Tonight I check back in to the hospital to start round 4 of my chemotherapy treatment. The goal with the early check-in is to get started with the actual treatment first thing Monday morning, and to hopefully wrap up the treatment and be able to check out earlier. Everything takes time at the hospital. Tests need to be run, physicians consulted, orders written, medications delivered from the pharmacy and administered by the nurse, who has several other patients and is incredibly busy.
I've spent most of the past couple of weeks dreading the continuation of this chemotherapy process. Things are going well so far, and the treatment has been very effective. But day to day it is not fun, to say the least. I have been feeling isolated and paralyzed, unable to leave the house or enjoy most of the activities I usually do. More than anything else I think I've just been afraid of being in more pain and discomfort. I know this won't last forever, and I feel confident that I will be able to overcome the cancer. But I've been overwhelmed by these emotions and fears and it's been quite a challenge for me lately.
I was sharing some of these thoughts and feelings with my family the other night. I've always benefitted from being able to talk about things that are bothering me, and I'd been keeping these feelings bottled up. The people around me have enough stress to deal with, and I didn't want to burden them with mine. Also I didn't want others to worry about me, or to doubt my ability to persevere. But I realized I needed to talk about what was bothering me; to have it reflected back to me from someone else's perspective. My dad made a comment about courage. He was referring to the idea that courage is overcoming fear. And something about that comment triggered a shift in my thinking about my current situation. I'd been pitying myself, feeling sorry for myself for being stuck and somewhat incapacitated. I'd been afraid of going back to the hospital, being in more pain and discomfort there, and dealing with the effects of further chemotherapy. I realized that early on in this process I'd responded with courage, certainly more than I had been demonstrating lately. And I remembered that one of the most important factors in overcoming cancer is having a positive attitude; responding to the fear and the challenge with courage and determination. Somehow I was able to get back to that place of strength during that conversation. And since then I've been able to settle into that place, to remain determined to face and overcome the fears that come up, rather consistently, in this experience.
It's not easy, as I expressed in my last post. But it's not supposed to be. As we all know, life is full of challenges. Cancer seems to be one of the more challenging things people go through. But there are many many people who deal with cancer, and there are many who survive and thrive having dealt with it. In my experience, through what I've heard and read from those survivors, they are often much better for it. Such is the nature of challenging experiences in life. They provoke the most growth, the most learning. And therefore, in my opinion, they are to be embraced. Recoiling in fear from the prospect of continuing chemotherapy is the opposite of embracing this challenge. I'm not trying to chastise myself, but to remind myself to turn towards what scares me. To embrace the challenge before me. It's the most effective way to learn from it. And it's definitely the most effective way to move through the challenge successfully. In the case of cancer, where one's life hangs in the balance, success is an important outcome.
Sunday, August 26, 2012
Tuesday, August 21, 2012
No Cakewalk
I just got home from the hospital where I spent the night getting three units of blood. I went in yesterday because I had been feeling really weak and tired and had some mild symptoms of infection that my doctor wanted me to get checked out. So I had some blood tests and they found that I was anemic so the doc ordered a blood transfusion. Unfortunately everything takes an extremely long time at the hospital so I had to stay overnight. All this just when I thought I had made it through this stretch without having to go back to the hospital. Something about this short stay was tough for me to take emotionally. I really wanted to spend this time at home. And although I am back home quickly, the day I spent there dragged on for a long time.
When having cancer and having to go through chemotherapy treatments becomes really challenging for me I find myself thinking things like, 'I just want this to be over', or, 'I don't want to do this any more', or, 'I just want my life back'. It's an overwhelming feeling of helplessness and despair. I don't spend the majority of my days feeling this way by any means, but there's no question that it comes up. The same way I have good and bad days physically I have them emotionally as well.
And the thing that makes it even harder is that I don't want to feel that way. It doesn't feel good. So I'm feeling bad, and then feeling bad about feeling bad. Today has been one of those days. Sitting around the hospital all day just waiting to be sent home, it is pretty easy to feel depressed. It really helps to be back home. But I still have the daunting weeks of chemotherapy ahead. And sometimes, like today, I just want it to be over already!
The way that I feel physically scares me as well. I have no idea what's going on inside my body. And I don't like having to take medication to deal with the discomfort. It's easy to worry about what's happening and what's going to happen. I suppose I just want to convey to you how challenging this really is. It's terrifying and depressing and exhausting and painful.
Now, I know there's a light at the end of the tunnel. And I can see it, I assure you. There are plenty of moments in which I feel positive and optimistic, as I've shared. I don't want to worry anybody or to give the impression that I'm doing badly. On the whole I am definitely doing really well, considering. It is good, however, to get these feelings off my chest. It helps to express them, even in writing. It helps to know that there are people who I can share these things with who will listen and support me. And honestly it helps to put these things in front of me and to cry or to just feel sad or whatever comes up. Because I have a tendency to ignore it when I feel bad. Who wants to feel bad, after all. And there's the issue of pride. I don't want people to think that I'm weak spirited. I don't want people to fuss over me. But once I get over the pride and just open up, I realize that it takes courage to do so, and that it really helps when people give me support. It's a matter of facing fear. I'm afraid of feeling sick, and of continuing to feel sick. I'm afraid that it won't end, or that it won't end when I want or expect it to end. And I'm afraid of how others view me or think of me. Thankfully facing those fears tends to diminish them, if not to eliminate them altogether.
Thank goodness for this opportunity I have to express myself. I can't tell you how therapeutic it is for me. I've always benefitted from being able to work through things 'out loud'. And hey, I'm one day closer to the end of these treatments. One day has passed, and I've learned some things, and I've been given the opportunity to experience that day, even if it wasn't all that fun.
Love to you
Chris
When having cancer and having to go through chemotherapy treatments becomes really challenging for me I find myself thinking things like, 'I just want this to be over', or, 'I don't want to do this any more', or, 'I just want my life back'. It's an overwhelming feeling of helplessness and despair. I don't spend the majority of my days feeling this way by any means, but there's no question that it comes up. The same way I have good and bad days physically I have them emotionally as well.
And the thing that makes it even harder is that I don't want to feel that way. It doesn't feel good. So I'm feeling bad, and then feeling bad about feeling bad. Today has been one of those days. Sitting around the hospital all day just waiting to be sent home, it is pretty easy to feel depressed. It really helps to be back home. But I still have the daunting weeks of chemotherapy ahead. And sometimes, like today, I just want it to be over already!
The way that I feel physically scares me as well. I have no idea what's going on inside my body. And I don't like having to take medication to deal with the discomfort. It's easy to worry about what's happening and what's going to happen. I suppose I just want to convey to you how challenging this really is. It's terrifying and depressing and exhausting and painful.
Now, I know there's a light at the end of the tunnel. And I can see it, I assure you. There are plenty of moments in which I feel positive and optimistic, as I've shared. I don't want to worry anybody or to give the impression that I'm doing badly. On the whole I am definitely doing really well, considering. It is good, however, to get these feelings off my chest. It helps to express them, even in writing. It helps to know that there are people who I can share these things with who will listen and support me. And honestly it helps to put these things in front of me and to cry or to just feel sad or whatever comes up. Because I have a tendency to ignore it when I feel bad. Who wants to feel bad, after all. And there's the issue of pride. I don't want people to think that I'm weak spirited. I don't want people to fuss over me. But once I get over the pride and just open up, I realize that it takes courage to do so, and that it really helps when people give me support. It's a matter of facing fear. I'm afraid of feeling sick, and of continuing to feel sick. I'm afraid that it won't end, or that it won't end when I want or expect it to end. And I'm afraid of how others view me or think of me. Thankfully facing those fears tends to diminish them, if not to eliminate them altogether.
Thank goodness for this opportunity I have to express myself. I can't tell you how therapeutic it is for me. I've always benefitted from being able to work through things 'out loud'. And hey, I'm one day closer to the end of these treatments. One day has passed, and I've learned some things, and I've been given the opportunity to experience that day, even if it wasn't all that fun.
Love to you
Chris
Thursday, August 16, 2012
Army of Love
One of the things I've heard a lot from other people who have had cancer is that I would eventually become really familiar with the pace and the flow of chemotherapy. I would, for example, be able to predict exactly how I would feel on certain days based on what treatments I'd had and when. Well, that is finally starting to happen for me. I realized this week that there is a pattern that I'm becoming very familiar with related to how I feel and when. And that caused me to reflect that it feels like I've been doing this for a really long time now. But in reality, it's only been two months. I'm halfway through the third of eight rounds of treatment. Things are just ramping up.
On the other hand, after the next round of treatment I'll be halfway through. And I've had some really significant positive progress. And I honestly feel really good about where things are with my treatment. It's comforting to know that certain things will affect me in certain ways and to be able to have some kind of idea how I might feel day to day. It still changes every hour, as I've mentioned before, but it's much more predictable now.
This week I had my fifth of six chemotherapy doses via lumbar puncture. This is a method of administering the drug that enables direct access to the central nervous system. Basically the medicine is injected directly into my lower back so it can get straight to my brain. I've come to find that these treatments seem to have the most extreme and immediate side effects. But I only have one more of those to go!
When I was at the clinic receiving this latest spinal tap I asked my doctor what he thought my day to day life would be like on the maintenance chemotherapy I'll be taking once this six months of intense treatment is over. It varies month to month, but it will be primarily much smaller doses taken orally over the course of about a year and a half. He told me that I would be more or less functioning normally on that treatment. I wasn't completely clear on this before, which is of course why I asked. So it's a huge relief to me to know that I will almost certainly be able to go back to work full time and to get back to a more normal life. Hearing that assessment from him of how things will be was really encouraging to me.
I've had some early positive results with the chemotherapy. I'm becoming more familiar with the ins and outs of my treatment. I am feeling better day to day than I was previously, having figured out which medications work best for me. I know that when I'm through this I will be able to have a normal life again. On top of that I have an incredibly supportive and loving family who are taking care of me. I have the most wonderful, giving friends a person could hope for. And I have this amazing extended network of support comprised of basically everyone who is connected in any way to me or my family. I feel like there is an army of love at my back.
Considering where I was two months ago, things are going remarkably well. And being able to know that, and feel that, and let that be the overall flavor of where I'm at emotionally seems to be even that much more healing and positive for me. Also, for the first time now I seem to be making it through a critical period of diminished immune capability without having to go to the hospital. This is the period of time they refer to as the nadir during which my white blood cell counts are really low and I'm vulnerable to infection. It happens during each round several days after I receive the most intense treatment. When I was at this point during round two I ended up getting a fever and having to go to the emergency room, and then stayed in the hospital for five or six days. So being able to weather the same storm at home is really nice.
The best thing about all this is that I know I will make it through this. I don't know what will happen down the road. But I absolutely know that I will make it through chemotherapy. That is an amazing feeling. As scary and unpleasant and daunting as all of this can be, it's going to be ok. I will make it!
On the other hand, after the next round of treatment I'll be halfway through. And I've had some really significant positive progress. And I honestly feel really good about where things are with my treatment. It's comforting to know that certain things will affect me in certain ways and to be able to have some kind of idea how I might feel day to day. It still changes every hour, as I've mentioned before, but it's much more predictable now.
This week I had my fifth of six chemotherapy doses via lumbar puncture. This is a method of administering the drug that enables direct access to the central nervous system. Basically the medicine is injected directly into my lower back so it can get straight to my brain. I've come to find that these treatments seem to have the most extreme and immediate side effects. But I only have one more of those to go!
When I was at the clinic receiving this latest spinal tap I asked my doctor what he thought my day to day life would be like on the maintenance chemotherapy I'll be taking once this six months of intense treatment is over. It varies month to month, but it will be primarily much smaller doses taken orally over the course of about a year and a half. He told me that I would be more or less functioning normally on that treatment. I wasn't completely clear on this before, which is of course why I asked. So it's a huge relief to me to know that I will almost certainly be able to go back to work full time and to get back to a more normal life. Hearing that assessment from him of how things will be was really encouraging to me.
I've had some early positive results with the chemotherapy. I'm becoming more familiar with the ins and outs of my treatment. I am feeling better day to day than I was previously, having figured out which medications work best for me. I know that when I'm through this I will be able to have a normal life again. On top of that I have an incredibly supportive and loving family who are taking care of me. I have the most wonderful, giving friends a person could hope for. And I have this amazing extended network of support comprised of basically everyone who is connected in any way to me or my family. I feel like there is an army of love at my back.
Considering where I was two months ago, things are going remarkably well. And being able to know that, and feel that, and let that be the overall flavor of where I'm at emotionally seems to be even that much more healing and positive for me. Also, for the first time now I seem to be making it through a critical period of diminished immune capability without having to go to the hospital. This is the period of time they refer to as the nadir during which my white blood cell counts are really low and I'm vulnerable to infection. It happens during each round several days after I receive the most intense treatment. When I was at this point during round two I ended up getting a fever and having to go to the emergency room, and then stayed in the hospital for five or six days. So being able to weather the same storm at home is really nice.
The best thing about all this is that I know I will make it through this. I don't know what will happen down the road. But I absolutely know that I will make it through chemotherapy. That is an amazing feeling. As scary and unpleasant and daunting as all of this can be, it's going to be ok. I will make it!
Friday, August 10, 2012
Round 3 Day 5 and Some Good News
I've been in the hospital receiving my third round of chemotherapy for the past five days. Since they started running the IVs on Monday afternoon I've been on a 24 hour drip the entire time I've been here. As I mentioned before this is my first experience with this version of my regimen that isn't distracted by me being intubated or recovering from other procedures, so it's my first unadulterated exposure to these drugs. It's been an intense round of treatment so far. I can tell by how I feel that the medication I'm receiving is really strong. Originally it looked like I may get out of here this afternoon. Now it may be tomorrow afternoon. But either way progress is being made and I'm happy to be moving along. Then I'll get to go home again and really rest.
Yesterday morning I had my second CT scan since being diagnosed back in June. The first scan was performed the day I checked into the hospital. It revealed the mass in my upper left chest and it showed how it had grown around my trachea, restricting my ability to breath. Shortness of breath was the number one issue I was having that lead me to go to the doctor in the first place. And it was pretty bad. When the doctors saw that first CT they were extremely alarmed. In fact, they were surprised I was even able to walk around and function as I had been. They rushed me into surgery to biopsy the mass and get a diagnosis so they could start treatment immediately. I had no time to react really. It was like being unexpectedly tossed into a raging white water current. Thankfully, it turns out I had a life jacket on.
I was wheeled down to Interventional Radiology yesterday morning for the second scan around 8am, but it was mid afternoon before I had a visit from a doctor who was able to share the results with me. She showed me the scan itself and the radiologist's report describing their findings and comparing them to the first scan. The second scan showed none of the mass that had been so apparent in the first scan. My trachea is no longer obstructed. There is no fluid around my heart or lungs as there had been when I first came in. And there is very little visual evidence of any remaining cancer whatsoever. In other words, the scan could hardly look much better!
This is amazing and encouraging news. It means that the treatment I've received so far has been very effective. It's important to keep in mind that it's very early on in this process. The original plan for my treatment included six months of high dose IV chemotherapy followed by about a year and a half of maintenance therapy. I'm not sure if this progress will change the course of my treatment or not. I don't have any idea whether things will look the same or better or worse in a month or six or a year. But I will admit that I felt optimistic before this scan was performed that it would show positive results based simply on the fact that I can breath normally again, and am feeling in better condition in many ways now than I did when I went to the hospital the first time (chemo side effects aside). So it wasn't a surprise to me to find out this good news, but it was certainly a huge boost emotionally. I've received a ton of encouragement, 'you can do this' type of messages. But there is something really concrete about this that has helped me shift into an even more positive place. I know that a full recovery is truly possible, and may even be likely now. And I'm really really really happy to be able to share this news with you.
Here's a little medical mumbo jumbo from the radiologist's report that confirms the positive findings:
1. Only minimal residual thickening of soft tissues in the anterior mediastinum and aortic-pulmonic window remaining fromt he bulky adenopathy that was present on the prior study in these areas.
2. Wide patency of the tracheobronchial system is now present.
3. No residual disease in the chest, abdomen, or pelvis.
This means that the tumor is largely gone, my airway is clear, they can't see any further cancer throughout my torso.
This is just a preliminary result. But it's an extremely good one, much better than could be expected. And every person on staff here at the hospital who I've talked to about it has confirmed their excitement about how things look. My nurse last night told me the CT results made his day. Thank you to all of you for continuing to support me, and for being so encouraging along the way. Staying positive, believing that I can overcome this and that I will, those are hugely important factors here and you have all made a significant contribution to my ability to do just that.
Love you all,
Chris
Friday, August 3, 2012
Rest Week
It's a roller coaster ride. One of the old wooden ones that makes that distinctive clackity clack sound that's scary and sort of satisfying at the same time. I'm strapped in, but don't feel completely secure, like if the coaster moved the right way I could just fly right out of my seat. And I'm definitely not in control of my destiny for the near future. I'm along for the ride, and I'm pretty sure I didn't want to get on this one in the first place. Too bad I can't blame it on peer pressure or machismo. And oh man, I'm already queasy and the ride is just getting started!
There are moments when this ride is thrilling. It's a constant process of discovery, of rebirth and redefining. There are moments that are flat out terrifying. I don't need to go too deeply into the details of that. But let's just say that in theory I'm not afraid of death. Once you die, well you don't have much to worry about. But I sure am afraid of the consequences for the people I love. I'm afraid of missing out. I am missing out, actually. But I'm really just afraid that I won't get back to where I can be a normal functioning person again.
Those fears are real. And I think it's important for me to acknowledge them. Not to try to hide from them. Part of dealing with this reality I'm living in is being realistic about it. The seriousness of what I have. The ways in which it's affecting my life now, and in the future. It's important to bring those things out and to look at them. From there I can confront and feel and process and move through them. I can go through the experience of being afraid, and I can find out that it's just a feeling. When I open my eyes I'm sitting right here. I'm a living breathing person and my life continues on just like yesterday, just like six months ago.
Right now I feel like I'm in a holding pattern. I'm waiting this thing out. I have a course of treatments that I need to complete, and while I'm in it I can't really escape back out of it. But at the same time it's moving forward quickly. I'm a quarter of the way through the six months of heavy chemotherapy. What I'm dying to know is how it will be after that. Will I regain full functionality? Will I be able to go back to work? I desperately want to be able to do that. To return to my life.
And the reason I'm so excited to get there is that I feel this huge potential. The change in perspective I've had feels inspiring to me. Like I just bought a new toy and I can't wait to try it out. In some cases that is literally true. I bought a new climbing rope this spring and I haven't used it yet, not even once. So, there's this anticipation, this building momentum that I'm feeling. And I think it's a good thing. It is helping to fuel my desire to be healthy again.
Monday I head back to St. Anthony's in Lakewood to start my third round of chemotherapy treatments. This will be yet another new experience. This third round is the same set of drugs as the first round, but the first round was complicated by the surgery I had to biopsy the cancer and the fact that I was still intubated when they started treatment. So I was recovering from surgery and had tubes in my chest and various other things. This will be the first 'normal' round with this regimen. Adventure on.
It's been a productive rest week. I've learned a lot about what works and what doesn't. What I need and what I don't. I'm starting to settle into the routine of chemotherapy. Don't worry though, I don't think it's possible to get too comfortable with this routine.
There are moments when this ride is thrilling. It's a constant process of discovery, of rebirth and redefining. There are moments that are flat out terrifying. I don't need to go too deeply into the details of that. But let's just say that in theory I'm not afraid of death. Once you die, well you don't have much to worry about. But I sure am afraid of the consequences for the people I love. I'm afraid of missing out. I am missing out, actually. But I'm really just afraid that I won't get back to where I can be a normal functioning person again.
Those fears are real. And I think it's important for me to acknowledge them. Not to try to hide from them. Part of dealing with this reality I'm living in is being realistic about it. The seriousness of what I have. The ways in which it's affecting my life now, and in the future. It's important to bring those things out and to look at them. From there I can confront and feel and process and move through them. I can go through the experience of being afraid, and I can find out that it's just a feeling. When I open my eyes I'm sitting right here. I'm a living breathing person and my life continues on just like yesterday, just like six months ago.
Right now I feel like I'm in a holding pattern. I'm waiting this thing out. I have a course of treatments that I need to complete, and while I'm in it I can't really escape back out of it. But at the same time it's moving forward quickly. I'm a quarter of the way through the six months of heavy chemotherapy. What I'm dying to know is how it will be after that. Will I regain full functionality? Will I be able to go back to work? I desperately want to be able to do that. To return to my life.
And the reason I'm so excited to get there is that I feel this huge potential. The change in perspective I've had feels inspiring to me. Like I just bought a new toy and I can't wait to try it out. In some cases that is literally true. I bought a new climbing rope this spring and I haven't used it yet, not even once. So, there's this anticipation, this building momentum that I'm feeling. And I think it's a good thing. It is helping to fuel my desire to be healthy again.
Monday I head back to St. Anthony's in Lakewood to start my third round of chemotherapy treatments. This will be yet another new experience. This third round is the same set of drugs as the first round, but the first round was complicated by the surgery I had to biopsy the cancer and the fact that I was still intubated when they started treatment. So I was recovering from surgery and had tubes in my chest and various other things. This will be the first 'normal' round with this regimen. Adventure on.
It's been a productive rest week. I've learned a lot about what works and what doesn't. What I need and what I don't. I'm starting to settle into the routine of chemotherapy. Don't worry though, I don't think it's possible to get too comfortable with this routine.
Sunday, July 29, 2012
Round 2 Day 15
I've talked a lot about the constant changing nature of how I feel physically. Here's a little example of that from the past 24 hours. Yesterday I felt pretty good most of the day. I was able to eat fairly normally, I got up and walked around a bit, I had some people visit me and I was able to hang out and talk with them without too much trouble. It was a good day. Then last night around bed time I started feeling this intense pain in my lower back. It turns out I hadn't really pooped for most of the week and at a certain point that just adds up to pure pain. Being in the hospital and on a bunch of different medications apparently creates such issues for me. So I spend most of the night trying different things and suffering through this pain, and then this morning I win that battle. Then, an hour or so later I start feeling queasy (just as my breakfast arrives of course) and promptly throw up. And I'm thinking that some of the ultra-laxative that I drank down last night must have still been in my stomach and made me sick. Because it's not the usual nausea I've been having, it's a bit different. But I'm not really sure. And I've already taken my morning dose of nausea and pain medication so I talk to my nurse and ask her for a different nausea medication and some tylenol in the hopes that combination will have some positive affect on my stomach's delicate balance. You get the idea. I'm telling you, it's something new all the time, can't get bored!
The nice thing though is that I've made some progress this week on understanding how to deal with the various discomforts of chemotherapy. I've realized that I do need some pain medication at times. There's no reason to sit around suffering when I could be in less pain. And every time I receive more treatments I learn more about how I react to them and what to expect. So it's a good learning process, and I'm feeling more and more comfortable with it, and less disoriented and blind-sided by everything.
My white blood cell counts have come way up today, so there's a fair chance I'll get to go home today. Just have to wait for the doctor to look at my numbers and make the call.
I wanted to take a moment here to thank some friends who helped me move yesterday. When I realized how the chemotherapy treatment process I'm going through would affect my life I decided it would be best to get rid of my apartment and stay with my parents for a while. Thankfully I was able to get out of my lease without too much trouble, and staying with my folks is proving to be really wonderful. My parents are taking really excellent care of me and it's just nice to have their love and support and presence nearby through this. Yesterday I asked some friends to help move my stuff out of my apartment and down to my parents' place. I am stuck in the hospital, I can't contribute to the move at all, and I was completely at the mercy of whatever others were willing to do to help me out. I am so incredibly appreciative of those of you who were able to help out yesterday. Thank you for everything. And thanks to those of you who were able to stop by afterwards and cheer me up :) I love you guys, you're amazing.
This is just a small example of the kindness and support people have been showing me. I've talked about it a lot. It means so much to me, and it is actually one of the most powerfully healing things I've experienced. Thanks to all of you for the love.
The nice thing though is that I've made some progress this week on understanding how to deal with the various discomforts of chemotherapy. I've realized that I do need some pain medication at times. There's no reason to sit around suffering when I could be in less pain. And every time I receive more treatments I learn more about how I react to them and what to expect. So it's a good learning process, and I'm feeling more and more comfortable with it, and less disoriented and blind-sided by everything.
My white blood cell counts have come way up today, so there's a fair chance I'll get to go home today. Just have to wait for the doctor to look at my numbers and make the call.
I wanted to take a moment here to thank some friends who helped me move yesterday. When I realized how the chemotherapy treatment process I'm going through would affect my life I decided it would be best to get rid of my apartment and stay with my parents for a while. Thankfully I was able to get out of my lease without too much trouble, and staying with my folks is proving to be really wonderful. My parents are taking really excellent care of me and it's just nice to have their love and support and presence nearby through this. Yesterday I asked some friends to help move my stuff out of my apartment and down to my parents' place. I am stuck in the hospital, I can't contribute to the move at all, and I was completely at the mercy of whatever others were willing to do to help me out. I am so incredibly appreciative of those of you who were able to help out yesterday. Thank you for everything. And thanks to those of you who were able to stop by afterwards and cheer me up :) I love you guys, you're amazing.
This is just a small example of the kindness and support people have been showing me. I've talked about it a lot. It means so much to me, and it is actually one of the most powerfully healing things I've experienced. Thanks to all of you for the love.
Friday, July 27, 2012
Top of the mornin' from my hospital bed
I'm nearing the end of the second week of the second three-week round of chemotherapy treatments that I'm undergoing. So I'm about five weeks into this process. This week has been by far the most challenging yet. On Monday I had an intrathecal (via lumbar tap) treatment of a particularly strong drug called cytarabine. Also around this time my blood cell counts started reaching the low point that happens when you get a bunch of chemotherapy. So on Tuesday I was feeling pretty bad, started developing a fever, and had to check back into the hospital that night. They gave me fluids and ran some tests, and found that my white blood cell count was zero, which basically means my immune system was on disability leave. So they admitted me to the hospital and have been keeping an eye on me since then. I'm taking a course of antibiotics and last night I had a blood transfusion. And yet again I'm in a nice hospital room with a lovely view and kind nurses and sufficient ice cream.
So, that's the update, the what's going on part. I haven't really told anyone (aside from my family of course) where I am or made much of an effort to communicate because I've been feeling so sick that I wasn't really capable of communication. So I apologize to any of you who wanted to see me or tried to see me this week. I've been off the map and out of commission. I'm not sure when I'll get to leave the hospital either. It will have to do with my blood cell counts coming back up to a reasonable level.
It's been an interesting experience though, feeling so incredibly bad. I've been sleeping a lot, and I've been trying to be medicated a lot. It's much easier to be out of my head on medication than to be writhing around in pain and discomfort. So I'm learning some things about my thresholds in that respect and what feels good or bad or like it's too much or not enough. Not sure I'll ever really figure it out :) I do keep coming back to the same sort of place in my head though. And that is, 'this won't last forever'. It won't. Nothing does. So if I'm having a terrible day, or a terrible moment, all I have to do is wait a little while, and it will be different. I've talked about it before. But I'm finding that this thought really is very helpful for me when I'm going through something challenging. I remember doing a long rock climb on a hot day during which my climbing partner and I didn't bring enough water. And the whole second half of the day while we were suffering from dehydration and terrible thirst, I just kept thinking, just keep going, it won't always be like this. And sure enough, we reached the top, and sure enough we got to drink a bunch of water when we got there, and in the end it actually made a pretty good story.
Well, so I'm sitting here in this hospital bed reflecting on the challenges of that hot day of rock climbing, and how miserable we were and what an incredible sense of accomplishment we had when we finally reached the top and had survived such an ordeal. And I'm thinking that experience pales somewhat in comparison to what I'm going through right now, having cancer and having basically everything in my life change. And I'm inspired by it. I have this feeling like what's coming out of this is bigger than anything I could have imagined. The challenge of it is certainly bigger than anything I could have imagined. And I know that it's the most important thing I've experienced in my life, and that it will inform the rest of my life in a hugely significant way. And I actually just want to write about it. I want to express it in that way because to write about it helps me to reflect on it for myself and gain perspective on it and learn from it in ways I may not otherwise. So thanks for reading my blog and reflecting it back to me. It's a healing thing. And it feeds this sense of community that has developed around this whole experience for me; something I've always desired but never knew how to cultivate.
Now if you'll excuse me, I'm going to see if I can discover the right combination of medications that will allow me to eat some breakfast. Enjoy this beautiful day.
So, that's the update, the what's going on part. I haven't really told anyone (aside from my family of course) where I am or made much of an effort to communicate because I've been feeling so sick that I wasn't really capable of communication. So I apologize to any of you who wanted to see me or tried to see me this week. I've been off the map and out of commission. I'm not sure when I'll get to leave the hospital either. It will have to do with my blood cell counts coming back up to a reasonable level.
It's been an interesting experience though, feeling so incredibly bad. I've been sleeping a lot, and I've been trying to be medicated a lot. It's much easier to be out of my head on medication than to be writhing around in pain and discomfort. So I'm learning some things about my thresholds in that respect and what feels good or bad or like it's too much or not enough. Not sure I'll ever really figure it out :) I do keep coming back to the same sort of place in my head though. And that is, 'this won't last forever'. It won't. Nothing does. So if I'm having a terrible day, or a terrible moment, all I have to do is wait a little while, and it will be different. I've talked about it before. But I'm finding that this thought really is very helpful for me when I'm going through something challenging. I remember doing a long rock climb on a hot day during which my climbing partner and I didn't bring enough water. And the whole second half of the day while we were suffering from dehydration and terrible thirst, I just kept thinking, just keep going, it won't always be like this. And sure enough, we reached the top, and sure enough we got to drink a bunch of water when we got there, and in the end it actually made a pretty good story.
Well, so I'm sitting here in this hospital bed reflecting on the challenges of that hot day of rock climbing, and how miserable we were and what an incredible sense of accomplishment we had when we finally reached the top and had survived such an ordeal. And I'm thinking that experience pales somewhat in comparison to what I'm going through right now, having cancer and having basically everything in my life change. And I'm inspired by it. I have this feeling like what's coming out of this is bigger than anything I could have imagined. The challenge of it is certainly bigger than anything I could have imagined. And I know that it's the most important thing I've experienced in my life, and that it will inform the rest of my life in a hugely significant way. And I actually just want to write about it. I want to express it in that way because to write about it helps me to reflect on it for myself and gain perspective on it and learn from it in ways I may not otherwise. So thanks for reading my blog and reflecting it back to me. It's a healing thing. And it feeds this sense of community that has developed around this whole experience for me; something I've always desired but never knew how to cultivate.
Now if you'll excuse me, I'm going to see if I can discover the right combination of medications that will allow me to eat some breakfast. Enjoy this beautiful day.
Monday, July 23, 2012
Round 2 Day 8
Are you comfortable? There are so many ways to look at this question. Do you feel physically comfortable, is it too hot or cold out, are you wearing socks that itch you. Of the astoundingly vast number of ways that I could possibly be uncomfortable most of them see to be within the realm of what I can control. If I'm cold I throw on a sweater. If an argument gets heated I can take some deep breaths, I can take responsibility for my own part of the matter, I can walk away. If I don't like what's on TV I can change it. I have so many options. To consider them all is to be overwhelmed, and, I would suggest, is a total waste of time. What's interesting are those moments in which we are uncomfortable and we have no idea how not to be. We don't know what's going on, or what's coming, or why, or who's involved, or the timing of things, or physically how we will be feeling.
These moments are the ones that terrify us. They are the ones that loom much larger in our minds than they do in the reality of when they're presented. The simple way out of this mind trip is, "if you're worried about it, it's probably not a problem." It sounds simple, and it is simple. But we all know better than that right.
I had this sliver of a realization the other day that I've been struggling to hold onto. It was pretty abstract and it came on in a fairly medicated daze I was existing in while laying on the couch. There's this sense that we all of deep down of whether things are right or wrong. You can call it intuition, or God's voice, or the mother earth spirits guidance. There is something that we have available to us, and every now and again it shines a little light beam of understanding through onto a problem that we're facing. (This of course usually happens after we've already gone through all of the misery and pain and frustration of the problem and are finally "ready" to get it - for whatever reason). But it's there. I know it's there because I've had the experience of seeing things clearly in retrospect and having them fit in and knowing (not just thinking but really KNOWING) what was/is right. It's a cool experience to have, and I"m sure many, if not most of you, can relate to it.
So yesterday I'm half baked on my couch just making sure I don't forget to keep breathing and this physical sensation moves through me accompanied with a thought. It has to do with the anxiety of something NOT BEING RIGHT. Like, I'm doing something wrong, or something is happening that shouldn't, or there is some aspect of the way things are right in this moment that isn't fair or balanced or good or, well RIGHT. And that thought, that feeling doesn't feel good. It creates this discord within my body and I can feel this physical sensation of strain against something. And then the thought shifts slightly and it's like my body aligns with it. In that moment I know that the place I'm in, the sensation and the thought I'm having, and the reality around it are only what they are. And there's no other way they can be. And that ball in the pit of my stomach, that tense ball, that relaxes for a minute, and I feel calm, and some of the discomfort I'm in may even fade back away a little, maybe not. But to physically feel myself align with reality was really freakin neat!
The point of all this is that we are looking for answers to questions all the time looking looking looking. And all the answers are already right there. I know it's been said many times before, in many ways, by many people. I know it's a cliche and that if it were that easy we'd all just wake up and walk around with smiles on our faces and eat tasteless nutri-paste. And that would be so uninteresting. But sometimes when things get desperate, or just really hard, you need a bone thrown your way. You need a little pin prick of light to let you know that this particularly dark tunnel does in fact have an ending.
So, do I feel comfortable today? Right now I am mildly comfortable. Later on I will likely be writhing around on my side ready to throw up. Maybe after that I'll sit down and have a nice meal with my family. I don't know. I can't know. It is literally beyond my control. So the next time I find myself getting worked up about how I feel, I just close my eyes and say, OK, I'll keep breathing, and see where we go from here.
These moments are the ones that terrify us. They are the ones that loom much larger in our minds than they do in the reality of when they're presented. The simple way out of this mind trip is, "if you're worried about it, it's probably not a problem." It sounds simple, and it is simple. But we all know better than that right.
I had this sliver of a realization the other day that I've been struggling to hold onto. It was pretty abstract and it came on in a fairly medicated daze I was existing in while laying on the couch. There's this sense that we all of deep down of whether things are right or wrong. You can call it intuition, or God's voice, or the mother earth spirits guidance. There is something that we have available to us, and every now and again it shines a little light beam of understanding through onto a problem that we're facing. (This of course usually happens after we've already gone through all of the misery and pain and frustration of the problem and are finally "ready" to get it - for whatever reason). But it's there. I know it's there because I've had the experience of seeing things clearly in retrospect and having them fit in and knowing (not just thinking but really KNOWING) what was/is right. It's a cool experience to have, and I"m sure many, if not most of you, can relate to it.
So yesterday I'm half baked on my couch just making sure I don't forget to keep breathing and this physical sensation moves through me accompanied with a thought. It has to do with the anxiety of something NOT BEING RIGHT. Like, I'm doing something wrong, or something is happening that shouldn't, or there is some aspect of the way things are right in this moment that isn't fair or balanced or good or, well RIGHT. And that thought, that feeling doesn't feel good. It creates this discord within my body and I can feel this physical sensation of strain against something. And then the thought shifts slightly and it's like my body aligns with it. In that moment I know that the place I'm in, the sensation and the thought I'm having, and the reality around it are only what they are. And there's no other way they can be. And that ball in the pit of my stomach, that tense ball, that relaxes for a minute, and I feel calm, and some of the discomfort I'm in may even fade back away a little, maybe not. But to physically feel myself align with reality was really freakin neat!
The point of all this is that we are looking for answers to questions all the time looking looking looking. And all the answers are already right there. I know it's been said many times before, in many ways, by many people. I know it's a cliche and that if it were that easy we'd all just wake up and walk around with smiles on our faces and eat tasteless nutri-paste. And that would be so uninteresting. But sometimes when things get desperate, or just really hard, you need a bone thrown your way. You need a little pin prick of light to let you know that this particularly dark tunnel does in fact have an ending.
So, do I feel comfortable today? Right now I am mildly comfortable. Later on I will likely be writhing around on my side ready to throw up. Maybe after that I'll sit down and have a nice meal with my family. I don't know. I can't know. It is literally beyond my control. So the next time I find myself getting worked up about how I feel, I just close my eyes and say, OK, I'll keep breathing, and see where we go from here.
Wednesday, July 18, 2012
Round 2 Day 3
So far my second stay in the hospital has been vastly different from the first. To start, I'm at St. Anthony's main hospital in Lakewood, instead of at the North campus up in Westminster. The Lakewood facility is brand new, it's been open about a year, and it is a really beautiful and well designed hospital. The rooms are larger and cleaner and more comfortable. The cafeteria is nicer (if a bit more expensive). And they have all these wonderful services like the music therapist I mentioned yesterday on Facebook. This morning a massage therapist came to my room and gave me a wonderful foot massage. I feel like I'm being treated with a level of care that one might find in a four star hotel. There is coffee service and refrigerators for me to keep food in, and I have a beautiful view of the city from my sixth floor room. It's quite an experience. Actually it's a bit surreal, especially given the intensity of what my body is going through, and the intensity of the chemotherapy treatments I'm receiving. I'm basically having mustard gas pumped into by body day and night, along with plenty of other medications to protect me from those toxic chemicals and their side effects. It really is a fascinating approach to treating an illness. Kill everything and then hope the right things can recover and the wrong ones can't. I have total faith in my doctors though, they are amazing advocates for me. And really what choice do I have? My life is in their hands.
On top of that I've been feeling better at the hospital over all than I had been at home. Perhaps that has to do with being on so much medication here. Maybe it's the view from my room or the beautiful rendition of John Denver's 'Today' that I heard yesterday. Or maybe this whole experience just changes every hour or so and I really don't know what's coming next. But having someone bring me coffee and having my wonderful parents taking care of me constantly, and having friends visit and nurses sharing their stories and people expressing all this love and support and help and healing in my direction sure feels special. It helps that I'm not in pain, that I'm not on narcotics, that I'm eating plenty of ice cream and that I can rest or read or watch a movie or watch the food network to perk up my appetite. In a way it's like I'm on vacation. And in another way it's like I'm in a constant state of delirious misery. But that's what I like about life. It's an adventure. You don't know what's coming next, and it's not really up to you. And when it's really challenging, like this is now, well you know a couple of things. You know it won't last forever, and you know that at the end of this experience you will have learned something invaluable about yourself and how you deal with adversity, and it will make you a stronger and better person. So that's where I'm living in my head. I'm diving into each moment that hits me, and some of them I have to ball up and tuck my way through, and others and I can stretch out and soak up like warm sunshine. And each of them has its own beauty and its own flavor that I can cherish for what they are. It's a very immediate, very intimate experience of this series of moments.
I wanted to make a comment for folks who visit or want to visit. The roller coaster nature of my physical state make it a bit of a crap shoot as to how receptive I'll be when you happen to drop by. Ultimately I want to see you. Any and all of you. It brightens my spirits immensely to have people come by and spend a few minutes or an hour or whatever happens to work out. So if you do happen to drop by and see me, as you are more than welcome to do, please just keep in mind that I may be feeling great, or possibly terrible when you show up, and know that I may have to close my eyes and nap or I might be up for playing a game. I just don't know because how I'm feeling changes about every hour or so. So, please come by if you feel to do so, but just be prepared for anything :)
Enjoy this beautiful summer day wherever you are, whatever you're doing.
Love,
Chris
On top of that I've been feeling better at the hospital over all than I had been at home. Perhaps that has to do with being on so much medication here. Maybe it's the view from my room or the beautiful rendition of John Denver's 'Today' that I heard yesterday. Or maybe this whole experience just changes every hour or so and I really don't know what's coming next. But having someone bring me coffee and having my wonderful parents taking care of me constantly, and having friends visit and nurses sharing their stories and people expressing all this love and support and help and healing in my direction sure feels special. It helps that I'm not in pain, that I'm not on narcotics, that I'm eating plenty of ice cream and that I can rest or read or watch a movie or watch the food network to perk up my appetite. In a way it's like I'm on vacation. And in another way it's like I'm in a constant state of delirious misery. But that's what I like about life. It's an adventure. You don't know what's coming next, and it's not really up to you. And when it's really challenging, like this is now, well you know a couple of things. You know it won't last forever, and you know that at the end of this experience you will have learned something invaluable about yourself and how you deal with adversity, and it will make you a stronger and better person. So that's where I'm living in my head. I'm diving into each moment that hits me, and some of them I have to ball up and tuck my way through, and others and I can stretch out and soak up like warm sunshine. And each of them has its own beauty and its own flavor that I can cherish for what they are. It's a very immediate, very intimate experience of this series of moments.
I wanted to make a comment for folks who visit or want to visit. The roller coaster nature of my physical state make it a bit of a crap shoot as to how receptive I'll be when you happen to drop by. Ultimately I want to see you. Any and all of you. It brightens my spirits immensely to have people come by and spend a few minutes or an hour or whatever happens to work out. So if you do happen to drop by and see me, as you are more than welcome to do, please just keep in mind that I may be feeling great, or possibly terrible when you show up, and know that I may have to close my eyes and nap or I might be up for playing a game. I just don't know because how I'm feeling changes about every hour or so. So, please come by if you feel to do so, but just be prepared for anything :)
Enjoy this beautiful summer day wherever you are, whatever you're doing.
Love,
Chris
Monday, July 16, 2012
Round 2 Day 1
I just checked into the hospital to begin my second round of chemotherapy treatment. I feel really hopeful today, excited to be moving forward with this process. The past week at home has actually been pretty challenging. I've been playing with the medications I'm on, experimenting with what works and what doesn't. At this point I've determined that the fewer meds I take the better I feel. Which is pretty interesting to me, but also a relief. When I was in the hospital the first time I had a nurse who wondered if all the anti-nausea meds I was taking were actually making it worse for me, and I think she may have been right after all. I have definitely experienced adverse effects from pain medication, and sedation in general has blocked me up like a cork in the ass. And the other night after I'd been off anti-nausea meds for 24 hours and tried taking them again I started throwing up like I hadn't in days. So I'm done. It'll be interesting to see how my doctors react to me not wanting any medication. But hey, it's my body right, only I can tell what's working and what isn't. Different nurse taught me that one.
So the adventure continues, and an adventure it surely is. Each day contains so many unknowns, and so many challenges. But if there's one thing I've embraced in my life it's adventure. After all I'm a rock climber in my heart. One who explores and loves wild unknown places, and danger, and risk. So, high dose Methotrexate, and whatever else they're throwing at me this week. Bring it on. The cancer inside me needs a kick in the ass. And this will do the trick. And I'm ready to take on whatever comes along with it. I know it's going to be hard, and I know I'm going to feel worse than I do now. But after what I've already been through it's just another mile, just another stretch of flat water under the bow. You pull through it and the place you end up is always worth the effort.
Thanks to all of you for following my journey and for reading my writing. It helps to know I'm not alone. Keep you posted!
So the adventure continues, and an adventure it surely is. Each day contains so many unknowns, and so many challenges. But if there's one thing I've embraced in my life it's adventure. After all I'm a rock climber in my heart. One who explores and loves wild unknown places, and danger, and risk. So, high dose Methotrexate, and whatever else they're throwing at me this week. Bring it on. The cancer inside me needs a kick in the ass. And this will do the trick. And I'm ready to take on whatever comes along with it. I know it's going to be hard, and I know I'm going to feel worse than I do now. But after what I've already been through it's just another mile, just another stretch of flat water under the bow. You pull through it and the place you end up is always worth the effort.
Thanks to all of you for following my journey and for reading my writing. It helps to know I'm not alone. Keep you posted!
Subscribe to:
Comments (Atom)