing some of these thoughts and feelings with my family the other night. I've always benefitted from being able to talk about things that are bothering me, and I'd been keeping these feelings bottled up. The people around me have enough stress to deal with, and I didn't want to burden them with mine. Also I didn't want others to worry about me, or to doubt my ability to persevere. But I realized I needed to talk about what was bothering me; to have it reflected back to me from someone else's perspective. My dad made a comment about courage. He was referring to the idea that courage is overcoming fear. And something about that comment triggered a shift in my thinking about my current situation. I'd been pitying myself, feeling sorry for myself for being stuck and somewhat incapacitated. I'd been afraid of going back to the hospital, being in more pain and discomfort there, and dealing with the effects of further chemotherapy. I realized that early on in this process I'd responded with courage, certainly more than I had been demonstrating lately. And I remembered that one of the most important factors in overcoming cancer is having a positive attitude; responding to the fear and the challenge with courage and determination. Somehow I was able to get back to that place of strength during that conversation. And since then I've been able to settle into that place, to remain determined to face and overcome the fears that come up, rather consistently, in this experience.
It's not easy, as I expressed in my last post. But it's not supposed to be. As we all know, life is full of challenges. Cancer seems to be one of the more challenging things people go through. But there are many many people who deal with cancer, and there are many who survive and thrive having dealt with it. In my experience, through what I've heard and read from those survivors, they are often much better for it. Such is the nature of challenging experiences in life. They provoke the most growth, the most learning. And therefore, in my opinion, they are to be embraced. Recoiling in fear from the prospect of continuing chemotherapy is the opposite of embracing this challenge. I'm not trying to chastise myself, but to remind myself to turn towards what scares me. To embrace the challenge before me. It's the most effective way to learn from it. And it's definitely the most effective way to move through the challenge successfully. In the case of cancer, where one's life hangs in the balance, success is an important outcome.
I've spent most of the past couple of weeks dreading the continuation of this chemotherapy process. Things are going well so far, and the treatment has been very effective. But day to day it is not fun, to say the least. I have been feeling isolated and paralyzed, unable to leave the house or enjoy most of the activities I usually do. More than anything else I think I've just been afraid of being in more pain and discomfort. I know this won't last forever, and I feel confident that I will be able to overcome the cancer. But I've been overwhelmed by these emotions and fears and it's been quite a challenge for me lately.
I was sharing some of these thoughts and feelings with my family the other night. I've always benefitted from being able to talk about things that are bothering me, and I'd been keeping these feelings bottled up. The people around me have enough stress to deal with, and I didn't want to burden them with mine. Also I didn't want others to worry about me, or to doubt my ability to persevere. But I realized I needed to talk about what was bothering me; to have it reflected back to me from someone else's perspective. My dad made a comment about courage. He was referring to the idea that courage is overcoming fear. And something about that comment triggered a shift in my thinking about my current situation. I'd been pitying myself, feeling sorry for myself for being stuck and somewhat incapacitated. I'd been afraid of going back to the hospital, being in more pain and discomfort there, and dealing with the effects of further chemotherapy. I realized that early on in this process I'd responded with courage, certainly more than I had been demonstrating lately. And I remembered that one of the most important factors in overcoming cancer is having a positive attitude; responding to the fear and the challenge with courage and determination. Somehow I was able to get back to that place of strength during that conversation. And since then I've been able to settle into that place, to remain determined to face and overcome the fears that come up, rather consistently, in this experience.
It's not easy, as I expressed in my last post. But it's not supposed to be. As we all know, life is full of challenges. Cancer seems to be one of the more challenging things people go through. But there are many many people who deal with cancer, and there are many who survive and thrive having dealt with it. In my experience, through what I've heard and read from those survivors, they are often much better for it. Such is the nature of challenging experiences in life. They provoke the most growth, the most learning. And therefore, in my opinion, they are to be embraced. Recoiling in fear from the prospect of continuing chemotherapy is the opposite of embracing this challenge. I'm not trying to chastise myself, but to remind myself to turn towards what scares me. To embrace the challenge before me. It's the most effective way to learn from it. And it's definitely the most effective way to move through the challenge successfully. In the case of cancer, where one's life hangs in the balance, success is an important outcome.
Tuesday, August 21, 2012
No Cakewalk
I just got home from the hospital where I spent the night getting three units of blood. I went in yesterday because I had been feeling really weak and tired and had some mild symptoms of infection that my doctor wanted me to get checked out. So I had some blood tests and they found that I was anemic so the doc ordered a blood transfusion. Unfortunately everything takes an extremely long time at the hospital so I had to stay overnight. All this just when I thought I had made it through this stretch without having to go back to the hospital. Something about this short stay was tough for me to take emotionally. I really wanted to spend this time at home. And although I am back home quickly, the day I spent there dragged on for a long time.
When having cancer and having to go through chemotherapy treatments becomes really challenging for me I find myself thinking things like, 'I just want this to be over', or, 'I don't want to do this any more', or, 'I just want my life back'. It's an overwhelming feeling of helplessness and despair. I don't spend the majority of my days feeling this way by any means, but there's no question that it comes up. The same way I have good and bad days physically I have them emotionally as well.
And the thing that makes it even harder is that I don't want to feel that way. It doesn't feel good. So I'm feeling bad, and then feeling bad about feeling bad. Today has been one of those days. Sitting around the hospital all day just waiting to be sent home, it is pretty easy to feel depressed. It really helps to be back home. But I still have the daunting weeks of chemotherapy ahead. And sometimes, like today, I just want it to be over already!
The way that I feel physically scares me as well. I have no idea what's going on inside my body. And I don't like having to take medication to deal with the discomfort. It's easy to worry about what's happening and what's going to happen. I suppose I just want to convey to you how challenging this really is. It's terrifying and depressing and exhausting and painful.
Now, I know there's a light at the end of the tunnel. And I can see it, I assure you. There are plenty of moments in which I feel positive and optimistic, as I've shared. I don't want to worry anybody or to give the impression that I'm doing badly. On the whole I am definitely doing really well, considering. It is good, however, to get these feelings off my chest. It helps to express them, even in writing. It helps to know that there are people who I can share these things with who will listen and support me. And honestly it helps to put these things in front of me and to cry or to just feel sad or whatever comes up. Because I have a tendency to ignore it when I feel bad. Who wants to feel bad, after all. And there's the issue of pride. I don't want people to think that I'm weak spirited. I don't want people to fuss over me. But once I get over the pride and just open up, I realize that it takes courage to do so, and that it really helps when people give me support. It's a matter of facing fear. I'm afraid of feeling sick, and of continuing to feel sick. I'm afraid that it won't end, or that it won't end when I want or expect it to end. And I'm afraid of how others view me or think of me. Thankfully facing those fears tends to diminish them, if not to eliminate them altogether.
Thank goodness for this opportunity I have to express myself. I can't tell you how therapeutic it is for me. I've always benefitted from being able to work through things 'out loud'. And hey, I'm one day closer to the end of these treatments. One day has passed, and I've learned some things, and I've been given the opportunity to experience that day, even if it wasn't all that fun.
Love to you
Chris
When having cancer and having to go through chemotherapy treatments becomes really challenging for me I find myself thinking things like, 'I just want this to be over', or, 'I don't want to do this any more', or, 'I just want my life back'. It's an overwhelming feeling of helplessness and despair. I don't spend the majority of my days feeling this way by any means, but there's no question that it comes up. The same way I have good and bad days physically I have them emotionally as well.
And the thing that makes it even harder is that I don't want to feel that way. It doesn't feel good. So I'm feeling bad, and then feeling bad about feeling bad. Today has been one of those days. Sitting around the hospital all day just waiting to be sent home, it is pretty easy to feel depressed. It really helps to be back home. But I still have the daunting weeks of chemotherapy ahead. And sometimes, like today, I just want it to be over already!
The way that I feel physically scares me as well. I have no idea what's going on inside my body. And I don't like having to take medication to deal with the discomfort. It's easy to worry about what's happening and what's going to happen. I suppose I just want to convey to you how challenging this really is. It's terrifying and depressing and exhausting and painful.
Now, I know there's a light at the end of the tunnel. And I can see it, I assure you. There are plenty of moments in which I feel positive and optimistic, as I've shared. I don't want to worry anybody or to give the impression that I'm doing badly. On the whole I am definitely doing really well, considering. It is good, however, to get these feelings off my chest. It helps to express them, even in writing. It helps to know that there are people who I can share these things with who will listen and support me. And honestly it helps to put these things in front of me and to cry or to just feel sad or whatever comes up. Because I have a tendency to ignore it when I feel bad. Who wants to feel bad, after all. And there's the issue of pride. I don't want people to think that I'm weak spirited. I don't want people to fuss over me. But once I get over the pride and just open up, I realize that it takes courage to do so, and that it really helps when people give me support. It's a matter of facing fear. I'm afraid of feeling sick, and of continuing to feel sick. I'm afraid that it won't end, or that it won't end when I want or expect it to end. And I'm afraid of how others view me or think of me. Thankfully facing those fears tends to diminish them, if not to eliminate them altogether.
Thank goodness for this opportunity I have to express myself. I can't tell you how therapeutic it is for me. I've always benefitted from being able to work through things 'out loud'. And hey, I'm one day closer to the end of these treatments. One day has passed, and I've learned some things, and I've been given the opportunity to experience that day, even if it wasn't all that fun.
Love to you
Chris
Thursday, August 16, 2012
Army of Love
One of the things I've heard a lot from other people who have had cancer is that I would eventually become really familiar with the pace and the flow of chemotherapy. I would, for example, be able to predict exactly how I would feel on certain days based on what treatments I'd had and when. Well, that is finally starting to happen for me. I realized this week that there is a pattern that I'm becoming very familiar with related to how I feel and when. And that caused me to reflect that it feels like I've been doing this for a really long time now. But in reality, it's only been two months. I'm halfway through the third of eight rounds of treatment. Things are just ramping up.
On the other hand, after the next round of treatment I'll be halfway through. And I've had some really significant positive progress. And I honestly feel really good about where things are with my treatment. It's comforting to know that certain things will affect me in certain ways and to be able to have some kind of idea how I might feel day to day. It still changes every hour, as I've mentioned before, but it's much more predictable now.
This week I had my fifth of six chemotherapy doses via lumbar puncture. This is a method of administering the drug that enables direct access to the central nervous system. Basically the medicine is injected directly into my lower back so it can get straight to my brain. I've come to find that these treatments seem to have the most extreme and immediate side effects. But I only have one more of those to go!
When I was at the clinic receiving this latest spinal tap I asked my doctor what he thought my day to day life would be like on the maintenance chemotherapy I'll be taking once this six months of intense treatment is over. It varies month to month, but it will be primarily much smaller doses taken orally over the course of about a year and a half. He told me that I would be more or less functioning normally on that treatment. I wasn't completely clear on this before, which is of course why I asked. So it's a huge relief to me to know that I will almost certainly be able to go back to work full time and to get back to a more normal life. Hearing that assessment from him of how things will be was really encouraging to me.
I've had some early positive results with the chemotherapy. I'm becoming more familiar with the ins and outs of my treatment. I am feeling better day to day than I was previously, having figured out which medications work best for me. I know that when I'm through this I will be able to have a normal life again. On top of that I have an incredibly supportive and loving family who are taking care of me. I have the most wonderful, giving friends a person could hope for. And I have this amazing extended network of support comprised of basically everyone who is connected in any way to me or my family. I feel like there is an army of love at my back.
Considering where I was two months ago, things are going remarkably well. And being able to know that, and feel that, and let that be the overall flavor of where I'm at emotionally seems to be even that much more healing and positive for me. Also, for the first time now I seem to be making it through a critical period of diminished immune capability without having to go to the hospital. This is the period of time they refer to as the nadir during which my white blood cell counts are really low and I'm vulnerable to infection. It happens during each round several days after I receive the most intense treatment. When I was at this point during round two I ended up getting a fever and having to go to the emergency room, and then stayed in the hospital for five or six days. So being able to weather the same storm at home is really nice.
The best thing about all this is that I know I will make it through this. I don't know what will happen down the road. But I absolutely know that I will make it through chemotherapy. That is an amazing feeling. As scary and unpleasant and daunting as all of this can be, it's going to be ok. I will make it!
On the other hand, after the next round of treatment I'll be halfway through. And I've had some really significant positive progress. And I honestly feel really good about where things are with my treatment. It's comforting to know that certain things will affect me in certain ways and to be able to have some kind of idea how I might feel day to day. It still changes every hour, as I've mentioned before, but it's much more predictable now.
This week I had my fifth of six chemotherapy doses via lumbar puncture. This is a method of administering the drug that enables direct access to the central nervous system. Basically the medicine is injected directly into my lower back so it can get straight to my brain. I've come to find that these treatments seem to have the most extreme and immediate side effects. But I only have one more of those to go!
When I was at the clinic receiving this latest spinal tap I asked my doctor what he thought my day to day life would be like on the maintenance chemotherapy I'll be taking once this six months of intense treatment is over. It varies month to month, but it will be primarily much smaller doses taken orally over the course of about a year and a half. He told me that I would be more or less functioning normally on that treatment. I wasn't completely clear on this before, which is of course why I asked. So it's a huge relief to me to know that I will almost certainly be able to go back to work full time and to get back to a more normal life. Hearing that assessment from him of how things will be was really encouraging to me.
I've had some early positive results with the chemotherapy. I'm becoming more familiar with the ins and outs of my treatment. I am feeling better day to day than I was previously, having figured out which medications work best for me. I know that when I'm through this I will be able to have a normal life again. On top of that I have an incredibly supportive and loving family who are taking care of me. I have the most wonderful, giving friends a person could hope for. And I have this amazing extended network of support comprised of basically everyone who is connected in any way to me or my family. I feel like there is an army of love at my back.
Considering where I was two months ago, things are going remarkably well. And being able to know that, and feel that, and let that be the overall flavor of where I'm at emotionally seems to be even that much more healing and positive for me. Also, for the first time now I seem to be making it through a critical period of diminished immune capability without having to go to the hospital. This is the period of time they refer to as the nadir during which my white blood cell counts are really low and I'm vulnerable to infection. It happens during each round several days after I receive the most intense treatment. When I was at this point during round two I ended up getting a fever and having to go to the emergency room, and then stayed in the hospital for five or six days. So being able to weather the same storm at home is really nice.
The best thing about all this is that I know I will make it through this. I don't know what will happen down the road. But I absolutely know that I will make it through chemotherapy. That is an amazing feeling. As scary and unpleasant and daunting as all of this can be, it's going to be ok. I will make it!
Friday, August 10, 2012
Round 3 Day 5 and Some Good News
I've been in the hospital receiving my third round of chemotherapy for the past five days. Since they started running the IVs on Monday afternoon I've been on a 24 hour drip the entire time I've been here. As I mentioned before this is my first experience with this version of my regimen that isn't distracted by me being intubated or recovering from other procedures, so it's my first unadulterated exposure to these drugs. It's been an intense round of treatment so far. I can tell by how I feel that the medication I'm receiving is really strong. Originally it looked like I may get out of here this afternoon. Now it may be tomorrow afternoon. But either way progress is being made and I'm happy to be moving along. Then I'll get to go home again and really rest.
Yesterday morning I had my second CT scan since being diagnosed back in June. The first scan was performed the day I checked into the hospital. It revealed the mass in my upper left chest and it showed how it had grown around my trachea, restricting my ability to breath. Shortness of breath was the number one issue I was having that lead me to go to the doctor in the first place. And it was pretty bad. When the doctors saw that first CT they were extremely alarmed. In fact, they were surprised I was even able to walk around and function as I had been. They rushed me into surgery to biopsy the mass and get a diagnosis so they could start treatment immediately. I had no time to react really. It was like being unexpectedly tossed into a raging white water current. Thankfully, it turns out I had a life jacket on.
I was wheeled down to Interventional Radiology yesterday morning for the second scan around 8am, but it was mid afternoon before I had a visit from a doctor who was able to share the results with me. She showed me the scan itself and the radiologist's report describing their findings and comparing them to the first scan. The second scan showed none of the mass that had been so apparent in the first scan. My trachea is no longer obstructed. There is no fluid around my heart or lungs as there had been when I first came in. And there is very little visual evidence of any remaining cancer whatsoever. In other words, the scan could hardly look much better!
This is amazing and encouraging news. It means that the treatment I've received so far has been very effective. It's important to keep in mind that it's very early on in this process. The original plan for my treatment included six months of high dose IV chemotherapy followed by about a year and a half of maintenance therapy. I'm not sure if this progress will change the course of my treatment or not. I don't have any idea whether things will look the same or better or worse in a month or six or a year. But I will admit that I felt optimistic before this scan was performed that it would show positive results based simply on the fact that I can breath normally again, and am feeling in better condition in many ways now than I did when I went to the hospital the first time (chemo side effects aside). So it wasn't a surprise to me to find out this good news, but it was certainly a huge boost emotionally. I've received a ton of encouragement, 'you can do this' type of messages. But there is something really concrete about this that has helped me shift into an even more positive place. I know that a full recovery is truly possible, and may even be likely now. And I'm really really really happy to be able to share this news with you.
Here's a little medical mumbo jumbo from the radiologist's report that confirms the positive findings:
1. Only minimal residual thickening of soft tissues in the anterior mediastinum and aortic-pulmonic window remaining fromt he bulky adenopathy that was present on the prior study in these areas.
2. Wide patency of the tracheobronchial system is now present.
3. No residual disease in the chest, abdomen, or pelvis.
This means that the tumor is largely gone, my airway is clear, they can't see any further cancer throughout my torso.
This is just a preliminary result. But it's an extremely good one, much better than could be expected. And every person on staff here at the hospital who I've talked to about it has confirmed their excitement about how things look. My nurse last night told me the CT results made his day. Thank you to all of you for continuing to support me, and for being so encouraging along the way. Staying positive, believing that I can overcome this and that I will, those are hugely important factors here and you have all made a significant contribution to my ability to do just that.
Love you all,
Chris
Friday, August 3, 2012
Rest Week
It's a roller coaster ride. One of the old wooden ones that makes that distinctive clackity clack sound that's scary and sort of satisfying at the same time. I'm strapped in, but don't feel completely secure, like if the coaster moved the right way I could just fly right out of my seat. And I'm definitely not in control of my destiny for the near future. I'm along for the ride, and I'm pretty sure I didn't want to get on this one in the first place. Too bad I can't blame it on peer pressure or machismo. And oh man, I'm already queasy and the ride is just getting started!
There are moments when this ride is thrilling. It's a constant process of discovery, of rebirth and redefining. There are moments that are flat out terrifying. I don't need to go too deeply into the details of that. But let's just say that in theory I'm not afraid of death. Once you die, well you don't have much to worry about. But I sure am afraid of the consequences for the people I love. I'm afraid of missing out. I am missing out, actually. But I'm really just afraid that I won't get back to where I can be a normal functioning person again.
Those fears are real. And I think it's important for me to acknowledge them. Not to try to hide from them. Part of dealing with this reality I'm living in is being realistic about it. The seriousness of what I have. The ways in which it's affecting my life now, and in the future. It's important to bring those things out and to look at them. From there I can confront and feel and process and move through them. I can go through the experience of being afraid, and I can find out that it's just a feeling. When I open my eyes I'm sitting right here. I'm a living breathing person and my life continues on just like yesterday, just like six months ago.
Right now I feel like I'm in a holding pattern. I'm waiting this thing out. I have a course of treatments that I need to complete, and while I'm in it I can't really escape back out of it. But at the same time it's moving forward quickly. I'm a quarter of the way through the six months of heavy chemotherapy. What I'm dying to know is how it will be after that. Will I regain full functionality? Will I be able to go back to work? I desperately want to be able to do that. To return to my life.
And the reason I'm so excited to get there is that I feel this huge potential. The change in perspective I've had feels inspiring to me. Like I just bought a new toy and I can't wait to try it out. In some cases that is literally true. I bought a new climbing rope this spring and I haven't used it yet, not even once. So, there's this anticipation, this building momentum that I'm feeling. And I think it's a good thing. It is helping to fuel my desire to be healthy again.
Monday I head back to St. Anthony's in Lakewood to start my third round of chemotherapy treatments. This will be yet another new experience. This third round is the same set of drugs as the first round, but the first round was complicated by the surgery I had to biopsy the cancer and the fact that I was still intubated when they started treatment. So I was recovering from surgery and had tubes in my chest and various other things. This will be the first 'normal' round with this regimen. Adventure on.
It's been a productive rest week. I've learned a lot about what works and what doesn't. What I need and what I don't. I'm starting to settle into the routine of chemotherapy. Don't worry though, I don't think it's possible to get too comfortable with this routine.
There are moments when this ride is thrilling. It's a constant process of discovery, of rebirth and redefining. There are moments that are flat out terrifying. I don't need to go too deeply into the details of that. But let's just say that in theory I'm not afraid of death. Once you die, well you don't have much to worry about. But I sure am afraid of the consequences for the people I love. I'm afraid of missing out. I am missing out, actually. But I'm really just afraid that I won't get back to where I can be a normal functioning person again.
Those fears are real. And I think it's important for me to acknowledge them. Not to try to hide from them. Part of dealing with this reality I'm living in is being realistic about it. The seriousness of what I have. The ways in which it's affecting my life now, and in the future. It's important to bring those things out and to look at them. From there I can confront and feel and process and move through them. I can go through the experience of being afraid, and I can find out that it's just a feeling. When I open my eyes I'm sitting right here. I'm a living breathing person and my life continues on just like yesterday, just like six months ago.
Right now I feel like I'm in a holding pattern. I'm waiting this thing out. I have a course of treatments that I need to complete, and while I'm in it I can't really escape back out of it. But at the same time it's moving forward quickly. I'm a quarter of the way through the six months of heavy chemotherapy. What I'm dying to know is how it will be after that. Will I regain full functionality? Will I be able to go back to work? I desperately want to be able to do that. To return to my life.
And the reason I'm so excited to get there is that I feel this huge potential. The change in perspective I've had feels inspiring to me. Like I just bought a new toy and I can't wait to try it out. In some cases that is literally true. I bought a new climbing rope this spring and I haven't used it yet, not even once. So, there's this anticipation, this building momentum that I'm feeling. And I think it's a good thing. It is helping to fuel my desire to be healthy again.
Monday I head back to St. Anthony's in Lakewood to start my third round of chemotherapy treatments. This will be yet another new experience. This third round is the same set of drugs as the first round, but the first round was complicated by the surgery I had to biopsy the cancer and the fact that I was still intubated when they started treatment. So I was recovering from surgery and had tubes in my chest and various other things. This will be the first 'normal' round with this regimen. Adventure on.
It's been a productive rest week. I've learned a lot about what works and what doesn't. What I need and what I don't. I'm starting to settle into the routine of chemotherapy. Don't worry though, I don't think it's possible to get too comfortable with this routine.
Sunday, July 29, 2012
Round 2 Day 15
I've talked a lot about the constant changing nature of how I feel physically. Here's a little example of that from the past 24 hours. Yesterday I felt pretty good most of the day. I was able to eat fairly normally, I got up and walked around a bit, I had some people visit me and I was able to hang out and talk with them without too much trouble. It was a good day. Then last night around bed time I started feeling this intense pain in my lower back. It turns out I hadn't really pooped for most of the week and at a certain point that just adds up to pure pain. Being in the hospital and on a bunch of different medications apparently creates such issues for me. So I spend most of the night trying different things and suffering through this pain, and then this morning I win that battle. Then, an hour or so later I start feeling queasy (just as my breakfast arrives of course) and promptly throw up. And I'm thinking that some of the ultra-laxative that I drank down last night must have still been in my stomach and made me sick. Because it's not the usual nausea I've been having, it's a bit different. But I'm not really sure. And I've already taken my morning dose of nausea and pain medication so I talk to my nurse and ask her for a different nausea medication and some tylenol in the hopes that combination will have some positive affect on my stomach's delicate balance. You get the idea. I'm telling you, it's something new all the time, can't get bored!
The nice thing though is that I've made some progress this week on understanding how to deal with the various discomforts of chemotherapy. I've realized that I do need some pain medication at times. There's no reason to sit around suffering when I could be in less pain. And every time I receive more treatments I learn more about how I react to them and what to expect. So it's a good learning process, and I'm feeling more and more comfortable with it, and less disoriented and blind-sided by everything.
My white blood cell counts have come way up today, so there's a fair chance I'll get to go home today. Just have to wait for the doctor to look at my numbers and make the call.
I wanted to take a moment here to thank some friends who helped me move yesterday. When I realized how the chemotherapy treatment process I'm going through would affect my life I decided it would be best to get rid of my apartment and stay with my parents for a while. Thankfully I was able to get out of my lease without too much trouble, and staying with my folks is proving to be really wonderful. My parents are taking really excellent care of me and it's just nice to have their love and support and presence nearby through this. Yesterday I asked some friends to help move my stuff out of my apartment and down to my parents' place. I am stuck in the hospital, I can't contribute to the move at all, and I was completely at the mercy of whatever others were willing to do to help me out. I am so incredibly appreciative of those of you who were able to help out yesterday. Thank you for everything. And thanks to those of you who were able to stop by afterwards and cheer me up :) I love you guys, you're amazing.
This is just a small example of the kindness and support people have been showing me. I've talked about it a lot. It means so much to me, and it is actually one of the most powerfully healing things I've experienced. Thanks to all of you for the love.
The nice thing though is that I've made some progress this week on understanding how to deal with the various discomforts of chemotherapy. I've realized that I do need some pain medication at times. There's no reason to sit around suffering when I could be in less pain. And every time I receive more treatments I learn more about how I react to them and what to expect. So it's a good learning process, and I'm feeling more and more comfortable with it, and less disoriented and blind-sided by everything.
My white blood cell counts have come way up today, so there's a fair chance I'll get to go home today. Just have to wait for the doctor to look at my numbers and make the call.
I wanted to take a moment here to thank some friends who helped me move yesterday. When I realized how the chemotherapy treatment process I'm going through would affect my life I decided it would be best to get rid of my apartment and stay with my parents for a while. Thankfully I was able to get out of my lease without too much trouble, and staying with my folks is proving to be really wonderful. My parents are taking really excellent care of me and it's just nice to have their love and support and presence nearby through this. Yesterday I asked some friends to help move my stuff out of my apartment and down to my parents' place. I am stuck in the hospital, I can't contribute to the move at all, and I was completely at the mercy of whatever others were willing to do to help me out. I am so incredibly appreciative of those of you who were able to help out yesterday. Thank you for everything. And thanks to those of you who were able to stop by afterwards and cheer me up :) I love you guys, you're amazing.
This is just a small example of the kindness and support people have been showing me. I've talked about it a lot. It means so much to me, and it is actually one of the most powerfully healing things I've experienced. Thanks to all of you for the love.
Friday, July 27, 2012
Top of the mornin' from my hospital bed
I'm nearing the end of the second week of the second three-week round of chemotherapy treatments that I'm undergoing. So I'm about five weeks into this process. This week has been by far the most challenging yet. On Monday I had an intrathecal (via lumbar tap) treatment of a particularly strong drug called cytarabine. Also around this time my blood cell counts started reaching the low point that happens when you get a bunch of chemotherapy. So on Tuesday I was feeling pretty bad, started developing a fever, and had to check back into the hospital that night. They gave me fluids and ran some tests, and found that my white blood cell count was zero, which basically means my immune system was on disability leave. So they admitted me to the hospital and have been keeping an eye on me since then. I'm taking a course of antibiotics and last night I had a blood transfusion. And yet again I'm in a nice hospital room with a lovely view and kind nurses and sufficient ice cream.
So, that's the update, the what's going on part. I haven't really told anyone (aside from my family of course) where I am or made much of an effort to communicate because I've been feeling so sick that I wasn't really capable of communication. So I apologize to any of you who wanted to see me or tried to see me this week. I've been off the map and out of commission. I'm not sure when I'll get to leave the hospital either. It will have to do with my blood cell counts coming back up to a reasonable level.
It's been an interesting experience though, feeling so incredibly bad. I've been sleeping a lot, and I've been trying to be medicated a lot. It's much easier to be out of my head on medication than to be writhing around in pain and discomfort. So I'm learning some things about my thresholds in that respect and what feels good or bad or like it's too much or not enough. Not sure I'll ever really figure it out :) I do keep coming back to the same sort of place in my head though. And that is, 'this won't last forever'. It won't. Nothing does. So if I'm having a terrible day, or a terrible moment, all I have to do is wait a little while, and it will be different. I've talked about it before. But I'm finding that this thought really is very helpful for me when I'm going through something challenging. I remember doing a long rock climb on a hot day during which my climbing partner and I didn't bring enough water. And the whole second half of the day while we were suffering from dehydration and terrible thirst, I just kept thinking, just keep going, it won't always be like this. And sure enough, we reached the top, and sure enough we got to drink a bunch of water when we got there, and in the end it actually made a pretty good story.
Well, so I'm sitting here in this hospital bed reflecting on the challenges of that hot day of rock climbing, and how miserable we were and what an incredible sense of accomplishment we had when we finally reached the top and had survived such an ordeal. And I'm thinking that experience pales somewhat in comparison to what I'm going through right now, having cancer and having basically everything in my life change. And I'm inspired by it. I have this feeling like what's coming out of this is bigger than anything I could have imagined. The challenge of it is certainly bigger than anything I could have imagined. And I know that it's the most important thing I've experienced in my life, and that it will inform the rest of my life in a hugely significant way. And I actually just want to write about it. I want to express it in that way because to write about it helps me to reflect on it for myself and gain perspective on it and learn from it in ways I may not otherwise. So thanks for reading my blog and reflecting it back to me. It's a healing thing. And it feeds this sense of community that has developed around this whole experience for me; something I've always desired but never knew how to cultivate.
Now if you'll excuse me, I'm going to see if I can discover the right combination of medications that will allow me to eat some breakfast. Enjoy this beautiful day.
So, that's the update, the what's going on part. I haven't really told anyone (aside from my family of course) where I am or made much of an effort to communicate because I've been feeling so sick that I wasn't really capable of communication. So I apologize to any of you who wanted to see me or tried to see me this week. I've been off the map and out of commission. I'm not sure when I'll get to leave the hospital either. It will have to do with my blood cell counts coming back up to a reasonable level.
It's been an interesting experience though, feeling so incredibly bad. I've been sleeping a lot, and I've been trying to be medicated a lot. It's much easier to be out of my head on medication than to be writhing around in pain and discomfort. So I'm learning some things about my thresholds in that respect and what feels good or bad or like it's too much or not enough. Not sure I'll ever really figure it out :) I do keep coming back to the same sort of place in my head though. And that is, 'this won't last forever'. It won't. Nothing does. So if I'm having a terrible day, or a terrible moment, all I have to do is wait a little while, and it will be different. I've talked about it before. But I'm finding that this thought really is very helpful for me when I'm going through something challenging. I remember doing a long rock climb on a hot day during which my climbing partner and I didn't bring enough water. And the whole second half of the day while we were suffering from dehydration and terrible thirst, I just kept thinking, just keep going, it won't always be like this. And sure enough, we reached the top, and sure enough we got to drink a bunch of water when we got there, and in the end it actually made a pretty good story.
Well, so I'm sitting here in this hospital bed reflecting on the challenges of that hot day of rock climbing, and how miserable we were and what an incredible sense of accomplishment we had when we finally reached the top and had survived such an ordeal. And I'm thinking that experience pales somewhat in comparison to what I'm going through right now, having cancer and having basically everything in my life change. And I'm inspired by it. I have this feeling like what's coming out of this is bigger than anything I could have imagined. The challenge of it is certainly bigger than anything I could have imagined. And I know that it's the most important thing I've experienced in my life, and that it will inform the rest of my life in a hugely significant way. And I actually just want to write about it. I want to express it in that way because to write about it helps me to reflect on it for myself and gain perspective on it and learn from it in ways I may not otherwise. So thanks for reading my blog and reflecting it back to me. It's a healing thing. And it feeds this sense of community that has developed around this whole experience for me; something I've always desired but never knew how to cultivate.
Now if you'll excuse me, I'm going to see if I can discover the right combination of medications that will allow me to eat some breakfast. Enjoy this beautiful day.
Monday, July 23, 2012
Round 2 Day 8
Are you comfortable? There are so many ways to look at this question. Do you feel physically comfortable, is it too hot or cold out, are you wearing socks that itch you. Of the astoundingly vast number of ways that I could possibly be uncomfortable most of them see to be within the realm of what I can control. If I'm cold I throw on a sweater. If an argument gets heated I can take some deep breaths, I can take responsibility for my own part of the matter, I can walk away. If I don't like what's on TV I can change it. I have so many options. To consider them all is to be overwhelmed, and, I would suggest, is a total waste of time. What's interesting are those moments in which we are uncomfortable and we have no idea how not to be. We don't know what's going on, or what's coming, or why, or who's involved, or the timing of things, or physically how we will be feeling.
These moments are the ones that terrify us. They are the ones that loom much larger in our minds than they do in the reality of when they're presented. The simple way out of this mind trip is, "if you're worried about it, it's probably not a problem." It sounds simple, and it is simple. But we all know better than that right.
I had this sliver of a realization the other day that I've been struggling to hold onto. It was pretty abstract and it came on in a fairly medicated daze I was existing in while laying on the couch. There's this sense that we all of deep down of whether things are right or wrong. You can call it intuition, or God's voice, or the mother earth spirits guidance. There is something that we have available to us, and every now and again it shines a little light beam of understanding through onto a problem that we're facing. (This of course usually happens after we've already gone through all of the misery and pain and frustration of the problem and are finally "ready" to get it - for whatever reason). But it's there. I know it's there because I've had the experience of seeing things clearly in retrospect and having them fit in and knowing (not just thinking but really KNOWING) what was/is right. It's a cool experience to have, and I"m sure many, if not most of you, can relate to it.
So yesterday I'm half baked on my couch just making sure I don't forget to keep breathing and this physical sensation moves through me accompanied with a thought. It has to do with the anxiety of something NOT BEING RIGHT. Like, I'm doing something wrong, or something is happening that shouldn't, or there is some aspect of the way things are right in this moment that isn't fair or balanced or good or, well RIGHT. And that thought, that feeling doesn't feel good. It creates this discord within my body and I can feel this physical sensation of strain against something. And then the thought shifts slightly and it's like my body aligns with it. In that moment I know that the place I'm in, the sensation and the thought I'm having, and the reality around it are only what they are. And there's no other way they can be. And that ball in the pit of my stomach, that tense ball, that relaxes for a minute, and I feel calm, and some of the discomfort I'm in may even fade back away a little, maybe not. But to physically feel myself align with reality was really freakin neat!
The point of all this is that we are looking for answers to questions all the time looking looking looking. And all the answers are already right there. I know it's been said many times before, in many ways, by many people. I know it's a cliche and that if it were that easy we'd all just wake up and walk around with smiles on our faces and eat tasteless nutri-paste. And that would be so uninteresting. But sometimes when things get desperate, or just really hard, you need a bone thrown your way. You need a little pin prick of light to let you know that this particularly dark tunnel does in fact have an ending.
So, do I feel comfortable today? Right now I am mildly comfortable. Later on I will likely be writhing around on my side ready to throw up. Maybe after that I'll sit down and have a nice meal with my family. I don't know. I can't know. It is literally beyond my control. So the next time I find myself getting worked up about how I feel, I just close my eyes and say, OK, I'll keep breathing, and see where we go from here.
These moments are the ones that terrify us. They are the ones that loom much larger in our minds than they do in the reality of when they're presented. The simple way out of this mind trip is, "if you're worried about it, it's probably not a problem." It sounds simple, and it is simple. But we all know better than that right.
I had this sliver of a realization the other day that I've been struggling to hold onto. It was pretty abstract and it came on in a fairly medicated daze I was existing in while laying on the couch. There's this sense that we all of deep down of whether things are right or wrong. You can call it intuition, or God's voice, or the mother earth spirits guidance. There is something that we have available to us, and every now and again it shines a little light beam of understanding through onto a problem that we're facing. (This of course usually happens after we've already gone through all of the misery and pain and frustration of the problem and are finally "ready" to get it - for whatever reason). But it's there. I know it's there because I've had the experience of seeing things clearly in retrospect and having them fit in and knowing (not just thinking but really KNOWING) what was/is right. It's a cool experience to have, and I"m sure many, if not most of you, can relate to it.
So yesterday I'm half baked on my couch just making sure I don't forget to keep breathing and this physical sensation moves through me accompanied with a thought. It has to do with the anxiety of something NOT BEING RIGHT. Like, I'm doing something wrong, or something is happening that shouldn't, or there is some aspect of the way things are right in this moment that isn't fair or balanced or good or, well RIGHT. And that thought, that feeling doesn't feel good. It creates this discord within my body and I can feel this physical sensation of strain against something. And then the thought shifts slightly and it's like my body aligns with it. In that moment I know that the place I'm in, the sensation and the thought I'm having, and the reality around it are only what they are. And there's no other way they can be. And that ball in the pit of my stomach, that tense ball, that relaxes for a minute, and I feel calm, and some of the discomfort I'm in may even fade back away a little, maybe not. But to physically feel myself align with reality was really freakin neat!
The point of all this is that we are looking for answers to questions all the time looking looking looking. And all the answers are already right there. I know it's been said many times before, in many ways, by many people. I know it's a cliche and that if it were that easy we'd all just wake up and walk around with smiles on our faces and eat tasteless nutri-paste. And that would be so uninteresting. But sometimes when things get desperate, or just really hard, you need a bone thrown your way. You need a little pin prick of light to let you know that this particularly dark tunnel does in fact have an ending.
So, do I feel comfortable today? Right now I am mildly comfortable. Later on I will likely be writhing around on my side ready to throw up. Maybe after that I'll sit down and have a nice meal with my family. I don't know. I can't know. It is literally beyond my control. So the next time I find myself getting worked up about how I feel, I just close my eyes and say, OK, I'll keep breathing, and see where we go from here.
Wednesday, July 18, 2012
Round 2 Day 3
So far my second stay in the hospital has been vastly different from the first. To start, I'm at St. Anthony's main hospital in Lakewood, instead of at the North campus up in Westminster. The Lakewood facility is brand new, it's been open about a year, and it is a really beautiful and well designed hospital. The rooms are larger and cleaner and more comfortable. The cafeteria is nicer (if a bit more expensive). And they have all these wonderful services like the music therapist I mentioned yesterday on Facebook. This morning a massage therapist came to my room and gave me a wonderful foot massage. I feel like I'm being treated with a level of care that one might find in a four star hotel. There is coffee service and refrigerators for me to keep food in, and I have a beautiful view of the city from my sixth floor room. It's quite an experience. Actually it's a bit surreal, especially given the intensity of what my body is going through, and the intensity of the chemotherapy treatments I'm receiving. I'm basically having mustard gas pumped into by body day and night, along with plenty of other medications to protect me from those toxic chemicals and their side effects. It really is a fascinating approach to treating an illness. Kill everything and then hope the right things can recover and the wrong ones can't. I have total faith in my doctors though, they are amazing advocates for me. And really what choice do I have? My life is in their hands.
On top of that I've been feeling better at the hospital over all than I had been at home. Perhaps that has to do with being on so much medication here. Maybe it's the view from my room or the beautiful rendition of John Denver's 'Today' that I heard yesterday. Or maybe this whole experience just changes every hour or so and I really don't know what's coming next. But having someone bring me coffee and having my wonderful parents taking care of me constantly, and having friends visit and nurses sharing their stories and people expressing all this love and support and help and healing in my direction sure feels special. It helps that I'm not in pain, that I'm not on narcotics, that I'm eating plenty of ice cream and that I can rest or read or watch a movie or watch the food network to perk up my appetite. In a way it's like I'm on vacation. And in another way it's like I'm in a constant state of delirious misery. But that's what I like about life. It's an adventure. You don't know what's coming next, and it's not really up to you. And when it's really challenging, like this is now, well you know a couple of things. You know it won't last forever, and you know that at the end of this experience you will have learned something invaluable about yourself and how you deal with adversity, and it will make you a stronger and better person. So that's where I'm living in my head. I'm diving into each moment that hits me, and some of them I have to ball up and tuck my way through, and others and I can stretch out and soak up like warm sunshine. And each of them has its own beauty and its own flavor that I can cherish for what they are. It's a very immediate, very intimate experience of this series of moments.
I wanted to make a comment for folks who visit or want to visit. The roller coaster nature of my physical state make it a bit of a crap shoot as to how receptive I'll be when you happen to drop by. Ultimately I want to see you. Any and all of you. It brightens my spirits immensely to have people come by and spend a few minutes or an hour or whatever happens to work out. So if you do happen to drop by and see me, as you are more than welcome to do, please just keep in mind that I may be feeling great, or possibly terrible when you show up, and know that I may have to close my eyes and nap or I might be up for playing a game. I just don't know because how I'm feeling changes about every hour or so. So, please come by if you feel to do so, but just be prepared for anything :)
Enjoy this beautiful summer day wherever you are, whatever you're doing.
Love,
Chris
On top of that I've been feeling better at the hospital over all than I had been at home. Perhaps that has to do with being on so much medication here. Maybe it's the view from my room or the beautiful rendition of John Denver's 'Today' that I heard yesterday. Or maybe this whole experience just changes every hour or so and I really don't know what's coming next. But having someone bring me coffee and having my wonderful parents taking care of me constantly, and having friends visit and nurses sharing their stories and people expressing all this love and support and help and healing in my direction sure feels special. It helps that I'm not in pain, that I'm not on narcotics, that I'm eating plenty of ice cream and that I can rest or read or watch a movie or watch the food network to perk up my appetite. In a way it's like I'm on vacation. And in another way it's like I'm in a constant state of delirious misery. But that's what I like about life. It's an adventure. You don't know what's coming next, and it's not really up to you. And when it's really challenging, like this is now, well you know a couple of things. You know it won't last forever, and you know that at the end of this experience you will have learned something invaluable about yourself and how you deal with adversity, and it will make you a stronger and better person. So that's where I'm living in my head. I'm diving into each moment that hits me, and some of them I have to ball up and tuck my way through, and others and I can stretch out and soak up like warm sunshine. And each of them has its own beauty and its own flavor that I can cherish for what they are. It's a very immediate, very intimate experience of this series of moments.
I wanted to make a comment for folks who visit or want to visit. The roller coaster nature of my physical state make it a bit of a crap shoot as to how receptive I'll be when you happen to drop by. Ultimately I want to see you. Any and all of you. It brightens my spirits immensely to have people come by and spend a few minutes or an hour or whatever happens to work out. So if you do happen to drop by and see me, as you are more than welcome to do, please just keep in mind that I may be feeling great, or possibly terrible when you show up, and know that I may have to close my eyes and nap or I might be up for playing a game. I just don't know because how I'm feeling changes about every hour or so. So, please come by if you feel to do so, but just be prepared for anything :)
Enjoy this beautiful summer day wherever you are, whatever you're doing.
Love,
Chris
Monday, July 16, 2012
Round 2 Day 1
I just checked into the hospital to begin my second round of chemotherapy treatment. I feel really hopeful today, excited to be moving forward with this process. The past week at home has actually been pretty challenging. I've been playing with the medications I'm on, experimenting with what works and what doesn't. At this point I've determined that the fewer meds I take the better I feel. Which is pretty interesting to me, but also a relief. When I was in the hospital the first time I had a nurse who wondered if all the anti-nausea meds I was taking were actually making it worse for me, and I think she may have been right after all. I have definitely experienced adverse effects from pain medication, and sedation in general has blocked me up like a cork in the ass. And the other night after I'd been off anti-nausea meds for 24 hours and tried taking them again I started throwing up like I hadn't in days. So I'm done. It'll be interesting to see how my doctors react to me not wanting any medication. But hey, it's my body right, only I can tell what's working and what isn't. Different nurse taught me that one.
So the adventure continues, and an adventure it surely is. Each day contains so many unknowns, and so many challenges. But if there's one thing I've embraced in my life it's adventure. After all I'm a rock climber in my heart. One who explores and loves wild unknown places, and danger, and risk. So, high dose Methotrexate, and whatever else they're throwing at me this week. Bring it on. The cancer inside me needs a kick in the ass. And this will do the trick. And I'm ready to take on whatever comes along with it. I know it's going to be hard, and I know I'm going to feel worse than I do now. But after what I've already been through it's just another mile, just another stretch of flat water under the bow. You pull through it and the place you end up is always worth the effort.
Thanks to all of you for following my journey and for reading my writing. It helps to know I'm not alone. Keep you posted!
So the adventure continues, and an adventure it surely is. Each day contains so many unknowns, and so many challenges. But if there's one thing I've embraced in my life it's adventure. After all I'm a rock climber in my heart. One who explores and loves wild unknown places, and danger, and risk. So, high dose Methotrexate, and whatever else they're throwing at me this week. Bring it on. The cancer inside me needs a kick in the ass. And this will do the trick. And I'm ready to take on whatever comes along with it. I know it's going to be hard, and I know I'm going to feel worse than I do now. But after what I've already been through it's just another mile, just another stretch of flat water under the bow. You pull through it and the place you end up is always worth the effort.
Thanks to all of you for following my journey and for reading my writing. It helps to know I'm not alone. Keep you posted!
Sunday, July 15, 2012
Words Are Not Enough
One of the most significant things that has come out of this experience thus far for me has to do with the way I relate to other people. I don't think most people in my life realize that before this happened, particularly in the six months or so leading up to my diagnosis, I was becoming increasingly depressed and unhappy. In fact, I had never felt more cut off from others, or more cut off from myself, as I did during that time. And it was getting worse every day. It's as if the disease growing in my body was directly related to this disease in my heart. Actually, I believe that's true. But that is neither here nor there. The point is, when I learned that I had cancer something changed immediately. I realized that all the things I'd been worried about were irrelevant. So in this way my diagnosis came as a huge relief to me. My problems from before were resolved (more like dissolved) and all the problems of my future were (though they were immense and as yet far beyond my understanding) clear and right in front of me. At least I finally knew what was wrong and how to go about dealing with it.
Then something incredible happened. People started reaching out to me who I had forgotten existed, who I hadn't heard from in years, who I had completely disconnected from or lost touch with or otherwise had faded from my life. And my close friends reached out too, and my family near and far, and other people who I had been longing to be close to contacted or visited or just let me know they were there for me. And it became so clear to me, this is what's important in life. Relationships are what matters. More specifically, giving love to other people is what matters. Nothing else carries the same weight or the same meaning. Nothing else communicates more clearly what we all want to know. That we are loved, and that we are taken care of, and that somebody cares about us and that it is all connected and it all matters.
So, this is a thank you note, the first of many. To those people who have reached out to support me. There are so many of you. Friends, and friends of friends, and people I haven't talked to in years, and co-workers, and family, and friends of family. And my own brothers, who are the most amazing people I know. And my mom and my dad who are taking the best care of me that anyone could. And every single person who has said or done or expressed anything to me about this. You are what matters, and you are what will get me through this alive and healthy and striving.
I've received so many cards, and notes, and messages, and phone calls, and gifts of food and movies and games and anything you can think of to distract me from this miserable thing I'm going through. But the thing I appreciate is just the love behind these actions, just the thought of supporting me. It makes me cry every day when someone reaches out with another message of love and support. I can't help it, it's overwhelming. As overwhelming as this experience is, the love I'm receiving from all of you is more powerful than that. And THAT is what matters, that is the healing energy I need. And when I'm laying in bed at 2:30 in the morning and I can't sleep and I feel like I'm going to throw up, someone else is reaching out to me to let me know I'm loved and it pulls me through.
The point is, thank you, from the bottom of my heart. To everyone who I know, because I love all of you, and I feel the love and support from all of you. No matter how it's expressed, no matter how it might be received, it is saving my life.
And what's even more exciting to me than all of this, is the idea that someday I may be able to repay this kindness with kindness of my own. When I contemplate that I know my life has changed forever. And dire as this sounds, even if it were to end tomorrow my life still would have been changed forever by all of you. And that blows my mind, and touches my heart in a way that I simply cannot express to you in words. Life is about giving, and thanks to you all I know that to be true now. And thanks to you all I now know how to do it.
Love,
Chris
Then something incredible happened. People started reaching out to me who I had forgotten existed, who I hadn't heard from in years, who I had completely disconnected from or lost touch with or otherwise had faded from my life. And my close friends reached out too, and my family near and far, and other people who I had been longing to be close to contacted or visited or just let me know they were there for me. And it became so clear to me, this is what's important in life. Relationships are what matters. More specifically, giving love to other people is what matters. Nothing else carries the same weight or the same meaning. Nothing else communicates more clearly what we all want to know. That we are loved, and that we are taken care of, and that somebody cares about us and that it is all connected and it all matters.
So, this is a thank you note, the first of many. To those people who have reached out to support me. There are so many of you. Friends, and friends of friends, and people I haven't talked to in years, and co-workers, and family, and friends of family. And my own brothers, who are the most amazing people I know. And my mom and my dad who are taking the best care of me that anyone could. And every single person who has said or done or expressed anything to me about this. You are what matters, and you are what will get me through this alive and healthy and striving.
I've received so many cards, and notes, and messages, and phone calls, and gifts of food and movies and games and anything you can think of to distract me from this miserable thing I'm going through. But the thing I appreciate is just the love behind these actions, just the thought of supporting me. It makes me cry every day when someone reaches out with another message of love and support. I can't help it, it's overwhelming. As overwhelming as this experience is, the love I'm receiving from all of you is more powerful than that. And THAT is what matters, that is the healing energy I need. And when I'm laying in bed at 2:30 in the morning and I can't sleep and I feel like I'm going to throw up, someone else is reaching out to me to let me know I'm loved and it pulls me through.
The point is, thank you, from the bottom of my heart. To everyone who I know, because I love all of you, and I feel the love and support from all of you. No matter how it's expressed, no matter how it might be received, it is saving my life.
And what's even more exciting to me than all of this, is the idea that someday I may be able to repay this kindness with kindness of my own. When I contemplate that I know my life has changed forever. And dire as this sounds, even if it were to end tomorrow my life still would have been changed forever by all of you. And that blows my mind, and touches my heart in a way that I simply cannot express to you in words. Life is about giving, and thanks to you all I know that to be true now. And thanks to you all I now know how to do it.
Love,
Chris
Friday, July 13, 2012
Big Understanding
I'm not sure that I've really shared the scope of my disease with you all so far. Actually it is just now becoming clear to me how big and serious it is. The diagnosis I have is Stage 4 Acute Lymphoblastic Lymphoma. Some of the literature I've read about ALL suggest that they don't really do 'staging' with this disease. I'm not sure why that is. But Stage 4 basically means that the cancer was present throughout my entire lymphatic system, on both sides of my diaphragm (up and down). Stage 4 is as advanced as cancer gets. Let me tell you a little story.
When I finally decided to go to the doctor I was fully ready. I knew it was necessary, I knew I was sick and that I needed help and I was fully prepared to get that help, whatever it would be. So in a way I'm glad I waited as long as I did. I'm stubborn, I guess, and I thought before that my body would heal itself. And I gave it as much of a chance to do so as I could, and then gave in. That's how it played out. I don't regret it, it was just how it needed to be for me.
So I finally go to the doctor, and I tell them I'm having trouble breathing, and I'm sick to my stomach a lot, and I have been that way and getting worse for a while (two-three months). And the doc taps around my chest a bit and says, ok let's do a chest xray and see what we can see.
So we do a chest xray, and he's gone from the room, and I'm just sitting there waiting. Waiting so I can get back to work and get on with my day (I have a lot to do here!). And he comes in and he is concerned. I can tell right away. And one of the first things out of his mouth is the phrase Hodgkin's lymphoma. And I'm like, what.
No really, I knew I was sick. I knew I was losing weight and I looked bad and I was weak and I couldn't breathe, but what the fuck dude. Cancer?!?!?
He says, let me call a radiologist and have them look, but it looks like Hodgkin's on the xray.
Radiologist confirms what he sees. And the doc sends me home. He says, let me call Rocky Mountain Cancer, get some feedback, and I'll call you this afternoon.
So I go to work, and go about my day, and that afternoon I get a call from the doc and he says:
You need to go to the hospital as soon as you can, like tonight even. And you need to go check in to the emergency room and let them take care of you. Right away.
Holy fucking shit.
So I call my Dad, and I call my boss's boss (my boss is out of town on vacation). And I tell them what's going on, and I tell them I need to go to the hospital and that I'm going first thing in the morning.
And amazing things start happening. My director is basically the MOST supportive person on the planet. She says, my husband had cancer, don't worry, go get well, don't think about work, just go get well and we'll take care of everything. Um, amazing.
And my dad, my poor dad who is part of my poor amazing loving family who are still blown away in shock by this (as I still am), comes up that night and we go to dinner and we're like, ok. Let's see what happens.
On the way to the hospital the next morning I stop back by the clinic where I had the chest xray and the guy shows me the image, and I can see this huge glob of crap above my heart. He shows me a normal xray and he shows me mine, and it looks pretty bad. And his colleague there says to me, 'This guy just saved your life.' And I'm like, really? That's fucking crazy. But the thing is, it's true. This doctor, his name is Jeremy Wilson, he saved my life. Him and a whole slew of other people at the hospital including my oncologist who is still saving my life and fighting for me every day.
There's a lot more to this tale, but that's how I ended up learning about the cancer and going to the hospital in the first place. Talk about unexpected!
However, there are some positive take-aways so far that I also wanted to share with you.
The initial round of chemotherapy I underwent has already had profound positive effects. The size of the mass in my chest has been vastly reduced. I can breath normally again. The only real suffering I'm experiencing is this on-going nausea issue, and trouble eating/keeping my weight up. But that seems to be standard cancer/chemotherapy stuff. After this next round of treatments that starts on Monday they will do another CT scan with oral contrast and will get a really clear picture of where the cancer is throughout my body at that point. As of now I am hopeful that it will disappearing fast.
However, I do have to be realistic about this. There are some sobering things I came across yesterday.
First of all, the disease I have has about a 50% survival rate. I know I can survive it, but that's the number. Second, I will almost certainly lose my fertility from going through the high-dose, high-intensity chemotherapy they're giving me. So the likelihood of me every having my own kids is very very low. Also, while the treatments I'm going through may be effective, they also may not be. And even if they are I may still need things like a bone marrow transplant, and other on-going types of procedures. In short, this could drag on for a long long time.
My work has been incredibly supportive. And my hope is that I can go back to work, even part time, sometime soon. But I don't know for sure how this will play out. And I could be incapacitated for a longer time that I was thinking. I guess the point of all this is, I don't know what's going to happen. Not now any more than I did the day I went to the doctor's office for the first time.
So I'm taking it one day at a time, one meal at a time. One interaction at a time. And I'm going to be as present and strong as I can be. I'm going to maintain my goal of being healthy and happy and successful, and getting back to my life. And I'm going to let things unfold, because honestly, what choice do we have? We're not in control as much as we'd like to think we are. We just aren't.
Thanks for the continued support. Keep it coming. This transformation needs all the love it can get.
Love
Chris
When I finally decided to go to the doctor I was fully ready. I knew it was necessary, I knew I was sick and that I needed help and I was fully prepared to get that help, whatever it would be. So in a way I'm glad I waited as long as I did. I'm stubborn, I guess, and I thought before that my body would heal itself. And I gave it as much of a chance to do so as I could, and then gave in. That's how it played out. I don't regret it, it was just how it needed to be for me.
So I finally go to the doctor, and I tell them I'm having trouble breathing, and I'm sick to my stomach a lot, and I have been that way and getting worse for a while (two-three months). And the doc taps around my chest a bit and says, ok let's do a chest xray and see what we can see.
So we do a chest xray, and he's gone from the room, and I'm just sitting there waiting. Waiting so I can get back to work and get on with my day (I have a lot to do here!). And he comes in and he is concerned. I can tell right away. And one of the first things out of his mouth is the phrase Hodgkin's lymphoma. And I'm like, what.
No really, I knew I was sick. I knew I was losing weight and I looked bad and I was weak and I couldn't breathe, but what the fuck dude. Cancer?!?!?
He says, let me call a radiologist and have them look, but it looks like Hodgkin's on the xray.
Radiologist confirms what he sees. And the doc sends me home. He says, let me call Rocky Mountain Cancer, get some feedback, and I'll call you this afternoon.
So I go to work, and go about my day, and that afternoon I get a call from the doc and he says:
You need to go to the hospital as soon as you can, like tonight even. And you need to go check in to the emergency room and let them take care of you. Right away.
Holy fucking shit.
So I call my Dad, and I call my boss's boss (my boss is out of town on vacation). And I tell them what's going on, and I tell them I need to go to the hospital and that I'm going first thing in the morning.
And amazing things start happening. My director is basically the MOST supportive person on the planet. She says, my husband had cancer, don't worry, go get well, don't think about work, just go get well and we'll take care of everything. Um, amazing.
And my dad, my poor dad who is part of my poor amazing loving family who are still blown away in shock by this (as I still am), comes up that night and we go to dinner and we're like, ok. Let's see what happens.
On the way to the hospital the next morning I stop back by the clinic where I had the chest xray and the guy shows me the image, and I can see this huge glob of crap above my heart. He shows me a normal xray and he shows me mine, and it looks pretty bad. And his colleague there says to me, 'This guy just saved your life.' And I'm like, really? That's fucking crazy. But the thing is, it's true. This doctor, his name is Jeremy Wilson, he saved my life. Him and a whole slew of other people at the hospital including my oncologist who is still saving my life and fighting for me every day.
There's a lot more to this tale, but that's how I ended up learning about the cancer and going to the hospital in the first place. Talk about unexpected!
However, there are some positive take-aways so far that I also wanted to share with you.
The initial round of chemotherapy I underwent has already had profound positive effects. The size of the mass in my chest has been vastly reduced. I can breath normally again. The only real suffering I'm experiencing is this on-going nausea issue, and trouble eating/keeping my weight up. But that seems to be standard cancer/chemotherapy stuff. After this next round of treatments that starts on Monday they will do another CT scan with oral contrast and will get a really clear picture of where the cancer is throughout my body at that point. As of now I am hopeful that it will disappearing fast.
However, I do have to be realistic about this. There are some sobering things I came across yesterday.
First of all, the disease I have has about a 50% survival rate. I know I can survive it, but that's the number. Second, I will almost certainly lose my fertility from going through the high-dose, high-intensity chemotherapy they're giving me. So the likelihood of me every having my own kids is very very low. Also, while the treatments I'm going through may be effective, they also may not be. And even if they are I may still need things like a bone marrow transplant, and other on-going types of procedures. In short, this could drag on for a long long time.
My work has been incredibly supportive. And my hope is that I can go back to work, even part time, sometime soon. But I don't know for sure how this will play out. And I could be incapacitated for a longer time that I was thinking. I guess the point of all this is, I don't know what's going to happen. Not now any more than I did the day I went to the doctor's office for the first time.
So I'm taking it one day at a time, one meal at a time. One interaction at a time. And I'm going to be as present and strong as I can be. I'm going to maintain my goal of being healthy and happy and successful, and getting back to my life. And I'm going to let things unfold, because honestly, what choice do we have? We're not in control as much as we'd like to think we are. We just aren't.
Thanks for the continued support. Keep it coming. This transformation needs all the love it can get.
Love
Chris
Wednesday, July 11, 2012
The Fight Begins
I never understood why people were 'fighting' cancer. It seemed like such a violent idea to me. But the truth is, when you have cancer, you have to fight against it. It's a struggle on every level for your life and your health and the well-being and integrity of your body. I'm realizing now how hard it is.
I've lost a lot of weight. I was always thin, but right now I weight 125 pounds. Im 6'2", so I'm basically vastly underweight. So right now, the battle for me is to eat, even though I have no appetite and I'm sick to my stomach all the time. It's really a lot harder psychologically that I would have thought. It's a fight. And this morning I officially declared war against my cancer and am waging this battle for my life.
I guess it's another piece of this whole experience that is becoming clear. When things change so drastically it can take some time to adjust. I've always been pretty adaptable, so I'm well suited to change. That's just how I am. But this is on a scope that no one can be prepared for, nor should they right?
So, join me. Fight with me. Help me to win. I've had a lot of support and encouragement already. Keep it coming, it helps strengthen me in this conflict. I've never had to battle hard for anything. I've always learned easily, adapted easily, sought out those things that I enjoyed that came easily. So this is a big shift in how I approach my life. It's no longer a coast, it's an uphill climb. I'm no longer able to hit cruise control and let the road take me where it may. I have to drive this boat now and I have to drive it against the current. It brings up a lot of fears for me. I've always been afraid of strong currents in the ocean and water and all that. But this is life. It can be scary and it definitely isn't always easy.
I want to live. I want to play and to enjoy and to relax and to be with the people I love. I want it so bad. So I'm going to do it. I'm going to gain weight back, and help my body to beat this bizarre thing that's happening to it. I'm going to fight as hard as I can and I'm going to win.
I've lost a lot of weight. I was always thin, but right now I weight 125 pounds. Im 6'2", so I'm basically vastly underweight. So right now, the battle for me is to eat, even though I have no appetite and I'm sick to my stomach all the time. It's really a lot harder psychologically that I would have thought. It's a fight. And this morning I officially declared war against my cancer and am waging this battle for my life.
I guess it's another piece of this whole experience that is becoming clear. When things change so drastically it can take some time to adjust. I've always been pretty adaptable, so I'm well suited to change. That's just how I am. But this is on a scope that no one can be prepared for, nor should they right?
So, join me. Fight with me. Help me to win. I've had a lot of support and encouragement already. Keep it coming, it helps strengthen me in this conflict. I've never had to battle hard for anything. I've always learned easily, adapted easily, sought out those things that I enjoyed that came easily. So this is a big shift in how I approach my life. It's no longer a coast, it's an uphill climb. I'm no longer able to hit cruise control and let the road take me where it may. I have to drive this boat now and I have to drive it against the current. It brings up a lot of fears for me. I've always been afraid of strong currents in the ocean and water and all that. But this is life. It can be scary and it definitely isn't always easy.
I want to live. I want to play and to enjoy and to relax and to be with the people I love. I want it so bad. So I'm going to do it. I'm going to gain weight back, and help my body to beat this bizarre thing that's happening to it. I'm going to fight as hard as I can and I'm going to win.
Monday, July 9, 2012
Discharged home
Being discharged from the hospital was an emotional experience for me. When I checked in I thought I would be there for a few days, and that turned into two and a half weeks. I didn't know my life would change so drastically when I went there. And there are so many things up in the air now, unknowns. I don't even know how I'm going to feel each day, if I'll be able to eat, drink. I've had a lot of issues with nausea, and they did an MRI this afternoon to rule out problems with my brain. I don't even know the results of the scan, but my doc decided to let me go home anyway.
I can't tell you how it feels. Like I've started a new life, but I don't know what it means or what it's made up of yet. But I do know that I am so grateful to everyone who has helped me, who has shown me any kind of love or support or attention. Anyone who has reached out to me in any way, and there have been a lot of you. I received amazing care at the hospital and I wish I could do more to thank the staff who have taken care of me. I'm sure as this develops I'll be able to work out some ways to show my gratitude.
I don't have much energy now. I feel really tired and worn out and like I could sleep for a week.
Being in the hospital sucks, and I'm not looking forward to going back in a week. But it's the way it is and I'm happy I'll be able to move forward with this process.
More to come soon.
Love to all of you,
Chris
I can't tell you how it feels. Like I've started a new life, but I don't know what it means or what it's made up of yet. But I do know that I am so grateful to everyone who has helped me, who has shown me any kind of love or support or attention. Anyone who has reached out to me in any way, and there have been a lot of you. I received amazing care at the hospital and I wish I could do more to thank the staff who have taken care of me. I'm sure as this develops I'll be able to work out some ways to show my gratitude.
I don't have much energy now. I feel really tired and worn out and like I could sleep for a week.
Being in the hospital sucks, and I'm not looking forward to going back in a week. But it's the way it is and I'm happy I'll be able to move forward with this process.
More to come soon.
Love to all of you,
Chris
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