One year ago yesterday I began the maintenance chemotherapy treatment that I am still undergoing today. This regimen is designed to prevent the cancer that I had from returning, and it is supposed to last two and a half years.
When I started maintenance I had been told all along that it would last for one and a half years. So the news that it would be 2.5 came as quite a shock to me. My doctor tempered this news with the idea that not everyone completes all of the maintenance therapy. Typically there are elements that individuals don't go through with, for whatever reason. For me this has already turned out to be the case. Originally I was prescribed two pills to take on a regular basis, but one of those drugs absolutely did not work for me, so now I don't take that one at all. Still, I was facing 2.5 years of continued chemo, and that prospect was horrifying to me when I first found out.
Today I have completed the first year of maintenance. The remaining time seems long to me still, but it is much less daunting. I've figured out what to expect, how to manage the side effects of the drugs I have to take, and those two things have helped me to cope much better with the process. I definitely have challenges with the treatment. The drugs make me tired, disoriented, foggy. It can be hard to focus at times, and I feel the effects of the pills I take each week. But it is manageable for me now.
One of the hardest things for me has been the concept that I have to put any sort of physical goals on hold. Previous to my diagnosis I was a very focused rock climber, and I had a set of objectives I had identified for myself that I was working to accomplish. I have had to set that kind of thing aside, instead focusing on just making my life work for me day to day. It's a psychological challenge, but then, much of the difficulty with cancer is psychological. It's hard to balance my desire to get in better shape and to work toward physical goals that I have with the need to simply make it through, and with the reality that on a weekly basis I am doing things that actually inhibit my ability to reach any such goals. Mostly it's frustrating, but only in moments. Often I will get back in touch with the feelings of appreciation for any and all experiences that I get to have now, and that perspective is comforting.
That first week of maintenance treatment a year ago was a nightmare. One of the drugs I started taking caused me quite a bit of pain. My doctor had told me that the maintenance would be easy, that I would be able to work and live my day to day life without any real trouble. So when that first week proved to be so difficult I wasn't even sure it was the chemo that was causing me pain. I started taking much higher doses of the pain medication I had been on. I was curled up in a ball in my bed, scared and confused, starting to wonder if I would ever feel better again. When Thanksgiving came around I was so sick that I could barely sit at the table. I remember taking a few bites of food and then heading back to bed. It was definitely one of the worst weeks I had.
But I made it through all of that. And to reflect on how far I've come in the past year is an amazing thing for me. It seems like another lifetime, the memory of feeling so ill and so frail feels like a distant past. I've gotten stronger, I've returned to my life, and I've been able to enjoy so much during this year. Life is indeed a beautiful experience. I believe that without any reservation. Despite the challenges, often because of them, there is so much opportunity to appreciate and enjoy the things we get to do, to see and feel, and share with each other. A year ago I was thankful just to have survived the previous several months, to even be alive. Now I am thankful for that, and for so much more. I'm excited for the next year of my life. Denise and I are planning to get married next fall. There are amazing opportunities for achievement, fulfillment, and fun in my work and play in the next year. I'm filled with joy and appreciation when I think of the support I've received from so many of you out there. It's a group effort, this thing we call life. And we're in that boat together, so thank you for helping me pull the oars this past year.
Before I sign off, I wanted to share with you that I am beginning a process of interviewing people who have survived cancer about their spiritual beliefs and the impact that cancer has had on them. It's a topic I've grown interested in over the past months as I've reflected on my own experiences. My intention is simply to find out whether having cancer has influenced people's perspective on spirituality or not, and to learn the various ways that has developed for each person. I'm not sure yet of the scope of my efforts. But I would like to reach as many people as I can, gather their experiences, and then go from there. So if you or anyone you know has cancer or has lived through cancer and might be interested in sharing their thoughts on this topic with me please reach out to me! I have a list of questions I will be happy to share.
Happy Thanksgiving to you, and to your families and loved ones.
Love,
Chris
Tuesday, November 26, 2013
Monday, September 16, 2013
Floods
Ok, it's been ten weeks since my last update, so I'm way past due. I've been meaning to write something for a while now, but just haven't made it happen. The short version, for those of you who don't like delayed gratification, is that all is well with me. No real cancer-related news in fact, since the last time I wrote. I'm still plugging away with maintenance chemotherapy. Still taking pills each week, shot once per month. Haven't had a scan since spring, so nothing new to report, which of course is a good thing.
I've written a lot about how taking chemotherapy drugs has affected me. Physically, psychologically, in terms of my mood. I've talked about this feeling I've had that my life is on hold until I'm finished with chemo. I think that over the past several weeks I've been struggling a bit with some of those thoughts and feelings. It's tough for me to think about clearly because I don't have a good perspective on it yet. I feel like I'm still right in the middle of working through it all. But the gist is something along the lines of, all this cancer shit is making me feel depressed.
I have pretty significant swings in my mood and in my attitude about my situation. Some days I feel strong, like I could take on anything. Other days I feel defeated and tired and I just want to be able to move on to something else. This is something I've never faced before in my life (another in a long string of 'new' experiences for me related to having cancer); the reality of a prolonged physical and emotional challenge that lasts not just months, but years.
I've noticed as well that all of this can be difficult for me to actually talk about. I think about it a lot. I have all of these things flying around in my head. And I sort of forget that I haven't actually expressed them out loud. Or I'm not sure what to say about them. Writing about what I'm feeling has been helping me along the way with all of this. But now I'm writing less frequently because I'm more engaged with my normal life than I was before, and there are fewer things to report about my situation related to cancer. So, and I'm thinking through this as I write it, I maybe need to seek out someone to talk to, an impartial third party in this relationship between me and cancer. I think it would help me a lot. They have resources through the cancer clinic I go to, so maybe I'll go that route. If you know anyone who is a fabulous counselor for cancer patients feel free to send me their name.
Anyway, it's a tough thing. Not knowing what's going to happen. Not knowing why I feel the way I feel at any given time. Is it some symptom of returning cancer? Is my body too weak? Should I not have eaten that thing, or should I have eaten some other thing than what I ate? Am I too detached? Am I too preoccupied with all of this to the point that it's inhibiting my ability to be well? Why am I sick, yet again? Am I doing something wrong? Will I be able to live with myself if the decisions I'm making don't prevent my cancer from coming back? It can get overwhelming pretty quickly, all of the anxiety. It's perhaps akin to the amazingly catastrophic flooding we've had over the past week in Colorado (which, by the way, we are entirely safe from. Though many have lost their homes and continue to endure terrible and drastic challenges. My heart goes out to them all). It just comes out of nowhere and there's way too much of it to handle.
I still feel extremely fortunate. To have survived the past year. To be able to share continuing good news with you. Though I am still struggling with the feeling that my life is on hold. I can't know the outcome yet. I think the reality that I need to accept is simply that the outcome is not something we get to know ahead of time, ever. It's just a scary thing in this context I suppose.
On a personal note, I am recently engaged to be married (!) to a lovely woman whom some of you know, Denise. I asked her the big question in late July during a trip to visit her family in Vermont. The truth is I'd been wanting to ask her that question for months but I patiently waited for what I felt was the right time - I wanted to be somewhat prepared, you see. And she said yes to me, thankfully. So we're aiming for sometime next autumn, a year or so from now, but no formal date or plans to share yet.
Finally, I've had a lot of feedback, very positive for the most part, regarding this journal I've kept. I just wanted to thank you for following along with me. It means a lot to me, both to know that my journey is shared, for my sake and for others, and that you are supporting me along the way. This web page has now had over 10,000 views since I started writing last July. That's pretty amazing to me. Thanks again, I really love you.
-Chris
I've written a lot about how taking chemotherapy drugs has affected me. Physically, psychologically, in terms of my mood. I've talked about this feeling I've had that my life is on hold until I'm finished with chemo. I think that over the past several weeks I've been struggling a bit with some of those thoughts and feelings. It's tough for me to think about clearly because I don't have a good perspective on it yet. I feel like I'm still right in the middle of working through it all. But the gist is something along the lines of, all this cancer shit is making me feel depressed.
I have pretty significant swings in my mood and in my attitude about my situation. Some days I feel strong, like I could take on anything. Other days I feel defeated and tired and I just want to be able to move on to something else. This is something I've never faced before in my life (another in a long string of 'new' experiences for me related to having cancer); the reality of a prolonged physical and emotional challenge that lasts not just months, but years.
I've noticed as well that all of this can be difficult for me to actually talk about. I think about it a lot. I have all of these things flying around in my head. And I sort of forget that I haven't actually expressed them out loud. Or I'm not sure what to say about them. Writing about what I'm feeling has been helping me along the way with all of this. But now I'm writing less frequently because I'm more engaged with my normal life than I was before, and there are fewer things to report about my situation related to cancer. So, and I'm thinking through this as I write it, I maybe need to seek out someone to talk to, an impartial third party in this relationship between me and cancer. I think it would help me a lot. They have resources through the cancer clinic I go to, so maybe I'll go that route. If you know anyone who is a fabulous counselor for cancer patients feel free to send me their name.
Anyway, it's a tough thing. Not knowing what's going to happen. Not knowing why I feel the way I feel at any given time. Is it some symptom of returning cancer? Is my body too weak? Should I not have eaten that thing, or should I have eaten some other thing than what I ate? Am I too detached? Am I too preoccupied with all of this to the point that it's inhibiting my ability to be well? Why am I sick, yet again? Am I doing something wrong? Will I be able to live with myself if the decisions I'm making don't prevent my cancer from coming back? It can get overwhelming pretty quickly, all of the anxiety. It's perhaps akin to the amazingly catastrophic flooding we've had over the past week in Colorado (which, by the way, we are entirely safe from. Though many have lost their homes and continue to endure terrible and drastic challenges. My heart goes out to them all). It just comes out of nowhere and there's way too much of it to handle.
I still feel extremely fortunate. To have survived the past year. To be able to share continuing good news with you. Though I am still struggling with the feeling that my life is on hold. I can't know the outcome yet. I think the reality that I need to accept is simply that the outcome is not something we get to know ahead of time, ever. It's just a scary thing in this context I suppose.
On a personal note, I am recently engaged to be married (!) to a lovely woman whom some of you know, Denise. I asked her the big question in late July during a trip to visit her family in Vermont. The truth is I'd been wanting to ask her that question for months but I patiently waited for what I felt was the right time - I wanted to be somewhat prepared, you see. And she said yes to me, thankfully. So we're aiming for sometime next autumn, a year or so from now, but no formal date or plans to share yet.
Finally, I've had a lot of feedback, very positive for the most part, regarding this journal I've kept. I just wanted to thank you for following along with me. It means a lot to me, both to know that my journey is shared, for my sake and for others, and that you are supporting me along the way. This web page has now had over 10,000 views since I started writing last July. That's pretty amazing to me. Thanks again, I really love you.
-Chris
Monday, July 1, 2013
One Year
A year ago on June 21 I was diagnosed with Acute Lymphoblastic Lymphoma. The day before I had gone to the doctor, had a chest x-ray, and had learned that I probably had cancer. What followed was a complete reset of my life.
I've learned a lot over the past year. For instance, I previously had a very limited awareness of just how many people are affected by cancer. I had always assumed it was a disease that mostly older people dealt with. And while it's probably true that a majority of cancer patients are older, it's amazing how many people of all ages deal with various forms of cancer. I had no idea what it was like to have real health problems. To spend extended amounts of time in the hospital, or being sick. To be a patient.
I can't say for sure but my guess is that it had been at least five years since I'd been to see a doctor when I went that day a year ago. I had pretty much convinced myself I didn't need them. I figured (naively) that my body was capable of fighting off whatever infections or viruses I might contract. And I never imagined that it was possible that I would get cancer. I don't really like the term 'get cancer'. That makes it sound like something I picked up at the corner supermarket. "I'll be back in a few honey, just gonna run down to the store and get some cancer, you need anything?" I think it's the fact that I have no clue why or how I ended up getting it that makes that sound somewhat off to me. But I don't really know how else to say it, so we can go with that.
I've had a lot of support over the past year. First and foremost I have to thank my parents. My mom quit her job to take care of me when I got sick. Isn't that amazing? I moved home with my parents and she drove me around, to doctor's appointments, to and from the hospital, to the emergency room in the middle of the night, to get blood transfusions. And let me tell you, I wasn't fun to be around. I felt horrible almost all the time, and I hadn't really learned how to deal with it well. Though I'm not really sure how one would deal with it well. I was grumpy, and short with them, and impossible to please. Nothing tasted good, nothing made me feel good. I didn't want to talk, wanted to be left alone, and was nearly unwilling to explain any of what I was going through at any given time. So thank you Mom and Dad for putting up with me. For taking care of me. And for helping me survive the past year.
Next I want to thank my girlfriend, Denise. When I was diagnosed we weren't together at the time. But she came to visit me, spent time with me at the hospital, and was a true friend, in an unassuming and honest way that cannot be overstated. Thank you for being such an amazing, loving, supportive, and true person in my life Denise, I love you.
I would also like to send a special thank you to my very close friends Tony Cappa and Anna Berkman. When I was ready to move out of my parents' house this past winter they took me into their home and let me stay with them all spring. It was an incredibly comfortable and supportive environment to be in. And it was just what I needed to make the transition back to my life. I am forever indebted to you both. You are absolutely the best of the best and I love you until the end of time.
There is a long list of people who have visited me in the hospital and at home, people who have given me incredible, generous gifts, both material and otherwise. To all of the individuals who have given in so many ways to me over the past year, thank you, from the bottom of my heart. I cannot possibly express how significant you were to me, and to my survival. Because it was, and is, a matter of survival. I love all of you. Friends, family, co-workers. People who I may not even have met in person. I have been blessed with the opportunity to truly understand what it feels like to need the support of others, and you have given your support to me. You are the real reason I am here and thriving today. You gave me all the reasons I needed and more to keep going when I wasn't sure I could any longer. Thank you, thank you, thank you.
I recently had the final of four high dose shots that are a part of the maintenance chemotherapy regimen I'm on. So now I will return back to the low dose oral medication that I was taking all spring. It has been a challenging past couple of months for me. The hardest part of going through this chemo that I've been getting has been trying to function normally while I'm doing it. It's been a challenge for me to think clearly and focus, which has been tough at work. It's been hard to do much physical activity, which has contributed a bit I think to my less-than-ideal overall mood. Sickness and depression seem to go hand in hand, is really the point. Let's just say I'm glad this part is over.
It's definitely a milestone. I've completed a year of treatment. I've lived another year of life, though much of it is pretty hazy to me now. I'm definitely still dealing with chemo, and dealing with the reality of going to the doctor every week and not feeling great at times. But it will be easier now, and I will feel much more normal for a while. And thus far all the tests and scans they've done have revealed no cancer. I don't really know if they use the term remission with lymphoma, but things are definitely going in the right direction. I think the five year mark is the one that you try to shoot for; meaning that once you've survived five years you're determined to have Survived Cancer. But honestly I just want to get through the next year or so and hopefully be done with the treatment part.
I do find it slightly offensive that they call it chemo 'therapy'. Therapy my eye. My bad one. But hey, it's worked for me. And for all those out there who have the cure for cancer in a diet or an herb or a plant from the rainforest, at least take comfort from the fact that chemotherapy can do what it's intended to do. That's not to say that the diet or herb can't or won't help. Every situation is different. Every cancer is different. Just you know, keep it in perspective. And remember that when it comes to survival of any kind there has to be an element of luck - or whatever you prefer to call it.
Which brings me to my final thought for now. A lot is made of the ways in which surviving a near-death experience can change ones life. Specifically I want to share with you this: Life is a gift. Or in other words, life is an opportunity. An opportunity to experience things, to do things, to feel things. Whatever you choose to do, embrace that opportunity. Take advantage of it. Don't assume that life will be a certain way for you, or even that it will be at all. Instead embrace the opportunity to live your life. Be free to experience that life. Enjoy it. And don't forget to give some love to those around you.
Love,
Chris
I've learned a lot over the past year. For instance, I previously had a very limited awareness of just how many people are affected by cancer. I had always assumed it was a disease that mostly older people dealt with. And while it's probably true that a majority of cancer patients are older, it's amazing how many people of all ages deal with various forms of cancer. I had no idea what it was like to have real health problems. To spend extended amounts of time in the hospital, or being sick. To be a patient.
I can't say for sure but my guess is that it had been at least five years since I'd been to see a doctor when I went that day a year ago. I had pretty much convinced myself I didn't need them. I figured (naively) that my body was capable of fighting off whatever infections or viruses I might contract. And I never imagined that it was possible that I would get cancer. I don't really like the term 'get cancer'. That makes it sound like something I picked up at the corner supermarket. "I'll be back in a few honey, just gonna run down to the store and get some cancer, you need anything?" I think it's the fact that I have no clue why or how I ended up getting it that makes that sound somewhat off to me. But I don't really know how else to say it, so we can go with that.
I've had a lot of support over the past year. First and foremost I have to thank my parents. My mom quit her job to take care of me when I got sick. Isn't that amazing? I moved home with my parents and she drove me around, to doctor's appointments, to and from the hospital, to the emergency room in the middle of the night, to get blood transfusions. And let me tell you, I wasn't fun to be around. I felt horrible almost all the time, and I hadn't really learned how to deal with it well. Though I'm not really sure how one would deal with it well. I was grumpy, and short with them, and impossible to please. Nothing tasted good, nothing made me feel good. I didn't want to talk, wanted to be left alone, and was nearly unwilling to explain any of what I was going through at any given time. So thank you Mom and Dad for putting up with me. For taking care of me. And for helping me survive the past year.
Next I want to thank my girlfriend, Denise. When I was diagnosed we weren't together at the time. But she came to visit me, spent time with me at the hospital, and was a true friend, in an unassuming and honest way that cannot be overstated. Thank you for being such an amazing, loving, supportive, and true person in my life Denise, I love you.
I would also like to send a special thank you to my very close friends Tony Cappa and Anna Berkman. When I was ready to move out of my parents' house this past winter they took me into their home and let me stay with them all spring. It was an incredibly comfortable and supportive environment to be in. And it was just what I needed to make the transition back to my life. I am forever indebted to you both. You are absolutely the best of the best and I love you until the end of time.
There is a long list of people who have visited me in the hospital and at home, people who have given me incredible, generous gifts, both material and otherwise. To all of the individuals who have given in so many ways to me over the past year, thank you, from the bottom of my heart. I cannot possibly express how significant you were to me, and to my survival. Because it was, and is, a matter of survival. I love all of you. Friends, family, co-workers. People who I may not even have met in person. I have been blessed with the opportunity to truly understand what it feels like to need the support of others, and you have given your support to me. You are the real reason I am here and thriving today. You gave me all the reasons I needed and more to keep going when I wasn't sure I could any longer. Thank you, thank you, thank you.
I recently had the final of four high dose shots that are a part of the maintenance chemotherapy regimen I'm on. So now I will return back to the low dose oral medication that I was taking all spring. It has been a challenging past couple of months for me. The hardest part of going through this chemo that I've been getting has been trying to function normally while I'm doing it. It's been a challenge for me to think clearly and focus, which has been tough at work. It's been hard to do much physical activity, which has contributed a bit I think to my less-than-ideal overall mood. Sickness and depression seem to go hand in hand, is really the point. Let's just say I'm glad this part is over.
It's definitely a milestone. I've completed a year of treatment. I've lived another year of life, though much of it is pretty hazy to me now. I'm definitely still dealing with chemo, and dealing with the reality of going to the doctor every week and not feeling great at times. But it will be easier now, and I will feel much more normal for a while. And thus far all the tests and scans they've done have revealed no cancer. I don't really know if they use the term remission with lymphoma, but things are definitely going in the right direction. I think the five year mark is the one that you try to shoot for; meaning that once you've survived five years you're determined to have Survived Cancer. But honestly I just want to get through the next year or so and hopefully be done with the treatment part.
I do find it slightly offensive that they call it chemo 'therapy'. Therapy my eye. My bad one. But hey, it's worked for me. And for all those out there who have the cure for cancer in a diet or an herb or a plant from the rainforest, at least take comfort from the fact that chemotherapy can do what it's intended to do. That's not to say that the diet or herb can't or won't help. Every situation is different. Every cancer is different. Just you know, keep it in perspective. And remember that when it comes to survival of any kind there has to be an element of luck - or whatever you prefer to call it.
Which brings me to my final thought for now. A lot is made of the ways in which surviving a near-death experience can change ones life. Specifically I want to share with you this: Life is a gift. Or in other words, life is an opportunity. An opportunity to experience things, to do things, to feel things. Whatever you choose to do, embrace that opportunity. Take advantage of it. Don't assume that life will be a certain way for you, or even that it will be at all. Instead embrace the opportunity to live your life. Be free to experience that life. Enjoy it. And don't forget to give some love to those around you.
Love,
Chris
Wednesday, May 29, 2013
Two Shots and No Beer
Today I had the second of four methotrexate injections I'm getting as part of the next piece of the maintenance chemotherapy regimen I'm on. Along with the methotrexate I will have four asparaginase injections, which apparently involves a pretty painful shot in the old gluteus maximillion. These two injections are supposed to go in tandem, one day after the other, over four weeks. But after I got the first week's dose I had to take the next week off. The side effects are pretty intense for maintenance level chemo. Not as bad as the week in the hospital side effects, but pretty rough when I'm trying to focus on work and function in general.
Despite that I'm going to try to finish these shots up over the next three weeks. After the first ones a couple of weeks ago I not only felt physically bad I was in a terrible mood. I've noticed that chemo has a toxic affect on my personality as well as my body. I get really grumpy and negative and sort of depressed. I'd like to think there is a correlation between my mood and the toxicity of the drugs in my body. And there probably is. But there's probably also a component of just feeling down due to feeling physically bad, and not being able to do all the things I want to do, or would normally do. It's a constant source of frustration. All that adds up to me being salty. I just needed a week off last week, so I talked to my doctor and he was willing to be flexible with me.
I have been avoiding alcohol while I get these higher doses of chemo, and I have to say the timing on that is terrible. The one thing I want to do is relax, to relieve some of the stress of feeling bad. Self-medication in moderation is an underrated thing in my opinion. But my liver is simply too taxed to deal with booze right now. When I was in the hospital I received some reduced doses of chemo due to lower than normal liver function (which of course is due to all of the chemo I've been getting this whole time). And I've noticed that when I have a drink I really don't feel well the next day. So I'm drinks-free, which I have to say always makes me feel like a less fun person. Not to come across as a lush - I'm nothing of the sort - but the social aspect of having a beer with my friends is something I enjoy, and dearly miss at the moment.
We all have whatever challenges we're dealing with. Some issue we can complain about or identify as being less than ideal. And we also have the opportunity to look at things the other way. To see the positive side of our situation, whatever that may be. For me it's much more difficult to be in a positive frame of mind when I'm getting chemotherapy. But when I have some time away from it, even if it's just a week off, like I had last week, I typically shift back to a more positive place. I remember that there are much worse situations I could be in. And I remember that I'm blessed to be in any type of situation at all.
It's tough to gear up for these bouts of treatment, so I do my best not to think about it most of the time. I don't mind talking about it, but moment to moment I find I'm less stressed out if it's not hovering around in my mind. Because when I get these shots and I feel like total crap for several days, it's hard to remember that things are going well, and that I'm really lucky to be here and to be making such good progress. Everything takes on a darker hue and I get that old familiar feeling of helplessness and isolation. It's a difficult thing to express to others. It's easy to relate to the idea of it, but not as much to the reality of it. My brain gets really fuzzy and I have a hard time thinking about anything in the clear way I'm used to. And that brings on anxiety and depression. Like I said, we all have our challenges, and that one stands pretty tall in front of me during those times.
It helps to write about it. It's less of a burden on others, and on our interactions. You can read what I'm going through, and understand it perhaps better than if I tried to explain it in person. I can get it off my chest. Sometimes it's pretty scary, or maybe just overwhelming. It seems like a long road ahead. It seems like such an awful thing to be doing. And when I go to the clinic everyone there acts like it's the most normal thing in the world to pump chemicals into your body. For them it is; they do it every day. But it sure is weird to have this stuff injected into me and then to just say, 'See ya later', and go home. And it's disconcerting at best that the whole thing is a guessing game based on research studies that have been done. Knowing that everyone is different, every cancer is different, it is a pretty bizarre thing to consider.
Every day I think about other people who are going through this. People I know, and friends and family of people I know. I wish I could take it away for them. I wish I could give them good health and let them live without this burden. I want someone to do that for me too. But it doesn't work that way. We just have to face whatever comes our way. Without necessarily understanding anything about why it happens. We face it head on and we keep going, because anything else is a denial of the opportunity we have to live our lives as fully as possible.
All of this might sound a bit dark. It is important for me to express that side of things. It's definitely a part of my reality right now. But it's also not the whole picture. Things are going well. I'm able to work, to spend time with my friends and family, to play outside. I'm really fortunate. And I'm well aware of that. It's always amazing to hear from people who have followed along with this whole thing. It really helps me to know that I'm in your thoughts. I guess that's just one of the things we need in life, to know we're loved. I wish sometimes that I was better at expressing it to others. I do my best anyway, with that, and with all the rest too. I know you do as well.
Love,
Chris
Despite that I'm going to try to finish these shots up over the next three weeks. After the first ones a couple of weeks ago I not only felt physically bad I was in a terrible mood. I've noticed that chemo has a toxic affect on my personality as well as my body. I get really grumpy and negative and sort of depressed. I'd like to think there is a correlation between my mood and the toxicity of the drugs in my body. And there probably is. But there's probably also a component of just feeling down due to feeling physically bad, and not being able to do all the things I want to do, or would normally do. It's a constant source of frustration. All that adds up to me being salty. I just needed a week off last week, so I talked to my doctor and he was willing to be flexible with me.
I have been avoiding alcohol while I get these higher doses of chemo, and I have to say the timing on that is terrible. The one thing I want to do is relax, to relieve some of the stress of feeling bad. Self-medication in moderation is an underrated thing in my opinion. But my liver is simply too taxed to deal with booze right now. When I was in the hospital I received some reduced doses of chemo due to lower than normal liver function (which of course is due to all of the chemo I've been getting this whole time). And I've noticed that when I have a drink I really don't feel well the next day. So I'm drinks-free, which I have to say always makes me feel like a less fun person. Not to come across as a lush - I'm nothing of the sort - but the social aspect of having a beer with my friends is something I enjoy, and dearly miss at the moment.
We all have whatever challenges we're dealing with. Some issue we can complain about or identify as being less than ideal. And we also have the opportunity to look at things the other way. To see the positive side of our situation, whatever that may be. For me it's much more difficult to be in a positive frame of mind when I'm getting chemotherapy. But when I have some time away from it, even if it's just a week off, like I had last week, I typically shift back to a more positive place. I remember that there are much worse situations I could be in. And I remember that I'm blessed to be in any type of situation at all.
It's tough to gear up for these bouts of treatment, so I do my best not to think about it most of the time. I don't mind talking about it, but moment to moment I find I'm less stressed out if it's not hovering around in my mind. Because when I get these shots and I feel like total crap for several days, it's hard to remember that things are going well, and that I'm really lucky to be here and to be making such good progress. Everything takes on a darker hue and I get that old familiar feeling of helplessness and isolation. It's a difficult thing to express to others. It's easy to relate to the idea of it, but not as much to the reality of it. My brain gets really fuzzy and I have a hard time thinking about anything in the clear way I'm used to. And that brings on anxiety and depression. Like I said, we all have our challenges, and that one stands pretty tall in front of me during those times.
It helps to write about it. It's less of a burden on others, and on our interactions. You can read what I'm going through, and understand it perhaps better than if I tried to explain it in person. I can get it off my chest. Sometimes it's pretty scary, or maybe just overwhelming. It seems like a long road ahead. It seems like such an awful thing to be doing. And when I go to the clinic everyone there acts like it's the most normal thing in the world to pump chemicals into your body. For them it is; they do it every day. But it sure is weird to have this stuff injected into me and then to just say, 'See ya later', and go home. And it's disconcerting at best that the whole thing is a guessing game based on research studies that have been done. Knowing that everyone is different, every cancer is different, it is a pretty bizarre thing to consider.
Every day I think about other people who are going through this. People I know, and friends and family of people I know. I wish I could take it away for them. I wish I could give them good health and let them live without this burden. I want someone to do that for me too. But it doesn't work that way. We just have to face whatever comes our way. Without necessarily understanding anything about why it happens. We face it head on and we keep going, because anything else is a denial of the opportunity we have to live our lives as fully as possible.
All of this might sound a bit dark. It is important for me to express that side of things. It's definitely a part of my reality right now. But it's also not the whole picture. Things are going well. I'm able to work, to spend time with my friends and family, to play outside. I'm really fortunate. And I'm well aware of that. It's always amazing to hear from people who have followed along with this whole thing. It really helps me to know that I'm in your thoughts. I guess that's just one of the things we need in life, to know we're loved. I wish sometimes that I was better at expressing it to others. I do my best anyway, with that, and with all the rest too. I know you do as well.
Love,
Chris
Sunday, May 5, 2013
Another Round Down
I was pretty worried going into the latest round of chemo that I would have a rough time. My previous experience was quite difficult and I was afraid I would go through something similar this time. Well, I made it through the week in the hospital without too much trouble. I felt really tired and a little bit nauseous, but nothing like what I had experienced before. And the following week recovering at home went by really slowly but I didn't end up getting sick and having to return to the hospital. I think the smoother ride this time around can be attributed to me being healthier overall going into it. I had blood tests on the Monday, Thursday, and the next Monday after finishing the round of chemo. And while my white blood counts got pretty low, they never hit zero, at least as far as I'm aware. That's a big change from before, when my counts would be zero for an entire week. So this time I escaped with no fever, and no return trip to the hospital.
The most significant side effect I experienced was the 'chemo brain'. General fatigue can have a similar, but less significant effect on your brain functioning. At least in terms of how it feels. If I'm really tired I'll be less mentally sharp; we all know what that's like. With chemotherapy it can feel like there's this fog that has descended on your ability to think. I have a hard time remembering things or focusing. I've gotten in the habit of doing crossword puzzles every day, and during the week following treatment I could hardly look at a puzzle. But as time goes by my head is clearing up. I still have headaches a lot, but at least I can focus again.
Towards the end of this past week my hair started falling out. I awoke each morning to progressively more hair on my pillow, until Saturday morning when I decided it was time to buzz my head again. So Denise cut all my hair off and I shaved off my beard, which had started falling out too. And now I'm more or less bald again. I have no idea how long it will take to come back, but I can take comfort in knowing that it eventually will. I'd say the worst thing about losing my hair is that my head is cold. And the second worst thing is that I don't like how it looks as much as when I have hair. So many things fall into that category when you have cancer: It sucks, but it's a hell of a lot better than not being alive.
It was kind of cool to be back at the hospital this time, feeling relatively good. It was getting to the point before that I dreaded being there because I felt so bad, and I was in less control of my comfort level there than I was at home. But this time was much easier. And it was really nice to see some of the people who had taken care of me previously. I don't know the outcome of this whole thing, but it certainly looks good at this point, and so it was fun to be a cancer patient who seems to be getting better. Certainly not all of them do.
I've thought a lot about the line between positive thinking and being realistic about my situation. On the one hand I don't want to pretend that things are somehow different or better than they are. But on the other hand I don't want to doubt my ability to get better; I want to believe in it, and I want that belief to come true. It's one of the many psychological challenges of getting cancer. We have enough fear and doubt about ourselves and our lives in general anyway without being worried about dying all the time! But I really don't feel like I'm dying, or like I'm going to die any time soon; I really feel pretty good, except for the chemo side effects. So I just have to go with that and let it provide some comfort.
I have some more chemotherapy coming up during this next month. I'm going to receive weekly injections for four weeks starting May 14th. This is the next part of the maintenance regimen I'm on. I'm not really sure exactly how it will affect me, since I've never had this dosing before. It won't be nearly as intense as what I've just gone through, supposedly, but it also lasts four weeks, so I'm not sure what the cumulative effect will be. My doctor seems to think it will be just fine, but who knows what that means. Each new thing is a complete unknown, which is another of the psychological challenges of dealing with cancer and cancer treatment. I can't wait until all of this is over, but I've got a ways to go with the maintenance stuff.
For me the best coping mechanism has been to just go out and have fun. To play outside and see my friends and do things that I enjoy so I'm not thinking about any of this stuff. It's good to reflect on it from time to time. But most of the time I don't want it on my mind at all. It's just a lot easier to deal with that way. The time will pass and the treatment will be over and I'll get to move on. And that's what I'm the most excited for now. Love to all of you
-cd
The most significant side effect I experienced was the 'chemo brain'. General fatigue can have a similar, but less significant effect on your brain functioning. At least in terms of how it feels. If I'm really tired I'll be less mentally sharp; we all know what that's like. With chemotherapy it can feel like there's this fog that has descended on your ability to think. I have a hard time remembering things or focusing. I've gotten in the habit of doing crossword puzzles every day, and during the week following treatment I could hardly look at a puzzle. But as time goes by my head is clearing up. I still have headaches a lot, but at least I can focus again.
Towards the end of this past week my hair started falling out. I awoke each morning to progressively more hair on my pillow, until Saturday morning when I decided it was time to buzz my head again. So Denise cut all my hair off and I shaved off my beard, which had started falling out too. And now I'm more or less bald again. I have no idea how long it will take to come back, but I can take comfort in knowing that it eventually will. I'd say the worst thing about losing my hair is that my head is cold. And the second worst thing is that I don't like how it looks as much as when I have hair. So many things fall into that category when you have cancer: It sucks, but it's a hell of a lot better than not being alive.
It was kind of cool to be back at the hospital this time, feeling relatively good. It was getting to the point before that I dreaded being there because I felt so bad, and I was in less control of my comfort level there than I was at home. But this time was much easier. And it was really nice to see some of the people who had taken care of me previously. I don't know the outcome of this whole thing, but it certainly looks good at this point, and so it was fun to be a cancer patient who seems to be getting better. Certainly not all of them do.
I've thought a lot about the line between positive thinking and being realistic about my situation. On the one hand I don't want to pretend that things are somehow different or better than they are. But on the other hand I don't want to doubt my ability to get better; I want to believe in it, and I want that belief to come true. It's one of the many psychological challenges of getting cancer. We have enough fear and doubt about ourselves and our lives in general anyway without being worried about dying all the time! But I really don't feel like I'm dying, or like I'm going to die any time soon; I really feel pretty good, except for the chemo side effects. So I just have to go with that and let it provide some comfort.
I have some more chemotherapy coming up during this next month. I'm going to receive weekly injections for four weeks starting May 14th. This is the next part of the maintenance regimen I'm on. I'm not really sure exactly how it will affect me, since I've never had this dosing before. It won't be nearly as intense as what I've just gone through, supposedly, but it also lasts four weeks, so I'm not sure what the cumulative effect will be. My doctor seems to think it will be just fine, but who knows what that means. Each new thing is a complete unknown, which is another of the psychological challenges of dealing with cancer and cancer treatment. I can't wait until all of this is over, but I've got a ways to go with the maintenance stuff.
For me the best coping mechanism has been to just go out and have fun. To play outside and see my friends and do things that I enjoy so I'm not thinking about any of this stuff. It's good to reflect on it from time to time. But most of the time I don't want it on my mind at all. It's just a lot easier to deal with that way. The time will pass and the treatment will be over and I'll get to move on. And that's what I'm the most excited for now. Love to all of you
-cd
Monday, April 8, 2013
Next Step
It's been a long time since the last update. The main reason for that is that I've been waiting on a decision from my doctor regarding the next step in my ongoing maintenance treatment. I met with him today and we've come to a decision.
The path to arrive at this decision took a few twists that I want to share with you. I've been getting a monthly shot and taking oral chemotherapy each week since November. This has been going relatively smoothly, but my blood counts have never really been up to a normal level. They have remained for the most part slightly below the bottom edge of the normal range. They are high enough to not be of much concern, but low enough to indicate that my bone marrow is not at full health.
This maintenance chemotherapy regimen I'm on calls for a couple of trips back to the hospital over the course of two and a half years for a week of IV chemotherapy similar to what I was getting before. But due to the blood count issue my doctor wasn't sure he wanted to give this additional chemo to me. He was concerned with the idea of over-treatment, and I shared his concerns.
A couple of weeks ago I had a PET scan. This was a first for me, and thankfully it came back normal. So according to all tests and scans and empirical evidence I am free of cancer still and doing quite well. This is great news for me and I'm thrilled to be able to share it with you. But I've had this decision hanging over my head for a while now and I really wanted to wait to write an update until it had been made.
Much of the research into the type of cancer I had has shown great success with a certain set of factors. I happen to fit all of those categories for likely success, with the slight exception that the younger one is the better off they are; but I am still pretty young in the grand scheme, so still good. And a part of the treatment that has proven successful has included this prolonged maintenance treatment.
So, to make a long story shorter, the decision has been made to go ahead with this next round of chemotherapy. I will start in a week, spend a week in the hospital. Have another week or so of low blood count recovery time, and then be able to return back to 'normal'.
I have spent most of the past few months dreading the outcome of this decision, if I'm honest. My experience with induction therapy was pretty intense. I felt completely disconnected from the world around me. Now that I look back on that I wonder how much of that was related to all of the pain meds I was taking. But the point is that it was a traumatic thing to go through and I really don't want to have to do it again. Thankfully this won't be the equivalent of doing it again. I will have to spend time in the hospital again, and I will have to go through the discomfort and the physical challenges of recovery. But it will be just one quick round, and then I can recover and resume my lovely, enjoyable life.
I feel really grateful that I can share what I feel is good news. A friend of mine recently lost a loved one to relapsed cancer. My heart goes out to them and their family. I feel a lot of things about that and even about my own situation. Conflicting things. Anger, frustration, confusion, gratitude, love. I am glad that life is so full of experiences, really deeply intense things that we go through, that we get to go through. But man does it suck sometimes. There's no getting around that. At least we can respond to those challenging things by pulling together and supporting each other. That's the beauty of the challenging things, they end up bringing us together.
I think the thing that stands out the most for me right now with this experience of dealing with cancer is that it has given me an opportunity to really step back from the nose-down, fully engrossed reality of every day life. And what I've seen from there is that most things just aren't so important as we think they are. Most of the things we are worried about and caught up in are just things, things that come and go, and fade away. We decide what matters out of it all.
I'm so glad that this has brought me closer to so many of you, even if it's just through you reading my words and in so doing sharing this experience with me. We all live in our own versions of reality and so the experiences we get to share with each other are important to me. Wish me luck with this next round of chemotherapy. I will update you on the other side.
Love,
Chris
The path to arrive at this decision took a few twists that I want to share with you. I've been getting a monthly shot and taking oral chemotherapy each week since November. This has been going relatively smoothly, but my blood counts have never really been up to a normal level. They have remained for the most part slightly below the bottom edge of the normal range. They are high enough to not be of much concern, but low enough to indicate that my bone marrow is not at full health.
This maintenance chemotherapy regimen I'm on calls for a couple of trips back to the hospital over the course of two and a half years for a week of IV chemotherapy similar to what I was getting before. But due to the blood count issue my doctor wasn't sure he wanted to give this additional chemo to me. He was concerned with the idea of over-treatment, and I shared his concerns.
A couple of weeks ago I had a PET scan. This was a first for me, and thankfully it came back normal. So according to all tests and scans and empirical evidence I am free of cancer still and doing quite well. This is great news for me and I'm thrilled to be able to share it with you. But I've had this decision hanging over my head for a while now and I really wanted to wait to write an update until it had been made.
Much of the research into the type of cancer I had has shown great success with a certain set of factors. I happen to fit all of those categories for likely success, with the slight exception that the younger one is the better off they are; but I am still pretty young in the grand scheme, so still good. And a part of the treatment that has proven successful has included this prolonged maintenance treatment.
So, to make a long story shorter, the decision has been made to go ahead with this next round of chemotherapy. I will start in a week, spend a week in the hospital. Have another week or so of low blood count recovery time, and then be able to return back to 'normal'.
I have spent most of the past few months dreading the outcome of this decision, if I'm honest. My experience with induction therapy was pretty intense. I felt completely disconnected from the world around me. Now that I look back on that I wonder how much of that was related to all of the pain meds I was taking. But the point is that it was a traumatic thing to go through and I really don't want to have to do it again. Thankfully this won't be the equivalent of doing it again. I will have to spend time in the hospital again, and I will have to go through the discomfort and the physical challenges of recovery. But it will be just one quick round, and then I can recover and resume my lovely, enjoyable life.
I feel really grateful that I can share what I feel is good news. A friend of mine recently lost a loved one to relapsed cancer. My heart goes out to them and their family. I feel a lot of things about that and even about my own situation. Conflicting things. Anger, frustration, confusion, gratitude, love. I am glad that life is so full of experiences, really deeply intense things that we go through, that we get to go through. But man does it suck sometimes. There's no getting around that. At least we can respond to those challenging things by pulling together and supporting each other. That's the beauty of the challenging things, they end up bringing us together.
I think the thing that stands out the most for me right now with this experience of dealing with cancer is that it has given me an opportunity to really step back from the nose-down, fully engrossed reality of every day life. And what I've seen from there is that most things just aren't so important as we think they are. Most of the things we are worried about and caught up in are just things, things that come and go, and fade away. We decide what matters out of it all.
I'm so glad that this has brought me closer to so many of you, even if it's just through you reading my words and in so doing sharing this experience with me. We all live in our own versions of reality and so the experiences we get to share with each other are important to me. Wish me luck with this next round of chemotherapy. I will update you on the other side.
Love,
Chris
Tuesday, February 12, 2013
What Matters?
I was diagnosed with cancer and my life
was wiped away. When I think back to that time I really had no sense
of the scope of what was happening. It was too big to even process.
That feeling of being in shock, when something bad or really intense
happens, that lasted for like three months. So but I was laying in a
hospital bed during the first weeks after I was diagnosed, and people
would come to visit, and I would talk with my family, and I had all
of these ideas running through my head about what had changed for me,
already. It was that fast. My old life was wiped away, and that
empty space was being filled in, like a rush of water from a flood.
New ideas were flying around. And I kept having certain types of
feelings, especially about all of the people that were coming to see
me and who were contacting me in different ways.
It has taken a long time for some of
those things to congeal. I'm sure that process will continue, I'm
definitely not done with this whole story yet. But some of those
ideas have started to become more concrete for me. The other night I
was thinking about life, and the different experiences people have.
How we all have all of these different experiences, and we think that
those things make us different from each other. And in many ways
they do. But at the end of the day we're all just people living
life. So in that way we're all the same. You live your life, and
you do all these things and you develop this way of seeing and
thinking about yourself and your life and that becomes your reality.
And I do the same thing, and my reality is different from yours. But
really we're exactly the same, both just living life and having our
own experiences. And in that sense it doesn't matter what they are.
It doesn't matter who we are. I say it doesn't matter, but what I
really mean is that it doesn't matter in particular what the experiences are.
It matters that they are and
that we are. It
matters that we experience something, and feel something, and create
some kind of reality for ourselves. But that's sort of inevitable,
just as a result of being a person and being alive.
So I
was thinking, well what really does matter then, like in particular?
What content of our lives really is important, if we all have
different lives and experiences and realities that are all very
meaningful and important but the contents of which aren't
particularly important? And I thought about how it would feel to be
about to die. Funnily enough, I've had that experience. Not
something to envy, mind you. So that's why I'm sharing, so hopefully
you don't have to have that experience, but you can still get
something from it anyway. And here's what I thought.
When you're old and you're going to die
all you're going to think is, “Did I give enough love?”.
You're going to think about all the
relationships you had in your life, about all of the people you knew
and you're going to think, “Did I express to that person just how
much love I feel for them? How much love I have in my heart for them?
Do they know?”. And you might think that the answer may be yes,
but you will feel an ache. And that ache is your heart yearning to
express more love to the people that you care about. To everyone.
The reason for that ache is that we live to express love. It is the
most fulfilling thing we do. And we really can't express enough of
it. We can try, and we can be successful in that endeavor, but I
think we will all probably still feel like we could have expressed
more.
That is the particular feeling that I
had more than any other when I was laying in a hospital bed with
tubes in my chest. I felt absolutely filled up with the love that I
felt for all of the people that I know. And the ache would grow
really intense when I thought about the fact that I might die, that I
had almost died, and that so much of that love would be, or could be
unexpressed. I wanted nothing more than to let all those people
know, to let all of you know, how much I love you.
I'm sure others have had vastly different experiences than I did. Not just with having cancer, but with being close to death. I mean, that was one of my earlier points, that we all have all of these disparate experiences. But I do have the sense that this feeling I'm talking about is something that nearly everyone can relate to. It's closer to universal than most experiences. An interesting contrast can be found in considering the ways that we're different versus the ways that we're the same. What do you look for when you see other people? The similarities or the differences? Or both. One more thing I'll leave you with, is that I feel so refreshed that now when I think about these types of things I feel like I can really appreciate the fact that I don't know the answers. I really really wanted to know the answers before. Not that I don't want to know now, more that I'm not so afraid of not knowing, or I'm not so hung up on knowing, or something like that. It's a kind of freedom that I'm really appreciating.
A quick update on my treatment:
All is going well with my maintenance chemo. I'm taking some pills each week, and once a month I get an IV shot. I notice the side effects from the drugs, but they are very very manageable. I don't have days on which I can't function. So I'm quite happy about that. There are some potentially more involved, intense treatments that I may have to undergo down the road. But I met with my doctor recently and he let me know that we would evaluate those things as they came up, they are not inevitabilities. Which is good to know. I get the sense that he is willing to adapt to how I'm responding, to how my body is doing, and to cater the treatment to that, rather than simply plowing ahead with a regimen because it's the thing to do. The peace of mind that I'm feeling as a result is a big deal for me. It's amazing how much anxiety having cancer and undergoing treatment for cancer can cause a person. But again, all is well, and I'm going rock climbing, and just enjoying myself, and it's wonderful.
Sunday, January 13, 2013
Not Missing Out
The other day someone asked me if having survived cancer had influenced me to feel like there were certain things I had to accomplish in my life. Things that I now felt obligated to do, or that I absolutely didn't want to miss, having gone through what I have. I've been thinking about this question a lot recently. In fact, I've been thinking a lot about what is different in my thinking, in my perspective on my life now, compared to before I was diagnosed. About how I feel on a daily basis, whether it's better or how it's different from before.
One thing that I think is important to communicate about what this feels like is that I don't necessarily think of what I went through as a near-death experience, even though it was. The overriding feeling for me is more of having gone through something really difficult, both physically and psychologically. The near-death experience didn't last a long time, and it really was months ago. The enduring challenge of undergoing chemotherapy is something that lasted a lot longer - something that I am still going through in fact - and so this is definitely the strongest sensation I have of what I've been through.
Getting cancer changed a lot of things for me. But particularly it changed how I think about myself. I used to think that there were certain ways that things are, ways things are supposed to be, and ways that I fit into that story. I thought I knew the answers. More importantly, I was concerned with the idea of there being answers to know. Most significantly I used to think that I was special in some way. Somehow different from other people. I thought I had a deeper understanding of life than many others, and that this set me apart from them. This was an isolating way to think of myself.
When I found out I had lymphoma, this idea that I was special dissolved pretty quickly. I saw through it in a way that I never would have been able to otherwise. I realized that not only was I not special and different, I was just exactly the same as everyone else. I think a lot of people in my generation were fed this idea that they are special. I'm not making a judgement about it. I understand the motivation and the tendency behind it. We want to see the world improve. We want to see progress, evolution. And so we convince ourselves of it, whether it exists or not. And actually I'm not even denying the idea of that, not at all. I tend to believe that we are evolving, as a group, on a large scale, even if it's at a slow pace. I don't know, I mean, I have only been alive 30 years, and have only seen what I've seen - a very small glimpse of the human experience. But here's my point: I'm not special, not any more than anyone else is. We are all individuals and we all have our uniqueness. But we are also all basically equal. And that is wonderful.
The reason I think this is wonderful is that seeing people in this way encourages appreciating them, no matter who they are or what they bring to the table, for just the way they are. The same concept can be applied to life in general. Whereas before I may have wanted my life to be or feel a certain way, somehow different than it was, now I am just happy that it is the way it is, and that it is at all. So to bring this back to the question I was asked, regarding things I want to do or accomplish, my answer is that I do not feel obligated to experience certain things, or to accomplish certain things. I feel incredibly grateful that I can experience anything. And I am excited to do anything. And I am so happy that I can just be here, now, thinking about and talking about my life.
Are there things I want to do? Absolutely. I feel freer to explore life than I did before. I feel like a weight of obligation has been lifted. The obligation to feel different from others, and to set myself apart from them through my thinking. I didn't realize I was thinking that way before. But I'm sure glad that I have been able to see past it. The biggest difference for me now is simply that I'm happier. And it has everything to do with this change in perspective. It feels to me like I was trying to screw a square peg into a round hole but I just couldn't see either one for what they were, and then someone came along and was like, "dude, you're doing it wrong. Here's a nice cold glass of lemonade." The point there being that the whole act of screwing the thing into the thing was pointless and didn't even really exist, and so I should just sit back and enjoy myself and not worry about it.
I hope I'm expressing all of this clearly. It's something that I can feel in a very tangible way, but that I'm not always sure how to explain to someone else. The main idea I want to convey is that this whole thing hasn't created limits for me, it's removed them. That's the simplest way I can say it. I am just happy that I can fully enjoy myself, where I didn't feel I could before. Because of that, I'm content to spend time with those I care about, doing whatever. I am no less passionate about doing the things I love. But I am much more passionate about the people I love, and that includes everyone who has supported me through this. I'm not afraid of missing out, because now I know what's truly important to me. And I'm so happy to have my life back I could cry every day.
One thing that I think is important to communicate about what this feels like is that I don't necessarily think of what I went through as a near-death experience, even though it was. The overriding feeling for me is more of having gone through something really difficult, both physically and psychologically. The near-death experience didn't last a long time, and it really was months ago. The enduring challenge of undergoing chemotherapy is something that lasted a lot longer - something that I am still going through in fact - and so this is definitely the strongest sensation I have of what I've been through.
Getting cancer changed a lot of things for me. But particularly it changed how I think about myself. I used to think that there were certain ways that things are, ways things are supposed to be, and ways that I fit into that story. I thought I knew the answers. More importantly, I was concerned with the idea of there being answers to know. Most significantly I used to think that I was special in some way. Somehow different from other people. I thought I had a deeper understanding of life than many others, and that this set me apart from them. This was an isolating way to think of myself.
When I found out I had lymphoma, this idea that I was special dissolved pretty quickly. I saw through it in a way that I never would have been able to otherwise. I realized that not only was I not special and different, I was just exactly the same as everyone else. I think a lot of people in my generation were fed this idea that they are special. I'm not making a judgement about it. I understand the motivation and the tendency behind it. We want to see the world improve. We want to see progress, evolution. And so we convince ourselves of it, whether it exists or not. And actually I'm not even denying the idea of that, not at all. I tend to believe that we are evolving, as a group, on a large scale, even if it's at a slow pace. I don't know, I mean, I have only been alive 30 years, and have only seen what I've seen - a very small glimpse of the human experience. But here's my point: I'm not special, not any more than anyone else is. We are all individuals and we all have our uniqueness. But we are also all basically equal. And that is wonderful.
The reason I think this is wonderful is that seeing people in this way encourages appreciating them, no matter who they are or what they bring to the table, for just the way they are. The same concept can be applied to life in general. Whereas before I may have wanted my life to be or feel a certain way, somehow different than it was, now I am just happy that it is the way it is, and that it is at all. So to bring this back to the question I was asked, regarding things I want to do or accomplish, my answer is that I do not feel obligated to experience certain things, or to accomplish certain things. I feel incredibly grateful that I can experience anything. And I am excited to do anything. And I am so happy that I can just be here, now, thinking about and talking about my life.
Are there things I want to do? Absolutely. I feel freer to explore life than I did before. I feel like a weight of obligation has been lifted. The obligation to feel different from others, and to set myself apart from them through my thinking. I didn't realize I was thinking that way before. But I'm sure glad that I have been able to see past it. The biggest difference for me now is simply that I'm happier. And it has everything to do with this change in perspective. It feels to me like I was trying to screw a square peg into a round hole but I just couldn't see either one for what they were, and then someone came along and was like, "dude, you're doing it wrong. Here's a nice cold glass of lemonade." The point there being that the whole act of screwing the thing into the thing was pointless and didn't even really exist, and so I should just sit back and enjoy myself and not worry about it.
I hope I'm expressing all of this clearly. It's something that I can feel in a very tangible way, but that I'm not always sure how to explain to someone else. The main idea I want to convey is that this whole thing hasn't created limits for me, it's removed them. That's the simplest way I can say it. I am just happy that I can fully enjoy myself, where I didn't feel I could before. Because of that, I'm content to spend time with those I care about, doing whatever. I am no less passionate about doing the things I love. But I am much more passionate about the people I love, and that includes everyone who has supported me through this. I'm not afraid of missing out, because now I know what's truly important to me. And I'm so happy to have my life back I could cry every day.
Wednesday, January 2, 2013
Back To Work
Today was my first day back to work, and it was a wonderful way to start the new year. This year feels like a fresh start in a lot of ways. I have this sensation of being a new person; of new opportunities to experience life in ways I hadn't before. It's always easy to look back and second guess oneself. And it's not that I'm doing that exactly. It's more that I'm happy that I'm not the person I was before, and that I am happy that I am the person I am now. Chances to go through that kind of transformation don't come along very often. So again, I'm grateful that all of this has happened and that I have been able to recreate my life from the wreckage.
Life goals that have come out of this experience:
- Be physically active (I need to repair my body!)
- Give to others (so much has been given to me, I want to give back)
- Take time to appreciate it all (a general reminder to myself to take a step back, perspective is everything)
It doesn't have to be complicated. There are so many ways to enjoy life, and to be engaged in living it. I will always come back to the feeling I had when I came out of surgery, which is: if you're worried about it, it's a waste of time/energy. I'm not sure why it was phrased that way in my mind, but that was the thought that I couldn't get away from. It was like no problems existed, they had all been wiped away by the severity of my situation. And I realized that some things are important, but nothing is worth being upset over. Life is a gift. It was a feeling of relief and of a kind of elation, which may sound odd. That's just how I felt at the time.
The experimentation with my maintenance meds is going well. I've moved to a smaller dose of one of the main medications that I take each week, which hopefully will be a level that I can withstand over the long term. I will still have monthly shots, which are a little rough, but that just lasts a day or two. I feel good about it, since it seems that I will be able to handle it without too many disabling side effects.
It's hard to believe that I've come this far when I think back to the most difficult moments during chemotherapy. For that matter, it's hard to believe that any of it happened at all. In a way it feels like no time at all has passed. Sitting at my desk today and seeing everyone again was so nice. It felt like coming home. That says a lot about the people I work with; a wonderful group of folks.
So here's to a new year, and to embracing what life throws at us. I am so happy to be productive again. My time recovering was wonderful. But let's get on with things shall we? Happy new year to you all.
Love,
Chris
Life goals that have come out of this experience:
- Be physically active (I need to repair my body!)
- Give to others (so much has been given to me, I want to give back)
- Take time to appreciate it all (a general reminder to myself to take a step back, perspective is everything)
It doesn't have to be complicated. There are so many ways to enjoy life, and to be engaged in living it. I will always come back to the feeling I had when I came out of surgery, which is: if you're worried about it, it's a waste of time/energy. I'm not sure why it was phrased that way in my mind, but that was the thought that I couldn't get away from. It was like no problems existed, they had all been wiped away by the severity of my situation. And I realized that some things are important, but nothing is worth being upset over. Life is a gift. It was a feeling of relief and of a kind of elation, which may sound odd. That's just how I felt at the time.
The experimentation with my maintenance meds is going well. I've moved to a smaller dose of one of the main medications that I take each week, which hopefully will be a level that I can withstand over the long term. I will still have monthly shots, which are a little rough, but that just lasts a day or two. I feel good about it, since it seems that I will be able to handle it without too many disabling side effects.
It's hard to believe that I've come this far when I think back to the most difficult moments during chemotherapy. For that matter, it's hard to believe that any of it happened at all. In a way it feels like no time at all has passed. Sitting at my desk today and seeing everyone again was so nice. It felt like coming home. That says a lot about the people I work with; a wonderful group of folks.
So here's to a new year, and to embracing what life throws at us. I am so happy to be productive again. My time recovering was wonderful. But let's get on with things shall we? Happy new year to you all.
Love,
Chris
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