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.
Sunday, July 29, 2012
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
Saturday, July 7, 2012
Round 1, Day 13
My chemotherapy.
It works like this. I have 8 rounds of treatment, each three weeks long (for a total of 24 weeks, or about 6 months total). My first round officially started almost two weeks ago now, on Monday, June 25. So that means today is Day 13.
Here's how they breakdown. I have two courses of treatment that will alternate each round.
So Course 1 will be rounds 1, 3, 5, and 7, while Course 2 will be rounds 2, 4, 6, and 8.
Course 1 has about five different major drugs, and course 2 has maybe three or four.
Each round breaks down about the same in terms of time it takes to administer the drugs.
For each round I will have to be in the hospital for a few days from about Day 1-3 or 4. Then I'll have more treatments the second week, like Days 8 and 11 mostly, that may be more of an outpatient thing.
So each three week period I'll spend a few days admitted to the hospital getting a bunch of IV drugs, and then I'll have a break of a few days, and then I'll go back and get more drugs the next week. And then the third week I'll be pretty much out.
Based on my experience so far, the side effects of the chemotherapy drugs are super strong. I've had a lot of pretty extreme nausea, some good old fashioned vomiting, and lots of general pain and discomfort. However, I've also been recovering from surgery and from being intubated/on a ventilator for three days, and having drainage tubes in each of my sides and my heart, and having some other various intense crap done to me. So it's really hard to tell how subsequent rounds will feel.
I'm hoping at this point that much of the discomfort will be relegated to nausea and that a lot of the other pain and stuff won't be a factor. Chemotherapy isn't really supposed to hurt. But it definitely doesn't feel good! Who knows, I'll find out here pretty quickly.
The fact that I'm writing about getting chemo is a little surreal. Part of what I've learned so far is that there are way more people going through this than I would have realized. And that there are way more people I know who have gone through this or may be be doing so currently, than I imagined. It makes me feel like I was really shut off from the people in my life! But I'm also really grateful not to be so shut off any more. I've had a chance to start to connect with some people already, just by them coming by to visit or reaching out to me. And those relationships are what's making this bearable and making it ok. So thank you to those people, and I am looking forward to more of that. There's nothing I want more!
I'll leave you with one more note. My hair was already starting to fall out pretty fast. A bunch came off when I washed it yesterday, and I woke up with it all over my pillow this morning. After showering this afternoon tons more came out, and I realized it was going to be a huge mess. So this evening I buzzed my head really short. It looks a lot different than I expected it to. I've always wondered what I would look like with no/short hair, and my head is actually pretty round! Who knew. Anyway, I'll post a photo or something and those of you who know us both will see that I look even more like my little brother Greg than before. Let me know if you have questions for me.
Love,
Chris
It works like this. I have 8 rounds of treatment, each three weeks long (for a total of 24 weeks, or about 6 months total). My first round officially started almost two weeks ago now, on Monday, June 25. So that means today is Day 13.
Here's how they breakdown. I have two courses of treatment that will alternate each round.
So Course 1 will be rounds 1, 3, 5, and 7, while Course 2 will be rounds 2, 4, 6, and 8.
Course 1 has about five different major drugs, and course 2 has maybe three or four.
Each round breaks down about the same in terms of time it takes to administer the drugs.
For each round I will have to be in the hospital for a few days from about Day 1-3 or 4. Then I'll have more treatments the second week, like Days 8 and 11 mostly, that may be more of an outpatient thing.
So each three week period I'll spend a few days admitted to the hospital getting a bunch of IV drugs, and then I'll have a break of a few days, and then I'll go back and get more drugs the next week. And then the third week I'll be pretty much out.
Based on my experience so far, the side effects of the chemotherapy drugs are super strong. I've had a lot of pretty extreme nausea, some good old fashioned vomiting, and lots of general pain and discomfort. However, I've also been recovering from surgery and from being intubated/on a ventilator for three days, and having drainage tubes in each of my sides and my heart, and having some other various intense crap done to me. So it's really hard to tell how subsequent rounds will feel.
I'm hoping at this point that much of the discomfort will be relegated to nausea and that a lot of the other pain and stuff won't be a factor. Chemotherapy isn't really supposed to hurt. But it definitely doesn't feel good! Who knows, I'll find out here pretty quickly.
The fact that I'm writing about getting chemo is a little surreal. Part of what I've learned so far is that there are way more people going through this than I would have realized. And that there are way more people I know who have gone through this or may be be doing so currently, than I imagined. It makes me feel like I was really shut off from the people in my life! But I'm also really grateful not to be so shut off any more. I've had a chance to start to connect with some people already, just by them coming by to visit or reaching out to me. And those relationships are what's making this bearable and making it ok. So thank you to those people, and I am looking forward to more of that. There's nothing I want more!
I'll leave you with one more note. My hair was already starting to fall out pretty fast. A bunch came off when I washed it yesterday, and I woke up with it all over my pillow this morning. After showering this afternoon tons more came out, and I realized it was going to be a huge mess. So this evening I buzzed my head really short. It looks a lot different than I expected it to. I've always wondered what I would look like with no/short hair, and my head is actually pretty round! Who knew. Anyway, I'll post a photo or something and those of you who know us both will see that I look even more like my little brother Greg than before. Let me know if you have questions for me.
Love,
Chris
Friday, July 6, 2012
Independence Day, 2012
Hello, my name is Chris. It's Independence Day 2012 and this is the first entry in a new weblog I'm writing about my experience with Cancer. Tonight I'm sitting in the hospital in Westminster, Colorado receiving the first blood transfusion of my life. The patient ID bracelet on my left wrist says the following:
Dawson, Christopher David
Sx: M
DOB: 10/19/1982
Age: 29
Admit Date: 06/21/12
It's a Wednesday. Which is really a perfect day for the Fourth of July because you can maximize your vacation time around it. I had planned to take the second part of the week off, head up to the mountains for some camping to escape the record heat we're having, and breathe some cool, thin air into my lungs. Turns out life had some other ideas in mind for this weekend.
When I was first diagnosed with cancer, two weeks ago, I had been feeling sick in one way or another for the previous several months. Being a naturally healthy and active person I had managed to develop a general disinterest in the need for doctors in my life, and so had been avoiding going to see one as if my life depended on it. It turns out, it did. I got a chest x-ray and they found a large mass (tumor type of thing) in my left chest above my heart. It had grown around my wind pipe down in my chest making it hard for me to breath and causing a number of other problems. They suggested I to the hospital right away. So I checked in the next morning.
Dawson, Christopher David
Sx: M
DOB: 10/19/1982
Age: 29
Admit Date: 06/21/12
It's a Wednesday. Which is really a perfect day for the Fourth of July because you can maximize your vacation time around it. I had planned to take the second part of the week off, head up to the mountains for some camping to escape the record heat we're having, and breathe some cool, thin air into my lungs. Turns out life had some other ideas in mind for this weekend.
When I was first diagnosed with cancer, two weeks ago, I had been feeling sick in one way or another for the previous several months. Being a naturally healthy and active person I had managed to develop a general disinterest in the need for doctors in my life, and so had been avoiding going to see one as if my life depended on it. It turns out, it did. I got a chest x-ray and they found a large mass (tumor type of thing) in my left chest above my heart. It had grown around my wind pipe down in my chest making it hard for me to breath and causing a number of other problems. They suggested I to the hospital right away. So I checked in the next morning.
The basic details of my diagnosis, called Adult Acute Lymphoblastic Lymphoma (ALL), are rather clear for my having learned of my
disease just two weeks ago. But I'm still waiting to learn more, to get additional opinions on my labs and specimens and test results. Right now I'm just in this early learning, reacting, absorbing, phase, but I'm also deep into the first round of treatment of my cancer. So I'm having to adjust in many ways at once. Things have happened fast. But I want to start writing things down as they go so I can record this and also keep some of the people I care about up to date.
Much more to come.
Much more to come.
Much Love,
Chris
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