Wednesday, December 9, 2009
Day + 411, Part 2
Sorry, forgot to update how I've been feeling. For the most part, feeling well and doing better. as I said in my last message, my energy levels seem to lower then they were before I got sick, but I think if I put some real effort into getting back into exercise, those energy levels should go back up. My good days are far outweighing the bad which is how I guage how I'm doing, so, things are good. I still have a long way to go and I'm hoping my new exercise regimine will help that along, but even without that, I'm feeling better. Now move on and read the next marathon message...
Day + 411
Full circle. That would the best way I can describe how I am feeling right now. I guess I should start by saying I am sorry for being gone for so long. I guess the only thing I can say about that is there hasn’t been much to share. I know, a poor excuse for laziness, but there is some truth in that. The extent of my news has been limited to doctor visits and medication changes, but again, I’m sorry for not checking in for so long. I will try to stay on top of this as news comes, but as I said, news has been pretty boring as of late.
So back to my full circle comment. As I sit here and type, I am looking out from my hotel room in the Philippines. This is sight that 18 months ago, I was convinced I would never see again. I have vivid memories of lying in my hospital bed and thinking to myself without a doubt that I would never travel again. In fact, I had myself convinced that I would never travel on a plane again, both domestically and internationally. Some of this was brought on by the fact that my Leukemia was very aggressive and took high dose chemo to get me in remission and also from just listening to my doctors and nurses. Its funny too, because at the time, I remember being ok with it. My priority at the time was obviously all about getting well and beating the cancer, so everything else kind of took a back seat, but I remember seeing places on tv and in magazines and thinking to myself, my god, I’m never going to be able to travel again. The doctors were doing their job by not getting my hopes up which I think is good.
It’s funny because my life has now become a series of milestones. It started off by getting to leave my room to walk outside in the courtyard at the hospital. It then went to getting discharged and eating non hospital food at our place in San Diego. Then it was being able to leave the immediate vicinity of the hospital and take a road trip to Santa Barbara. Going back to work full time was a huge milestone for me and much needed for my sanity. Then going surfing for the first time (which was very unsuccessful) was a big step mentally. I say unsuccessful because I went from surfing big perfect waves all over the world to not even being able to stand up on small San Clemente slop…oh well, gotta learn all over again I guess. Anyway, back to the milestones. The next big one was being able to get on a plane and travel domestically. I went back to Buffalo for work and have done so many times since. And to round out the milestone process, I am now in a foreign non-Western country where you could argue sanitary conditions are not necessarily hospital like. I absolutely love the Philippines and it’s only fitting that this is the place I put my first international foot on the ground post cancer.
It hasn’t been without it’s emotions, even though I only landed 16 hours ago. As I got off the plane I could smell the distinctive Philippines smell which instantly brought a huge smile to my face that I couldn’t get rid of for many minutes. Walking through the lobby of the hotel I always stay at brought back a rush of memories which all came to a head this morning at the gym. I really haven’t exercised at all since I started my recovery. I was telling a friend of mine today at lunch that I’m not sure if that’s because I really am fatigued and tired from the cancer, or if it’s just because I’ve grown lazy and use my sickness as an excuse. Regardless, I exercised this morning for the first time since I can remember and it felt great. I just about killed myself, but as I said it felt great. It wasn’t until I took a seat to rest outside by the pool that things started to hit me. I don’t want to get too deep into it, but what was a relaxing post workout rest, turned into a crazy mix of emotions centered on where I am today compared to where I was the last time I was here.
It’s easy to sit here and say the cancer came, I’m in remission and things are now getting back on track through recovery. The reality is, it’s impossible to not think of what has been lost during that process. These are the things you have to get through on your own. Sometimes they barely hit you, and sometimes they hit you like a sledge hammer. For some reason, today was a sledge hammer. It’s a tough pill to swallow when you’re sitting the utterly exhausted from the tiny workout you just finished, and you start to remember that the last time you were here. A time when I was traveling all of the country, surfing some of the best waves I’ve ever surfed, ocean swimming when I was bored, running or working out every day I wasn’t in the water, and no doubt in the best physical shape of my life. Sitting there in that chair, the reality of what has been lost hit hard. I guess my point is, there is whole other side of recovery from cancer that is beyond medicine and blood counts, and my experience so far is that it is more difficult. It’s a daily battle to not think of the things lost and focus on the fact that I’m alive, but there is a thing called human nature which you can’t escape. Just like the chemo treatments and everything else you go through in the hospital, it’s all how you deal with it. I'm pretty sure I'm doing alright with it, but I do have my moments.
So here I sit, come around full circle cancer free and back in the Philippines. I’m not sure how many more milestones are out there, but I look forward to them. As of now I think I’ve hit them all, but I’m sure there will be some eye openers along the way where I’ll be surprised I’m doing something.
I do have some news to share. I had another bone marrow biopsy done about 6 weeks ago and the results came back squeaky clean. I have now been in remission for over one year with 4 more to go before I can get comfortable. So all is good on the recovery front and the fact alone that my doctor gave me the green light to travel here, means everything. All I am going to do is keep doing what my doctors say, try to keep my head in the right place and be as good as possible to the people around me. Pretty simple huh? We’ll see. I hope you all have a Merry Christmas and happy holidays. Evey and I just bought our first tree together and I can’t wait to get home to it. Take care and be well everyone.
So back to my full circle comment. As I sit here and type, I am looking out from my hotel room in the Philippines. This is sight that 18 months ago, I was convinced I would never see again. I have vivid memories of lying in my hospital bed and thinking to myself without a doubt that I would never travel again. In fact, I had myself convinced that I would never travel on a plane again, both domestically and internationally. Some of this was brought on by the fact that my Leukemia was very aggressive and took high dose chemo to get me in remission and also from just listening to my doctors and nurses. Its funny too, because at the time, I remember being ok with it. My priority at the time was obviously all about getting well and beating the cancer, so everything else kind of took a back seat, but I remember seeing places on tv and in magazines and thinking to myself, my god, I’m never going to be able to travel again. The doctors were doing their job by not getting my hopes up which I think is good.
It’s funny because my life has now become a series of milestones. It started off by getting to leave my room to walk outside in the courtyard at the hospital. It then went to getting discharged and eating non hospital food at our place in San Diego. Then it was being able to leave the immediate vicinity of the hospital and take a road trip to Santa Barbara. Going back to work full time was a huge milestone for me and much needed for my sanity. Then going surfing for the first time (which was very unsuccessful) was a big step mentally. I say unsuccessful because I went from surfing big perfect waves all over the world to not even being able to stand up on small San Clemente slop…oh well, gotta learn all over again I guess. Anyway, back to the milestones. The next big one was being able to get on a plane and travel domestically. I went back to Buffalo for work and have done so many times since. And to round out the milestone process, I am now in a foreign non-Western country where you could argue sanitary conditions are not necessarily hospital like. I absolutely love the Philippines and it’s only fitting that this is the place I put my first international foot on the ground post cancer.
It hasn’t been without it’s emotions, even though I only landed 16 hours ago. As I got off the plane I could smell the distinctive Philippines smell which instantly brought a huge smile to my face that I couldn’t get rid of for many minutes. Walking through the lobby of the hotel I always stay at brought back a rush of memories which all came to a head this morning at the gym. I really haven’t exercised at all since I started my recovery. I was telling a friend of mine today at lunch that I’m not sure if that’s because I really am fatigued and tired from the cancer, or if it’s just because I’ve grown lazy and use my sickness as an excuse. Regardless, I exercised this morning for the first time since I can remember and it felt great. I just about killed myself, but as I said it felt great. It wasn’t until I took a seat to rest outside by the pool that things started to hit me. I don’t want to get too deep into it, but what was a relaxing post workout rest, turned into a crazy mix of emotions centered on where I am today compared to where I was the last time I was here.
It’s easy to sit here and say the cancer came, I’m in remission and things are now getting back on track through recovery. The reality is, it’s impossible to not think of what has been lost during that process. These are the things you have to get through on your own. Sometimes they barely hit you, and sometimes they hit you like a sledge hammer. For some reason, today was a sledge hammer. It’s a tough pill to swallow when you’re sitting the utterly exhausted from the tiny workout you just finished, and you start to remember that the last time you were here. A time when I was traveling all of the country, surfing some of the best waves I’ve ever surfed, ocean swimming when I was bored, running or working out every day I wasn’t in the water, and no doubt in the best physical shape of my life. Sitting there in that chair, the reality of what has been lost hit hard. I guess my point is, there is whole other side of recovery from cancer that is beyond medicine and blood counts, and my experience so far is that it is more difficult. It’s a daily battle to not think of the things lost and focus on the fact that I’m alive, but there is a thing called human nature which you can’t escape. Just like the chemo treatments and everything else you go through in the hospital, it’s all how you deal with it. I'm pretty sure I'm doing alright with it, but I do have my moments.
So here I sit, come around full circle cancer free and back in the Philippines. I’m not sure how many more milestones are out there, but I look forward to them. As of now I think I’ve hit them all, but I’m sure there will be some eye openers along the way where I’ll be surprised I’m doing something.
I do have some news to share. I had another bone marrow biopsy done about 6 weeks ago and the results came back squeaky clean. I have now been in remission for over one year with 4 more to go before I can get comfortable. So all is good on the recovery front and the fact alone that my doctor gave me the green light to travel here, means everything. All I am going to do is keep doing what my doctors say, try to keep my head in the right place and be as good as possible to the people around me. Pretty simple huh? We’ll see. I hope you all have a Merry Christmas and happy holidays. Evey and I just bought our first tree together and I can’t wait to get home to it. Take care and be well everyone.
Sunday, August 16, 2009
Day + 297
Hi everyone, long time no talk. Look at that, close to 300 days since my transplant. It's been a while since my last message and I apologize for that. As you saw then, there has been a lot going on, and it really hasn’t slowed down. I didn’t realize that once we bought this house, I’d be at Home Depot just about every day, sometimes twice a day. Not to say we have a lot of repairs to do, but you find things all over the place that you want to change to your taste. It’s been busy but it’s also been fun. Quite honestly, getting the house together and working full time has really kept me busier than I’ve been in over a year. It’s nice to be busy, but there are times where I just want to lay on the couch and read or watch tv.
So…my health. I’d love to tell you that with time things have progressively grown better and better, but that just isn’t the case. I seem to be in a long holding pattern with my health, where I just can’t get over that "feel good" hump that’s in front of me. Difficult to explain but I think you get it. I still have good days here and there, but my expectation was that by now, those good days would be increasing with the tough ones falling by the wayside. That hasn’t been the situation. In fact, over the past few weeks my tough days have become more prevalent than they have been in the past. Headaches are not going away and that overall awful feeling that I’ve described in the past has lingered on for multiple days rather than just a day here or a day there. To add to it, my muscles, joints and tendons are for whatever reason extremely tight and painful when I wake up in the morning, so just getting up and rolling out of bed is not an option. I could honestly type for hours about what this is doing to me both physically and mentally, but I’ll simply say it’s exhausting.
Some good news is that my counts continue to be right where my doctors want them to be so my medications are decreasing. In fact things are going so well on that front, that I was just recently cleared to travel domestically. This was huge news for me because it tells me that no matter how bad I’m feeling or how tough the times are I’m going through right now, my doctors see my overall health progressively getting better which means I’m getting closer and closer to being able to live a normal life. A life I seriously can’t remember. I honestly couldn’t imagine being able to jump in my car with my surfboard and head down to the beach…sitting on the sand with my shirt off enjoying the sun. paddling out and enjoying the ocean. Those times are so foreign to me right now that it is almost like a dream, but taking the step like being able to get on a plane gets me that much closer. I actually did jump in the ocean during the US Open in HB a couple of weeks ago and it was amazing. I can’t wait to get out on a board if you can’t tell. The next steps for me would be international travel, then being able to swim in a pool and then the ultimate…the ocean. I see those days getting closer and that’s what keeps me smiling. That is going to be one hell of a day.
I'm not going to lie or try to paint a rosey picture. Things are tough right now and I've been broken down at times, but there are also some very bright spots. Work is going well, I have the girl of my dreams on my arm, I live in what I consider paradise and I have the best dog anyone could ask for. Even on a bad day I have to smile at that. Thanks again for all of the support. I know I say this a million times and even that’s not enough. I can’t put into words what you all mean to me and what you have done to contribute to where I am now. See you all at Angel Stadium for the Light the Light walk next weekend. Otherwise, take care and be well.
So…my health. I’d love to tell you that with time things have progressively grown better and better, but that just isn’t the case. I seem to be in a long holding pattern with my health, where I just can’t get over that "feel good" hump that’s in front of me. Difficult to explain but I think you get it. I still have good days here and there, but my expectation was that by now, those good days would be increasing with the tough ones falling by the wayside. That hasn’t been the situation. In fact, over the past few weeks my tough days have become more prevalent than they have been in the past. Headaches are not going away and that overall awful feeling that I’ve described in the past has lingered on for multiple days rather than just a day here or a day there. To add to it, my muscles, joints and tendons are for whatever reason extremely tight and painful when I wake up in the morning, so just getting up and rolling out of bed is not an option. I could honestly type for hours about what this is doing to me both physically and mentally, but I’ll simply say it’s exhausting.
Some good news is that my counts continue to be right where my doctors want them to be so my medications are decreasing. In fact things are going so well on that front, that I was just recently cleared to travel domestically. This was huge news for me because it tells me that no matter how bad I’m feeling or how tough the times are I’m going through right now, my doctors see my overall health progressively getting better which means I’m getting closer and closer to being able to live a normal life. A life I seriously can’t remember. I honestly couldn’t imagine being able to jump in my car with my surfboard and head down to the beach…sitting on the sand with my shirt off enjoying the sun. paddling out and enjoying the ocean. Those times are so foreign to me right now that it is almost like a dream, but taking the step like being able to get on a plane gets me that much closer. I actually did jump in the ocean during the US Open in HB a couple of weeks ago and it was amazing. I can’t wait to get out on a board if you can’t tell. The next steps for me would be international travel, then being able to swim in a pool and then the ultimate…the ocean. I see those days getting closer and that’s what keeps me smiling. That is going to be one hell of a day.
I'm not going to lie or try to paint a rosey picture. Things are tough right now and I've been broken down at times, but there are also some very bright spots. Work is going well, I have the girl of my dreams on my arm, I live in what I consider paradise and I have the best dog anyone could ask for. Even on a bad day I have to smile at that. Thanks again for all of the support. I know I say this a million times and even that’s not enough. I can’t put into words what you all mean to me and what you have done to contribute to where I am now. See you all at Angel Stadium for the Light the Light walk next weekend. Otherwise, take care and be well.
Wednesday, July 1, 2009
Day + 251
So it's been quite some time since my last posting and I apologize for that. I must say it has been a busy few weeks, that's for sure. Much busier than it has been for me since this time last year. I've been living in the middle of 4 part hurricane. Moving home from San Diego to Costa Mesa, planning a wedding, going back to work full time and the cherry on the cake...moving into our new house from Costa Mesa to Costa Mesa. For the latter we bit the bullet and actually hired movers for the job. We just couldn't take it anymore. So as you can tell, busy is an understatement. All good stuff though. I just can't wait to be nice and settled in our new place. We absolutely love it, as does Floyd. So enough about that.
Since my last posting, I've been feeling well but have found myself on a roller coaster of fatigue. I haven't been exercising much because of everything going on, but I still find myself getting really tired at times. There are a few times a week where I will find myself literally falling asleep where I sit. This is usually around 6 or 7 at night, so I have to do my best to stay awake. If succumb to the dreaded evening nap, there is no way I'll get to sleep later that night. There are even times where I'll be out to dinner and falling asleep at the table. It just hits me out of the blue and down I go. I'll be honest with you though, I'll take that any day over the bouts of nausea or just the overall awful feeling days I used to have. Those days are the worst and luckily they seem to be down to just a couple of days a week as opposed to the typical 5 days a week. Those are the days that just tear you down physically, mentally and emotionally and also affect the people close to me. Cancer is a very contagious disease. Contagious from the standpoint that other people aren't getting what I have, but they are still feeling the pains of what I'm going through. All I can do is apologize to those loved ones, family and friends. After a year you'd be surprised at how worn down this makes you.
Speaking of which, I hit my 1 year diagnosis anniversary a couple of weeks ago and it came and went with very little recognition. The day before I was thinking to myself that it was a pretty significant day in my life, but when it actually came, I didn't thing about it once. In fact, it was only a couple of days later when I realized that it had already come and gone. I think that's a good thing though. I take that as me moving on with my life with other things growing in importance, while, cancer takes a back. What a year it has been.
Work has been great. It has been a little more difficult then I thought to get back into the proactive mode which is what a lot of what my job entails, but it is starting to come back. Not like riding a bike, but I definitely feel myself getting back in the groove. Working from home and slowly easing back into normalcy has been going very well. I actually feel more productive at home then I do in the office. Never thought that would be the case. Regardless, it has been a great boost for me both mentally and physically. Just keeping my mind off of cancer and feeling bad does wonders for the old noggin. Once again, I can't thank Keith and Rich enough for their flexibility in this whole situation.
US had a hell of a shot at shocking the world in the Confederations Cup, but just fell short to the mighty Brazil after going up 2-0 at the half. But they are just too damn good and put 3 on us in the second half to win it yet again. With all that said, hats off to the US team for taking down Egypt, Spain and putting together a great half against Brazil. Can't wait for the world cup.
Labs have been consistently good with my white cell count right where it needs to be. Docs are loving that which brings me closer and closer to being able to travel again. That will be the point where for me, things are back to as normal as they ever will be. Hopefully that means I can travel domestically in the next couple of months and internationally by the end of the year. Fingers are crossed.
Well that should just about bring you up to speed. Thanks again for reading and for the never ending and seemingly bottomless support. You are all amazing in so many way and I can't express what that does for me. Please take care of yourselves and have a great time celebrating our nations birthday this weekend. 3 day weekend...yeah baby. I haven't celebrated having a day off in quite some time and it feels pretty damn good.
Since my last posting, I've been feeling well but have found myself on a roller coaster of fatigue. I haven't been exercising much because of everything going on, but I still find myself getting really tired at times. There are a few times a week where I will find myself literally falling asleep where I sit. This is usually around 6 or 7 at night, so I have to do my best to stay awake. If succumb to the dreaded evening nap, there is no way I'll get to sleep later that night. There are even times where I'll be out to dinner and falling asleep at the table. It just hits me out of the blue and down I go. I'll be honest with you though, I'll take that any day over the bouts of nausea or just the overall awful feeling days I used to have. Those days are the worst and luckily they seem to be down to just a couple of days a week as opposed to the typical 5 days a week. Those are the days that just tear you down physically, mentally and emotionally and also affect the people close to me. Cancer is a very contagious disease. Contagious from the standpoint that other people aren't getting what I have, but they are still feeling the pains of what I'm going through. All I can do is apologize to those loved ones, family and friends. After a year you'd be surprised at how worn down this makes you.
Speaking of which, I hit my 1 year diagnosis anniversary a couple of weeks ago and it came and went with very little recognition. The day before I was thinking to myself that it was a pretty significant day in my life, but when it actually came, I didn't thing about it once. In fact, it was only a couple of days later when I realized that it had already come and gone. I think that's a good thing though. I take that as me moving on with my life with other things growing in importance, while, cancer takes a back. What a year it has been.
Work has been great. It has been a little more difficult then I thought to get back into the proactive mode which is what a lot of what my job entails, but it is starting to come back. Not like riding a bike, but I definitely feel myself getting back in the groove. Working from home and slowly easing back into normalcy has been going very well. I actually feel more productive at home then I do in the office. Never thought that would be the case. Regardless, it has been a great boost for me both mentally and physically. Just keeping my mind off of cancer and feeling bad does wonders for the old noggin. Once again, I can't thank Keith and Rich enough for their flexibility in this whole situation.
US had a hell of a shot at shocking the world in the Confederations Cup, but just fell short to the mighty Brazil after going up 2-0 at the half. But they are just too damn good and put 3 on us in the second half to win it yet again. With all that said, hats off to the US team for taking down Egypt, Spain and putting together a great half against Brazil. Can't wait for the world cup.
Labs have been consistently good with my white cell count right where it needs to be. Docs are loving that which brings me closer and closer to being able to travel again. That will be the point where for me, things are back to as normal as they ever will be. Hopefully that means I can travel domestically in the next couple of months and internationally by the end of the year. Fingers are crossed.
Well that should just about bring you up to speed. Thanks again for reading and for the never ending and seemingly bottomless support. You are all amazing in so many way and I can't express what that does for me. Please take care of yourselves and have a great time celebrating our nations birthday this weekend. 3 day weekend...yeah baby. I haven't celebrated having a day off in quite some time and it feels pretty damn good.
Monday, June 1, 2009
Day + 221
So here I sit over 220 days since my transplant, and it's just amazing to look back and reflect on the road so far. So much has happened since then, and even more since this all started close to a year ago. Chapters that were opened are now being closed, and its happening quickly. It started with us moving out of the beach house in San Diego a few weeks ago, followed by us moving back into Evey's place in Costa Mesa...and it continued today with me going back to work full time. I'll be honest with you, I have had my thoughts, more like doubts about going back so early. They have been swirling in my head over the past few weeks, but after today I know it was the right call. No doubt I will have some difficult days to get through in the upcoming weeks and months, but life would be too easy without difficult days. I am just really lucky that I work for a company that places value on it's associates well being, and I have seen and experienced that personally from the top of the org chart on down. I can't speak enough about how supportive, flexible and understanding everyone has been and it really has had a lot to do with my recovery. Not having to worry about your job or messing up your career while going through something like this just makes the whole situation that much easier to get through, and that is why I have been able to go back to work within a year of coming down with this illness. Rich, Keith, Chris and everyone else, thank you!
From a risk perspective, I'll be ok. I am going to slowly ease into it by working from home for the first couple of months. I'll be going in for meetings, presentations and things like that, but for the most part I'll be working from the house. These were the stipulations laid out by my doctors to avoid any unnecessary risk to my immune system while it still is building back up to normal strength. The office environment can be a petrie dish of bacteria and infection which your immune systems can usually fight off. Mine wouldn't stand a chance if truly tested...so until then I'll be keeping my distance. It's too bad because it was really cool being back in the office today. A lot of you might think being out of work for a year would be a great thing, but I can tell you from experience it isn't. Cashing checks with the statue of liberty on them and not feeling like you’re contributing to anything gets very old very quickly. I know, I know, I have had my hands full fighting off the cancer, but that doesn't take away from the empty feeling you get by not working. It eats away at you after a while. These are the thoughts I've been contending with over the past couple of weeks. One thing I didn't want to do was rush back to work because I was bored, but getting the green light from my doctors and being able to slowly adjust back in was reason enough to pull the trigger and close the "Leave of Absence" chapter of this story. And I must tell you it feels pretty damn good. I'm really looking forward to becoming a normal contributing citizen once again.
On the medical side of things all is good. My counts continue to stay within the very good range, which is where they have been for the last month or so. The really good news is that I have been feeling good along with that. I have had a couple of days here and there where things haven't been so good and life has been tough, but for the most part I have been feeling great and slowly feel like I'm getting back to my old self. I unfortunately have a pigment thing working on my face where it looks like I have a sun burn. This is really just a side effect of the medications I'm on in conjunction with the bout of rejection I went through a couple of months ago, but to be honest with you, I could care less. I'll take feeling well and having good counts all day long if means I have to cruise around with a seemingly sun burnt face. After you've gone through things like body changes, weight fluctuations, hair loss, skin rashes, etc, having a bit of a red face is laughable. One of the many lessons I will take away from this whole experience will certainly be how unimportant the physical appearance is compared to that person’s character. Through the amazing actions I witnessed from the people who supported me through all of this, I could see the true beauty of what's inside and conversly how unimportant the outside is. Ok starting to ramble, somebody please push me off the soapbox.
Now comes of course the Light the Night plug. I hope to see you all there because it is going to be quite an event. Here is the link once again for those of you looking to get more information or donate or both. http://pages.lightthenight.org/ocie/OrangeCo09/Floyd1
Thanks for reading everyone and take care of yourselves. Until next time...
From a risk perspective, I'll be ok. I am going to slowly ease into it by working from home for the first couple of months. I'll be going in for meetings, presentations and things like that, but for the most part I'll be working from the house. These were the stipulations laid out by my doctors to avoid any unnecessary risk to my immune system while it still is building back up to normal strength. The office environment can be a petrie dish of bacteria and infection which your immune systems can usually fight off. Mine wouldn't stand a chance if truly tested...so until then I'll be keeping my distance. It's too bad because it was really cool being back in the office today. A lot of you might think being out of work for a year would be a great thing, but I can tell you from experience it isn't. Cashing checks with the statue of liberty on them and not feeling like you’re contributing to anything gets very old very quickly. I know, I know, I have had my hands full fighting off the cancer, but that doesn't take away from the empty feeling you get by not working. It eats away at you after a while. These are the thoughts I've been contending with over the past couple of weeks. One thing I didn't want to do was rush back to work because I was bored, but getting the green light from my doctors and being able to slowly adjust back in was reason enough to pull the trigger and close the "Leave of Absence" chapter of this story. And I must tell you it feels pretty damn good. I'm really looking forward to becoming a normal contributing citizen once again.
On the medical side of things all is good. My counts continue to stay within the very good range, which is where they have been for the last month or so. The really good news is that I have been feeling good along with that. I have had a couple of days here and there where things haven't been so good and life has been tough, but for the most part I have been feeling great and slowly feel like I'm getting back to my old self. I unfortunately have a pigment thing working on my face where it looks like I have a sun burn. This is really just a side effect of the medications I'm on in conjunction with the bout of rejection I went through a couple of months ago, but to be honest with you, I could care less. I'll take feeling well and having good counts all day long if means I have to cruise around with a seemingly sun burnt face. After you've gone through things like body changes, weight fluctuations, hair loss, skin rashes, etc, having a bit of a red face is laughable. One of the many lessons I will take away from this whole experience will certainly be how unimportant the physical appearance is compared to that person’s character. Through the amazing actions I witnessed from the people who supported me through all of this, I could see the true beauty of what's inside and conversly how unimportant the outside is. Ok starting to ramble, somebody please push me off the soapbox.
Now comes of course the Light the Night plug. I hope to see you all there because it is going to be quite an event. Here is the link once again for those of you looking to get more information or donate or both. http://pages.lightthenight.org/ocie/OrangeCo09/Floyd1
Thanks for reading everyone and take care of yourselves. Until next time...
Tuesday, May 12, 2009
Day + 201
***PLEASE READ THIS ENTIRE MESSAGE***
Hi everyone, I have an exciting announcement to share with you. The annual Light the Night Walk at Angel Stadium is coming up again on August 22nd. The date this year is a little different from last so please make a note of it. But what I am very excited about is that this year we will be honoring one our best friends, Van Skoglund who passed away unexpectedly earlier this year. He captained our team the last time around and did an outstanding job, so we feel there is no better way to honor Van and carry on his hard work than to walk in his name.
I know from time to time I forward charitable opportunities to you guys and they are all for worthy causes. The idea has always been to throw it out to you all and let you decide what you want to do with it. This charity on the other hand is really the mothership of all blood cancer charities so if you are inclined to donate, this is a great place to do it. We are looking to get a bigger group together this year than last so as always everyone is invited. Topping last year is going to be tough but we can do it. If you were there then you know how great of a time it was and there is no doubt this year won’t be the same, but we can’t do it without you. Let’s do our best to make this a huge success. Below is a message from Cindy Skoglund, Van’s Mom who is going to captain this year’s walk, as well as a couple of easy links to either register as a team member or simply donate.
To register for 'Van's Walking Warriors', go to:
http://pages.lightthenight.org/ocie/OrangeCo09/VansWalkingWarriors
To enter and make a donation, go to:
http://pages.lightthenight.org/ocie/OrangeCo09/Floyd1
Cindy’s message:
Please join 'Van’s Walking Warriors' as we gather in support of our good friend, Kurt Thallmayer, and this very worthy fundraiser - Leukemia & Lymphoma Society Light the Night at Angel Stadium in Anaheim on Saturday, August 22, 2009.
We will walk as Van’s Warriors against Leukemia and Lymphoma and in honor of Van for the work he did for this very worthy group and the love he gave to all of us. As your team captain and Van’s mother, I am honored to lead our team.
So add this important date to your calendar and join us for some FUN as Van would want. There will be memories made this day as we honor my son, his best friend – Kurt Thallmayer and his family – and the Leukemia & Lymphoma Society as we seek donations to support the research being done against these dreadful diseases.
Plan to come early for food, fun, drinks and more fun! Additional information will be out soon....so pass the word and invite your family and friends and their family and friends, etc.
Thanks and I look forward to seeing you at Angel Stadium on Saturday, August 22, 2009.
Cynthia Skoglund
Manager, Investor Relations
Beckman Coulter, Inc.
714/773-8213
Cell 714/305-7962
Hi everyone, I have an exciting announcement to share with you. The annual Light the Night Walk at Angel Stadium is coming up again on August 22nd. The date this year is a little different from last so please make a note of it. But what I am very excited about is that this year we will be honoring one our best friends, Van Skoglund who passed away unexpectedly earlier this year. He captained our team the last time around and did an outstanding job, so we feel there is no better way to honor Van and carry on his hard work than to walk in his name.
I know from time to time I forward charitable opportunities to you guys and they are all for worthy causes. The idea has always been to throw it out to you all and let you decide what you want to do with it. This charity on the other hand is really the mothership of all blood cancer charities so if you are inclined to donate, this is a great place to do it. We are looking to get a bigger group together this year than last so as always everyone is invited. Topping last year is going to be tough but we can do it. If you were there then you know how great of a time it was and there is no doubt this year won’t be the same, but we can’t do it without you. Let’s do our best to make this a huge success. Below is a message from Cindy Skoglund, Van’s Mom who is going to captain this year’s walk, as well as a couple of easy links to either register as a team member or simply donate.
To register for 'Van's Walking Warriors', go to:
http://pages.lightthenight.org/ocie/OrangeCo09/VansWalkingWarriors
To enter and make a donation, go to:
http://pages.lightthenight.org/ocie/OrangeCo09/Floyd1
Cindy’s message:
Please join 'Van’s Walking Warriors' as we gather in support of our good friend, Kurt Thallmayer, and this very worthy fundraiser - Leukemia & Lymphoma Society Light the Night at Angel Stadium in Anaheim on Saturday, August 22, 2009.
We will walk as Van’s Warriors against Leukemia and Lymphoma and in honor of Van for the work he did for this very worthy group and the love he gave to all of us. As your team captain and Van’s mother, I am honored to lead our team.
So add this important date to your calendar and join us for some FUN as Van would want. There will be memories made this day as we honor my son, his best friend – Kurt Thallmayer and his family – and the Leukemia & Lymphoma Society as we seek donations to support the research being done against these dreadful diseases.
Plan to come early for food, fun, drinks and more fun! Additional information will be out soon....so pass the word and invite your family and friends and their family and friends, etc.
Thanks and I look forward to seeing you at Angel Stadium on Saturday, August 22, 2009.
Cynthia Skoglund
Manager, Investor Relations
Beckman Coulter, Inc.
714/773-8213
Cell 714/305-7962
Sunday, May 10, 2009
Day + 199
Happy Mother's Day Mom, Sonia, Josie, Paulina, Trina and anyone else I may have missed. Can't wait to get over to the Phoenix Club and celebrate in style.
Well I can't say a whole lot has happened since my last message except more soreness from my push back into the world of exercise. This time I decided it was time to get back out on the open road and take Floyd on the running trail I used to do before I got sick. It was an odd feeling knowing that I hadn't done that since my diagnosis. Those are the things you don't think will really resonate but they do. Just sitting there putting my running shoes back on, Floyd in one hand and iPod in the other and running in the open air again...I don't know, it just gave me a very weird feeling. You try not to think about it very often, but it's the little things like that that make you realize you lost a full year of your life to this illness. It's actually not fair to say lost because believe it or not, some very good things have come out of this, so lost probably isn't the right word, but I think you get the picture. Anyway, it was an unbelievable run with Floyd and again, I paid for it dearly for days. In fact I was hoping to try to get out again this morning for run number 2, but no can do. Floyd will have to settle for a walk. I'm still way too sore.
On the medical side of things my counts actually got better week over week which says a lot because my counts last week were the best they have been since this started. I can only hope that things continue to trend this way. My immune system is the strongest it has been since diagnosis and my hematocrit is slowly rising to the point where I am approaching the norm. I couldn't be happier with this as well as my doctors. I can't say that has translated over to how I actually feel, but I'd rather feel bad and have great counts than feel good and have my counts in the toilet. Mornings are definitely the worst to deal with then I can only hope things get better from there. Sometimes they do and sometimes I'm stuck with it all day. Those are the days that really get to me mentally, but that's when I have to try my hardest to stay on point and remember that things could be a hell of a lot worse in my world. I try to keep the mortality thoughts out of my mind as much as possible, but every now and then I have to remind myself that there are people dying every day from this disease, and I am one of the blessed, lucky, fortunate, whatever you want to call it, ones who has been given a second chance. You'd think that is enough to pull yourself out of it. Sometimes yes, sometimes no, but the bottom line is I am here, living, breathing and most of the time smiling...and things ARE getting better.
That's about it for today. If you guys have any time, check out the link below. It will take you to a team in training website where people are doing 200 mile + bike rides for the sake of finding a cure for blood diseases like mine. Pretty amazing stuff. Any help or support you can throw their way would be really appreciated by everyone involved.
Take care everyone and again, happy Mother's Day to all of you mothers out there.
http://pages.teamintraining.org/sf/ambbr09/jmagee
Well I can't say a whole lot has happened since my last message except more soreness from my push back into the world of exercise. This time I decided it was time to get back out on the open road and take Floyd on the running trail I used to do before I got sick. It was an odd feeling knowing that I hadn't done that since my diagnosis. Those are the things you don't think will really resonate but they do. Just sitting there putting my running shoes back on, Floyd in one hand and iPod in the other and running in the open air again...I don't know, it just gave me a very weird feeling. You try not to think about it very often, but it's the little things like that that make you realize you lost a full year of your life to this illness. It's actually not fair to say lost because believe it or not, some very good things have come out of this, so lost probably isn't the right word, but I think you get the picture. Anyway, it was an unbelievable run with Floyd and again, I paid for it dearly for days. In fact I was hoping to try to get out again this morning for run number 2, but no can do. Floyd will have to settle for a walk. I'm still way too sore.
On the medical side of things my counts actually got better week over week which says a lot because my counts last week were the best they have been since this started. I can only hope that things continue to trend this way. My immune system is the strongest it has been since diagnosis and my hematocrit is slowly rising to the point where I am approaching the norm. I couldn't be happier with this as well as my doctors. I can't say that has translated over to how I actually feel, but I'd rather feel bad and have great counts than feel good and have my counts in the toilet. Mornings are definitely the worst to deal with then I can only hope things get better from there. Sometimes they do and sometimes I'm stuck with it all day. Those are the days that really get to me mentally, but that's when I have to try my hardest to stay on point and remember that things could be a hell of a lot worse in my world. I try to keep the mortality thoughts out of my mind as much as possible, but every now and then I have to remind myself that there are people dying every day from this disease, and I am one of the blessed, lucky, fortunate, whatever you want to call it, ones who has been given a second chance. You'd think that is enough to pull yourself out of it. Sometimes yes, sometimes no, but the bottom line is I am here, living, breathing and most of the time smiling...and things ARE getting better.
That's about it for today. If you guys have any time, check out the link below. It will take you to a team in training website where people are doing 200 mile + bike rides for the sake of finding a cure for blood diseases like mine. Pretty amazing stuff. Any help or support you can throw their way would be really appreciated by everyone involved.
Take care everyone and again, happy Mother's Day to all of you mothers out there.
http://pages.teamintraining.org/sf/ambbr09/jmagee
Tuesday, May 5, 2009
Day + 195
And yet another week passes on this unreal, surreal, crazy, whatever you want to call it road, but the good news is it wasn’t that bad of a week. Given everything that has transpired over the last few weeks, I’m happy to say I didn’t get hit nearly as bad as expected by my new round of meds. The steroids on the other hand have taken a bit of a toll on me. Sleep is something I really enjoy which has been severely hampered over the past 10 days. Luckily I’ve got a bottle of Melatonin to help me through that which is a phenomenal natural pill which actually works. I’ve always been of the opinion that natural remedies are hocus pocus but after this I’m on board, especially given the fact that they are granting me precious hours of sleep. So that’s the sleep side of the coin. The flip side of that coin is how these meds have affected my moods and behavior. It’s funny, in an egotistical sort of way, I've always thought that there was no way a pill could affect my mental state, but it can…and it did, just ask Evey. Like the poor girl hasn’t already been through enough this year with having to live in a hospital fold out chair for 6 months, relocate to San Diego in a moments notice, rejuggle her work life, sacrifice family and friends time, the list goes on and on. You can now add having to navigate through my mood swings on top of all of that. Luckily they haven’t been all that bad, but there have been a few and those have been very difficult to control. Most of the time I can feel it sweeping over me and make a quick mental course correction to get through it, but as I said, a couple got a way from me. If the slow breathing, trying to talk myself out of it, rationalizing that this is only a pill, yada yada yada doesn’t work, I have to simply try my absolute hardest to keep a level head and get through it. I honestly don’t know what’s worse, having to actually deal with the sporadic physical pain I get hit with now and then, or the mental pain knowing I’m being a total jerk to the one person I should be treating with the most love, respect and affection. I can only hope that even my minimal frequency of these episodes goes down quickly and things can get back to normal…or whatever normal is.
On another note, I had a great week from an exercise standpoint. Stepped foot in the gym for the first time in a year and it felt great. I had to be very careful about what I touched and what I used, but it was a great workout. I ran for a mile on the treadmill and then was able to squeeze in about 15 minutes of weights which just felt amazing. It left me with a feeling I hadn’t felt in quite some time and quite honestly missed much more than I thought. I’m really looking forward to getting back in there. The next day I went on a 2 ½ hour hike through the hills off of Ortega Hwy with Evey and my family which just about killed me, but again, loved every minute of it. To close out the exercise trifecta, I took part in a 5k walk on Sunday morning for the Pediatric Cancer Research Foundation. As odd as it sounds, I felt alright that day. I figured I would start to feel it by then, but I didn’t. I felt great but definitely needed the rest of the day to relax and recover. Now Monday on the other hand…that is a different story. I woke up Monday morning and could barley walk. From my hips down to my toes, utter pain and agony throughout, but it’s the good pain and agony. The kind that says you had a hell of a workout but now it’s time to chill. These three days of exercise gave me a great taste of what life used to be. One that I had forgotten completely but don’t intend on forgetting again. It’s a great step for me mentally knowing that the time is right and I can start the process of taking back the valuable pieces of my life that were stripped away this time last year. I can’t wait to get going, and yes, moderation is my best friend.
On the blood counts front, things couldn’t be better. In fact they are the best they have been since my diagnosis. My white blood cell count jumped back up to 7.6 which is right where it needs to be to maintain a strong immune system My hemoglobin is sitting at 13.8 which is the highest it has been in a while and my hematocrit is at 41.8. I haven’t been over 40 since I was diagnosed so it is great to see those numbers. Hematocrit is a good way to measure my potential for endurance, so given those three days of exercise, timing really couldn’t be better. Hopefully it turns into a trend and not just a one week spike. Time will tell.
That’s about all I have. There is a lot going on, some positive and some not so positive, but for the most part things are good. I’ve got the best fiancé, family and friends anyone could ever ask for. Once you know that, it gets that much easier. As always, take care, thanks for reading and we'll catch up again soon.
On another note, I had a great week from an exercise standpoint. Stepped foot in the gym for the first time in a year and it felt great. I had to be very careful about what I touched and what I used, but it was a great workout. I ran for a mile on the treadmill and then was able to squeeze in about 15 minutes of weights which just felt amazing. It left me with a feeling I hadn’t felt in quite some time and quite honestly missed much more than I thought. I’m really looking forward to getting back in there. The next day I went on a 2 ½ hour hike through the hills off of Ortega Hwy with Evey and my family which just about killed me, but again, loved every minute of it. To close out the exercise trifecta, I took part in a 5k walk on Sunday morning for the Pediatric Cancer Research Foundation. As odd as it sounds, I felt alright that day. I figured I would start to feel it by then, but I didn’t. I felt great but definitely needed the rest of the day to relax and recover. Now Monday on the other hand…that is a different story. I woke up Monday morning and could barley walk. From my hips down to my toes, utter pain and agony throughout, but it’s the good pain and agony. The kind that says you had a hell of a workout but now it’s time to chill. These three days of exercise gave me a great taste of what life used to be. One that I had forgotten completely but don’t intend on forgetting again. It’s a great step for me mentally knowing that the time is right and I can start the process of taking back the valuable pieces of my life that were stripped away this time last year. I can’t wait to get going, and yes, moderation is my best friend.
On the blood counts front, things couldn’t be better. In fact they are the best they have been since my diagnosis. My white blood cell count jumped back up to 7.6 which is right where it needs to be to maintain a strong immune system My hemoglobin is sitting at 13.8 which is the highest it has been in a while and my hematocrit is at 41.8. I haven’t been over 40 since I was diagnosed so it is great to see those numbers. Hematocrit is a good way to measure my potential for endurance, so given those three days of exercise, timing really couldn’t be better. Hopefully it turns into a trend and not just a one week spike. Time will tell.
That’s about all I have. There is a lot going on, some positive and some not so positive, but for the most part things are good. I’ve got the best fiancé, family and friends anyone could ever ask for. Once you know that, it gets that much easier. As always, take care, thanks for reading and we'll catch up again soon.
Wednesday, April 22, 2009
Day + 182
So I guess all good things must come to an end, especially when you’re dealing with cancer. Yes, things were going very well and everything was looking up. Counts were good, I felt like I was getting stronger and my doctors were peeling back my immuno-suppressive meds which are all very good signs. Well it’s like they say, for every two steps forward you’re probably going to have to take one step back. What the hell am I talking about you ask? Well, that pesky little sun irritation on my skin reared it’s ugly head and turned into a major problem over the course of one week. It has taken the shape of full blown rejection which needs to be aggressively taken care of now. That means my immuno-suppression drugs go back up to original levels, in addition to adding another one that I’ve never been on before. It also means that I have to start taking a crazy ass steroid pill. As a result of the steroid, I have to go back onto another drug I was completely taken off of over two months ago. So the end result is that I am on more medication now than I was when I first exited the hospital, with a page long list of side effects that go along with them. Side effects that destroy my immune system, totally mess with my moods, play with my blood sugar levels and last but not least, make it impossible to get a good night’s sleep without adding more medication, which I have yet to do. And if that’s not enough, it is throwing my blood counts all out whack so I can’t even get a good reading of what’s going on there. So as you can see, life is good.
Now I know I’m going to get through this and that all of this stuff is just another step I have to take on the road to a full recovery from this disease, but I’ll tell you, this is a massive step backwards and is a tough pill to swallow…no pun intended. It’s a strong punch in the stomach to have to take something like this. The good news is I’ll finally get rid of this skin irritation which literally spread all over my body. The bad news is all the stuff written above that has to go along with that. The bottom line is this degree of rejection cannot be messed around with so what has to be done will be done.
Once again, thank you guys for every ounce of support you have thrown and continue to throw my way. There are times where I unbelievably feel like I’m alone through all of this. And I say unbelievably because with everything I get from Evey, my family, my friends, etc., alone is the furthest thing I should be feeling. I don’t know what’s happening with me mentally, but it seems as though the further along I get through this, the more vulnerable I feel, and that is totally counterintuitive when you think that the further along I get through this, the closer I am getting to recovery. It’s all just getting more and more weird in my world which is sometimes cool, but other times…not so much. Who am I kidding, I wouldn’t wish this upon my worst enemy. Even still with all of that said, I’m out of the hospital at home with my fiancé, my family, my friends and my dog. Those are the only things necessary that should keep a man smiling…so I’m still smiling. My weight is where it should be, I can walk my dog every day and I can eat just about anything I want (though that is changing). It's been 182 days since that Swedish angel on my shoulder generously donated his stem cells and all is going relatively well. Life really isn’t all that bad, I just need to get through this, and I will.
That’s about it for now. Take care of yourselves and we’ll check in again soon with hopefully solid progress to report on. Not hopefully, definitely! Later on guys.
Now I know I’m going to get through this and that all of this stuff is just another step I have to take on the road to a full recovery from this disease, but I’ll tell you, this is a massive step backwards and is a tough pill to swallow…no pun intended. It’s a strong punch in the stomach to have to take something like this. The good news is I’ll finally get rid of this skin irritation which literally spread all over my body. The bad news is all the stuff written above that has to go along with that. The bottom line is this degree of rejection cannot be messed around with so what has to be done will be done.
Once again, thank you guys for every ounce of support you have thrown and continue to throw my way. There are times where I unbelievably feel like I’m alone through all of this. And I say unbelievably because with everything I get from Evey, my family, my friends, etc., alone is the furthest thing I should be feeling. I don’t know what’s happening with me mentally, but it seems as though the further along I get through this, the more vulnerable I feel, and that is totally counterintuitive when you think that the further along I get through this, the closer I am getting to recovery. It’s all just getting more and more weird in my world which is sometimes cool, but other times…not so much. Who am I kidding, I wouldn’t wish this upon my worst enemy. Even still with all of that said, I’m out of the hospital at home with my fiancé, my family, my friends and my dog. Those are the only things necessary that should keep a man smiling…so I’m still smiling. My weight is where it should be, I can walk my dog every day and I can eat just about anything I want (though that is changing). It's been 182 days since that Swedish angel on my shoulder generously donated his stem cells and all is going relatively well. Life really isn’t all that bad, I just need to get through this, and I will.
That’s about it for now. Take care of yourselves and we’ll check in again soon with hopefully solid progress to report on. Not hopefully, definitely! Later on guys.
Tuesday, April 14, 2009
Day + 174
Good morning everyone. I usually write these late at night so it's kind of weird saying that. I guess I'll start by saying I'm happy I was able to give you all a nice laugh. It seems you all enjoy hearing about me wallowing in pain and misery. I know, I know, I brought that all upon myself, but how about a little sympathy for the kid. Of course I'm joking. I think I got the biggest laugh of all out of that situation. And trust me, even laughing soon turned into crying due to the extreme pain I was in. Anyhow, I'm glad you were all entertained by that. I can't say I did anything like that during this period so my muscles have been nice and normal.
Things have been good, but I have been battling an outbreak on my skin which is a reaction to the sun caused by my medication and the chemo I went through. Luckily these aren't abrasions or anything like that, it basically shows up as redness, but it's all over my stomach, chest, back, shoulders and face. It is a little bit itchy but luckily very manageable. My doctors took a skin biopsy out of my back last week to make sure it is GVHD (Graft vs. Host Disease) which is a technical term for rejection. Yes it is rejection, but it is nothing to be too concerned about. Of course if I don't do anything about it, it can spread and get worse, but I am treating it regularly with a strong cream so it should be gone in no time. It's been here for a couple of weeks so I'm hoping the end is near. We shall see.
As I said above, things have been good but I still have some bad days mixed in every now and then. As I get further and further away from my transplant date, it gets more and more frustrating for me to have these bad days. I know they are a part of the process and I just have to deal with them and hope they become more and more infrequent. With that said, my medication has a lot to do with how frequent those bad days are and unfortunately, with this skin situation going on, some of my medications have been increased. This will hopefully be short term and I'll be on the road to lowering my meds again in no time.
As far as my counts go, they dropped a bit last week which goes hand in hand with the GVHD I'm experiencing. My white blood cells dropped from 5 to 4.2 with my platelets following suit going from 191 to 157. My red blood cells counts and hematocrit stayed in the same range of 12 and 36 respectively. I fully expect to have these counts go back to normal as I fix this GVHD problem.
Well my friends, it's another beautiful day in sunny so cal so make sure you get out there at some point today and enjoy it. You owe it to yourself. Take care everyone and make sure you either start smiling or keep smiling. We'll catch up again soon.
Things have been good, but I have been battling an outbreak on my skin which is a reaction to the sun caused by my medication and the chemo I went through. Luckily these aren't abrasions or anything like that, it basically shows up as redness, but it's all over my stomach, chest, back, shoulders and face. It is a little bit itchy but luckily very manageable. My doctors took a skin biopsy out of my back last week to make sure it is GVHD (Graft vs. Host Disease) which is a technical term for rejection. Yes it is rejection, but it is nothing to be too concerned about. Of course if I don't do anything about it, it can spread and get worse, but I am treating it regularly with a strong cream so it should be gone in no time. It's been here for a couple of weeks so I'm hoping the end is near. We shall see.
As I said above, things have been good but I still have some bad days mixed in every now and then. As I get further and further away from my transplant date, it gets more and more frustrating for me to have these bad days. I know they are a part of the process and I just have to deal with them and hope they become more and more infrequent. With that said, my medication has a lot to do with how frequent those bad days are and unfortunately, with this skin situation going on, some of my medications have been increased. This will hopefully be short term and I'll be on the road to lowering my meds again in no time.
As far as my counts go, they dropped a bit last week which goes hand in hand with the GVHD I'm experiencing. My white blood cells dropped from 5 to 4.2 with my platelets following suit going from 191 to 157. My red blood cells counts and hematocrit stayed in the same range of 12 and 36 respectively. I fully expect to have these counts go back to normal as I fix this GVHD problem.
Well my friends, it's another beautiful day in sunny so cal so make sure you get out there at some point today and enjoy it. You owe it to yourself. Take care everyone and make sure you either start smiling or keep smiling. We'll catch up again soon.
Thursday, April 2, 2009
Day + 161
Hi everyone-
once again, I'll start by saying thank you all for your messages of support. I can't get enough of them. So it was a rough couple of weeks that I wrote about in my last posting, but I'm happy to say that those days went away soon after that time and it has been smooth sailing since then. I have had a couple of tough days sprinkled in there which will always be the case, but this has been a good stretch of pain free days. Well, that's not all together true. Right now I am more sore then I have ever been in my entire life...and I mean from head to toe sore. So bad that I got out of bed this morning at 11:30am after waking up at 7:30am. Not because I wanted to lay in bed for four hours, but because I seriously couldn't physically get up. I was laughing at myself because I was in so much pain.
Now hold your sympathy because it has nothing to do with my Leukemia. For the first time in over a year I went and played 18 holes of golf with a couple of old friends. I figured I'd be sore, but had no idea it would be anything like this. I guess when you swing the club 118 times with muscles you haven't used in close to a year, you're asking for trouble. Yes, 118 times. To add on to my stupidity, I thought it would be a good idea to do some push ups later that night. That turned out to be a horrible idea because it just added on to the pain in my upper body. It is seriously even difficult for me to sit here a type this message right now. Not even kidding when I say this is by far the most muscle pain I have ever experienced. All I can do is laugh and be happy with the fact that I was able to get through a full round of golf. I'm really looking forward to getting out there again even though I stunk up the place.
From a medical perspective things still remain on track and couldn’t be better. My white blood cells are at 5.0 with my hematecrit jumping up a bit to 36.7 which interestingly enough shows what my endurance should be. Right now I’m at about 70% of my total endurance which is up a bit. My ANC is at 2.6 which is still good but a little lower than I like. ANC shows how susceptible I am to infection. It takes a little more into consideration than just straight white blood cells. On top of all that, my doctor continues to cut back on my immuno suppression medication which is a great sign. Those are the anti rejection drugs so that just tells me my doctors are feeling really good about the fact that my donors stem cells are going to stick with little or no fight from my body.
So it’s all good news my friends. Thank you again for staying up on my road to recovery. As you can see things couldn’t be better on the medical side…the important side, and I am feeling great, aside from my excruciating muscle pain, but again all I can do is laugh about that. Please take good care of yourselves and we’ll catch up soon.
once again, I'll start by saying thank you all for your messages of support. I can't get enough of them. So it was a rough couple of weeks that I wrote about in my last posting, but I'm happy to say that those days went away soon after that time and it has been smooth sailing since then. I have had a couple of tough days sprinkled in there which will always be the case, but this has been a good stretch of pain free days. Well, that's not all together true. Right now I am more sore then I have ever been in my entire life...and I mean from head to toe sore. So bad that I got out of bed this morning at 11:30am after waking up at 7:30am. Not because I wanted to lay in bed for four hours, but because I seriously couldn't physically get up. I was laughing at myself because I was in so much pain.
Now hold your sympathy because it has nothing to do with my Leukemia. For the first time in over a year I went and played 18 holes of golf with a couple of old friends. I figured I'd be sore, but had no idea it would be anything like this. I guess when you swing the club 118 times with muscles you haven't used in close to a year, you're asking for trouble. Yes, 118 times. To add on to my stupidity, I thought it would be a good idea to do some push ups later that night. That turned out to be a horrible idea because it just added on to the pain in my upper body. It is seriously even difficult for me to sit here a type this message right now. Not even kidding when I say this is by far the most muscle pain I have ever experienced. All I can do is laugh and be happy with the fact that I was able to get through a full round of golf. I'm really looking forward to getting out there again even though I stunk up the place.
From a medical perspective things still remain on track and couldn’t be better. My white blood cells are at 5.0 with my hematecrit jumping up a bit to 36.7 which interestingly enough shows what my endurance should be. Right now I’m at about 70% of my total endurance which is up a bit. My ANC is at 2.6 which is still good but a little lower than I like. ANC shows how susceptible I am to infection. It takes a little more into consideration than just straight white blood cells. On top of all that, my doctor continues to cut back on my immuno suppression medication which is a great sign. Those are the anti rejection drugs so that just tells me my doctors are feeling really good about the fact that my donors stem cells are going to stick with little or no fight from my body.
So it’s all good news my friends. Thank you again for staying up on my road to recovery. As you can see things couldn’t be better on the medical side…the important side, and I am feeling great, aside from my excruciating muscle pain, but again all I can do is laugh about that. Please take good care of yourselves and we’ll catch up soon.
Monday, March 23, 2009
Day + 150
Man, I just can't tell you how stoked (happy) I get in reading the messages back to me. It’s pretty unreal for me to see how my experience has impacted so many people’s lives. I'll leave it at that but thank you all very much again.
So believe it or not, it’s been 150 days since that unbelievably generous man from Sweden, the angel on my shoulder, hooked me up with his stem cells. I just got my chymerism test results back today and all is still good, which means if you look at a full sample of my bone marrow, 100% of it is made up of my donor's marrow...and that is exactly what we want. It has been that way since they did the first test, four times ago and it remains constant through day 150 which is pretty cool.
I just wish the chymerisms report, the blood test results, the bone marrow biopsy’s, etc. all meant that if they were good then I felt good, but no sir, it does not work that way. I did have a few good days this week, today being one of them, but unfortunately the balance of the week didn’t go so well. A few of the days it was the same old muscle soreness and tightness, where going down the stairs is an adventure in itself. And the other two days I felt like I had flu symptoms which I haven’t had to deal with for a while. The whole deal…shakes, sweats, feeling just awful. Like I said, the whole nine yards. I did take my temperature and didn’t have a fever so all was fine. It was just another small stretch that I had to get through. And yes, if you picked up on the fact that I took my own temperature, and not my wife to be Evey, you were right on. I have had to do without her priceless and invaluable support and love for the past three weeks or so. Let me be fair though, she was nice enough to come home for a couple of days between trips. I’m just kidding of course. As much as I would love to have her here with me, she is really enjoying her time in the Philippines. I’m just happy she gets to experience the unbelievable qualities of that place first hand, not having to go on my word. Anyway, I got off on a bit of a tangent there. It’s certainly tough having her gone for so long, but I get to have her back in a few days so I am looking forward to that.
It was a rough week but honestly, reading through what you guys wrote really helped me get through it all. It also helps knowing that my bad days have nothing to do with my long term recovery. As horrible as those days are, knowing that all I have to do is power through them with the knowledge in the back of my head that it’s not holding up my recovery, it just makes it easier to deal. Another thing that makes it all easy to deal with, for which I feel so lucky and thankful for, is my job. I had a quick informal meeting with my boss this last week when I popped into the office, and he basically told me as he always has, that my health is the most important thing and Ingram will do whatever necessary to ensure that not an ounce of stress will come from work. Of course everyone knows that my health is the most important thing, as it should be with everyone, but it’s great to hear that from the company you work for. It’s just another reason why I am the luckiest person in the world for the support system I have. Thanks Rich!
So that’s pretty much it my friends. I thank you all once again for the unreal love and support you never cease to send my way and I wish you all a great week. I know I am going to have one, even if I do have a couple of rough days thrown in there. 150 days baby, let’s keep this train rollin’…
So believe it or not, it’s been 150 days since that unbelievably generous man from Sweden, the angel on my shoulder, hooked me up with his stem cells. I just got my chymerism test results back today and all is still good, which means if you look at a full sample of my bone marrow, 100% of it is made up of my donor's marrow...and that is exactly what we want. It has been that way since they did the first test, four times ago and it remains constant through day 150 which is pretty cool.
I just wish the chymerisms report, the blood test results, the bone marrow biopsy’s, etc. all meant that if they were good then I felt good, but no sir, it does not work that way. I did have a few good days this week, today being one of them, but unfortunately the balance of the week didn’t go so well. A few of the days it was the same old muscle soreness and tightness, where going down the stairs is an adventure in itself. And the other two days I felt like I had flu symptoms which I haven’t had to deal with for a while. The whole deal…shakes, sweats, feeling just awful. Like I said, the whole nine yards. I did take my temperature and didn’t have a fever so all was fine. It was just another small stretch that I had to get through. And yes, if you picked up on the fact that I took my own temperature, and not my wife to be Evey, you were right on. I have had to do without her priceless and invaluable support and love for the past three weeks or so. Let me be fair though, she was nice enough to come home for a couple of days between trips. I’m just kidding of course. As much as I would love to have her here with me, she is really enjoying her time in the Philippines. I’m just happy she gets to experience the unbelievable qualities of that place first hand, not having to go on my word. Anyway, I got off on a bit of a tangent there. It’s certainly tough having her gone for so long, but I get to have her back in a few days so I am looking forward to that.
It was a rough week but honestly, reading through what you guys wrote really helped me get through it all. It also helps knowing that my bad days have nothing to do with my long term recovery. As horrible as those days are, knowing that all I have to do is power through them with the knowledge in the back of my head that it’s not holding up my recovery, it just makes it easier to deal. Another thing that makes it all easy to deal with, for which I feel so lucky and thankful for, is my job. I had a quick informal meeting with my boss this last week when I popped into the office, and he basically told me as he always has, that my health is the most important thing and Ingram will do whatever necessary to ensure that not an ounce of stress will come from work. Of course everyone knows that my health is the most important thing, as it should be with everyone, but it’s great to hear that from the company you work for. It’s just another reason why I am the luckiest person in the world for the support system I have. Thanks Rich!
So that’s pretty much it my friends. I thank you all once again for the unreal love and support you never cease to send my way and I wish you all a great week. I know I am going to have one, even if I do have a couple of rough days thrown in there. 150 days baby, let’s keep this train rollin’…
Monday, March 16, 2009
Day + 144
Hello everyone, let me start out by saying thank you to the family and friends that sent a message after my last entry. I really appreciate what you all wrote and I'd like you to know it goes a hell of a long way in my recovery. I know what I wrote last week drew a lot of responses, both on this message board and off. I guess I was caught at an emotional time and let it all spill out onto the keyboard. Sometimes it's good to see what is happening a layer or two deeper than just my blood counts. That is what I was hoping to convey in my last posting and based on what I heard from multiple people, that's what was done so I'm happy about that and thanks for your responses.
As difficult as it has been at times, there have been more times by a multiple of three or four where the times have been great. All of the visits to my hospital room from both friends and family, the fact that Evey stayed with me in the hospital every night she was in town, the thoughtful gifts and care packages, the mountain of books and dvd's, the dinners when I got out, I could seriously go on and on. My point is that I don't want you to think it has all been rough like I wrote last week. As terrible as this journey has been, it has also been pretty unbelievable with the outpouring of support, emotions and flat out love. I feel so lucky to have the people around me that I do. I don't want to say it was taken for granted before I came down with this disease, but I was certainly shocked as to what I experienced. I never could have thought the human spirit could shine through the way it did, and I owe everyone a huge debt of gratitude that I don't think I will ever be able to repay. From my family and friends to the people on this blog who read everyday, who I barely even know or knew a long time ago. It has just been unreal and those people have completely overshadowed the rough times I described last week. Those times are real and they are certainly not over yet, but with the support group I just described, there is no doubt I will come out on top of this thing.
As far as my current state goes, things could definitely be better. I’m not sure what it is but my muscles have seemed to grow tight and sore, especially in the morning. For the past week or so, I have been dealing with this and it seriously sucks. It’s difficult for me to get out of bed, and when I finally do it takes me over a minute to make my way down the stairs. For a guy who used to run eight miles at a time, it’s a hard pill to swallow. The worst part is I’m in too much pain to take Floyd out and that breaks my heart. If I drive somewhere he goes with me and we spend a lot of time together lying around the house, but I used to love taking him out for his/our daily walks. I can only hope this will be gone soon and things will get back to normal. I’m confident they will. I meet with my doctor tomorrow so I’ll see what he says about it.
Outside of that, on the medical side, things are going very well as always. My doctor is continuing to pull back on some of my medications which is a great sign. In fact, he has told me that as my medications go away, I should start to feel a lot better on a more consistent basis. I can’t wait for that. My blood markers all look great and are just where they need to be. No big tests on the horizon, just my weekly labs and meetings with my doctor, so all is good. And again, I read every message you guys write me so please keep them coming. I know there a lot of people who read my posting but don’t write anything in return. I’m not sure why but I’d love to hear from you...it really does help. You guys all please take good care of yourselves and make sure you spend your day smiling. If you’re not then you should question what you’re doing. Until next time…
As difficult as it has been at times, there have been more times by a multiple of three or four where the times have been great. All of the visits to my hospital room from both friends and family, the fact that Evey stayed with me in the hospital every night she was in town, the thoughtful gifts and care packages, the mountain of books and dvd's, the dinners when I got out, I could seriously go on and on. My point is that I don't want you to think it has all been rough like I wrote last week. As terrible as this journey has been, it has also been pretty unbelievable with the outpouring of support, emotions and flat out love. I feel so lucky to have the people around me that I do. I don't want to say it was taken for granted before I came down with this disease, but I was certainly shocked as to what I experienced. I never could have thought the human spirit could shine through the way it did, and I owe everyone a huge debt of gratitude that I don't think I will ever be able to repay. From my family and friends to the people on this blog who read everyday, who I barely even know or knew a long time ago. It has just been unreal and those people have completely overshadowed the rough times I described last week. Those times are real and they are certainly not over yet, but with the support group I just described, there is no doubt I will come out on top of this thing.
As far as my current state goes, things could definitely be better. I’m not sure what it is but my muscles have seemed to grow tight and sore, especially in the morning. For the past week or so, I have been dealing with this and it seriously sucks. It’s difficult for me to get out of bed, and when I finally do it takes me over a minute to make my way down the stairs. For a guy who used to run eight miles at a time, it’s a hard pill to swallow. The worst part is I’m in too much pain to take Floyd out and that breaks my heart. If I drive somewhere he goes with me and we spend a lot of time together lying around the house, but I used to love taking him out for his/our daily walks. I can only hope this will be gone soon and things will get back to normal. I’m confident they will. I meet with my doctor tomorrow so I’ll see what he says about it.
Outside of that, on the medical side, things are going very well as always. My doctor is continuing to pull back on some of my medications which is a great sign. In fact, he has told me that as my medications go away, I should start to feel a lot better on a more consistent basis. I can’t wait for that. My blood markers all look great and are just where they need to be. No big tests on the horizon, just my weekly labs and meetings with my doctor, so all is good. And again, I read every message you guys write me so please keep them coming. I know there a lot of people who read my posting but don’t write anything in return. I’m not sure why but I’d love to hear from you...it really does help. You guys all please take good care of yourselves and make sure you spend your day smiling. If you’re not then you should question what you’re doing. Until next time…
Tuesday, March 3, 2009
Day + 132
Let's start with an update on weight watch '09. If you remember, I had an all time low weight of 142 pounds. I am happy to say that my weight as of today is 168 pounds and seems to be climbing every day. Clothes that used to fall off me without a belt are now tight, to the point where I have to unbutton my top button if I have a big meal. My weight before I was diagnosed with AML was 182. It is unbelievable to me that I actually hit 40 pounds below my normal weight. I don’t know. For some reason I’ve been in a very reflective mood lately and it is really messing with me. I don’t know what it is but I have been looking back on some of the really hard times I’ve been through with my sickness and that point where I was at 142 pounds is standing out the most. I can’t tell you how impactful it is to your psyche when you see your body in such bad shape. I just remember standing in front of the mirror without any clothes on and being absolutely shocked. Almost like being punched in the stomach you’re so shocked. That’s all I can do to describe it. My eyes were completely sunk in to my eye sockets. They were dark and almost looked bigger, but that was just because my sockets looked bigger. My shoulder bones and hip bones also stand out. I remember my skin being totally tight around those bones to the point where I was comparing myself to a victim of the holocaust. My arms and legs were as skinny as you ever could have imagined. Overall, my body looked like it was dying, which it was. The cumulative effects of the chemo and radiation therapy really took hold on that last round and did a job on my body. I just remember standing in front of the mirror, looking at the site I just described and breaking down crying. It wasn’t the first time I have cried through this experience, but it was the first time I had doubts I was going to make it through this. That’s not true actually. The first time I didn’t think I was going to make it through this was when they misdiagnosed the type of AML I had. They told me I had M8 which is the worst kind with the highest mortality rate. I lived with that information for a full day before they came in and told us I actually had M1 which is much more treatable. I still remember being in the shower that day before they told me of my actual diagnosis, thinking how I was going to divide up my money, who my belongings would go to, who Floyd would go to, etc. But for some reason I had an eerie calm about me that time, almost like an acceptance. For some reason, the moment I was standing in front of the mirror looking at my decimated body, I was hit much harder. And it still hits me hard today. I think back on those times and I still well up and sometimes just flat out cry. It’s an odd and very humbling feeling when you are forced to face your own mortality. Today my body has filled out and those days seem long gone, but they aren't. They seem to be right at the forefront of my mind.
I don’t know why I’m sharing all of this with you. As I said, I have been in a very reflective mood lately, and in a very weird way I almost feel like I have to respect those times by keeping them close in my thoughts. I am a very long way away from being able to declare victory over this disease and I know there are going to be more tough times ahead, so maybe this is a way of helping me deal with those times. I’m not sure, but I can’t seem to get those thoughts out of my mind.
Ok, I think I’ve rambled long enough and I apologize for that. Let me get into how things are going as of today. From a medical perspective things couldn’t be better and as I wrote above, my weight is right where it needs to be. My labs are just about perfect with my white blood cells over 6 and my ANC over 4. Both of these are the most important markers and both have rebounded very nicely after my last bout of intestinal issues. The other markers I keep track of are also doing very well but no need to share those with you. I can’t say I’m feeling all that well. I am going through a rough patch right now which as always makes life tough. Every muscle and bone in my body hurts and it is really difficult to even get out of bed….but you do. As I’m sure you have been able to figure out if you read most of my messages, my condition goes through cycles where for a week or two I’ll feel great and all will be well, but will soon be followed by a week or two of not feeling well. That is where I am at today, but knowing that this will cycle through as it always does helps. I’ll get through it like I always do and things will be good again soon enough. That’s about all I have guys. Again, sorry for rambling early on but I guess I needed it. You guys all please take good care of yourselves and we’ll catch up soon.
I don’t know why I’m sharing all of this with you. As I said, I have been in a very reflective mood lately, and in a very weird way I almost feel like I have to respect those times by keeping them close in my thoughts. I am a very long way away from being able to declare victory over this disease and I know there are going to be more tough times ahead, so maybe this is a way of helping me deal with those times. I’m not sure, but I can’t seem to get those thoughts out of my mind.
Ok, I think I’ve rambled long enough and I apologize for that. Let me get into how things are going as of today. From a medical perspective things couldn’t be better and as I wrote above, my weight is right where it needs to be. My labs are just about perfect with my white blood cells over 6 and my ANC over 4. Both of these are the most important markers and both have rebounded very nicely after my last bout of intestinal issues. The other markers I keep track of are also doing very well but no need to share those with you. I can’t say I’m feeling all that well. I am going through a rough patch right now which as always makes life tough. Every muscle and bone in my body hurts and it is really difficult to even get out of bed….but you do. As I’m sure you have been able to figure out if you read most of my messages, my condition goes through cycles where for a week or two I’ll feel great and all will be well, but will soon be followed by a week or two of not feeling well. That is where I am at today, but knowing that this will cycle through as it always does helps. I’ll get through it like I always do and things will be good again soon enough. That’s about all I have guys. Again, sorry for rambling early on but I guess I needed it. You guys all please take good care of yourselves and we’ll catch up soon.
Saturday, February 21, 2009
Day + 122
Let me start off my saying happy birthday to my girl. Have a great time tonight with the girls and be careful damn it. I can only imagine what is going to go on tonight...ha.
The cat seems to already be out of the bag as you have seen from a few of the messages, so I might as well make it official. I took a major life step on February 11th and asked Evey to marry me...she said yes. It was a really cool night down in San Clemente at a memorable spot for both Evey and I, right above the pier. We had a beautiful sunset and down on one knee I went. The rest is history my friends. We went and had a cocktail on the pier, had a great dinner at one of our favorite restaraunts in town and ended the night being engaged. We are both really excited to be on this road and I think still a little shocked, but it's good shock. I know I can't wait to spend the rest of my life with her and I truley feel like the luckiest guy in the world. I guess that means it's right...right? Don't answer that, I already know the answer. So there you have it, Evey and I are engaged and we couldn't be happier.
On the medical front it has been a tough couple of weeks. I have been battling headaches and intestinal isses for what seems like two weeks straight. The headaches have been with me since my original diagnosis but since my release from the hospital, they gradually went away to the point where I completely stopped taking medication. Unfortunately they are back and I think it's due to all of the stress I've been dealing with over the past few weeks. The good news is I am betting this is only temporary and they will eventually go away as things normalize a bit in my life. Time will tell on that but I feel pretty good about it.
The intestinal issues have scared me a bit. The situation I am in I can't afford to get any sort of infections or viruses. My immune system is still not strong enough or equipped to handle anything like that. I would have to be hositalized and hit with some heavy antibiotics and whatever else is needed to take out the issue...much like what happened on Superbowl Sunday. Luckily the tests, as of yesterday, have all come back negative so I have been able to avoid that, but it still doesn't take away from the fact that things have sucked. I have felt better over the last couple of days so I can only hope this is on it's way out, but we'll see. Again, only time will tell which seems to be my story as of late.
What it does do is remind me that I am far from being done with this fight. As good as things can get for me, and there have been times where I have felt great, but as good as things can get for me, there could be tough times right around the corner...and for no apparent reason. It's just the roller coaster exerience I have written about many times in the past. I'm still on this damn ride and there really is no end in sight. My body is still dealing with the evils of the chemotherapy and radiation. Whether it comes in the form of Neuropathy which is burning sensations in my feet, headaches or the intestinal issues that have hit lately, I still have that poisen in my system and I have to understand it is going to be there for a while. All I can do is keep my head up and deal with it. Although it did force me to miss a NOFX show the other night which really bummed me out. Oh well, they'll be back.
My counts are all still looking very good which is keeping the doctors happy. My WBC had a pretty significant drop last week due to the stomach issues I had, but they are still in the good range so things are fine there. For me now it's just deaing with the tough times when they hit and keeping the good times in check, knowing that things could get bad at any moment. That's the reality of my life at this point and it ain't all that bad all things considered. I have heard some just tragic Leukemia stories these past couple of weeks. As difficult as it is to hear those stories, it helps me put my own situation into perspective which I could use every now and then.
That's about it for now guys. Better times are right around the corner, I can feel it. Take care of yourselves everyone and we'll catch up soon. -Kurt
The cat seems to already be out of the bag as you have seen from a few of the messages, so I might as well make it official. I took a major life step on February 11th and asked Evey to marry me...she said yes. It was a really cool night down in San Clemente at a memorable spot for both Evey and I, right above the pier. We had a beautiful sunset and down on one knee I went. The rest is history my friends. We went and had a cocktail on the pier, had a great dinner at one of our favorite restaraunts in town and ended the night being engaged. We are both really excited to be on this road and I think still a little shocked, but it's good shock. I know I can't wait to spend the rest of my life with her and I truley feel like the luckiest guy in the world. I guess that means it's right...right? Don't answer that, I already know the answer. So there you have it, Evey and I are engaged and we couldn't be happier.
On the medical front it has been a tough couple of weeks. I have been battling headaches and intestinal isses for what seems like two weeks straight. The headaches have been with me since my original diagnosis but since my release from the hospital, they gradually went away to the point where I completely stopped taking medication. Unfortunately they are back and I think it's due to all of the stress I've been dealing with over the past few weeks. The good news is I am betting this is only temporary and they will eventually go away as things normalize a bit in my life. Time will tell on that but I feel pretty good about it.
The intestinal issues have scared me a bit. The situation I am in I can't afford to get any sort of infections or viruses. My immune system is still not strong enough or equipped to handle anything like that. I would have to be hositalized and hit with some heavy antibiotics and whatever else is needed to take out the issue...much like what happened on Superbowl Sunday. Luckily the tests, as of yesterday, have all come back negative so I have been able to avoid that, but it still doesn't take away from the fact that things have sucked. I have felt better over the last couple of days so I can only hope this is on it's way out, but we'll see. Again, only time will tell which seems to be my story as of late.
What it does do is remind me that I am far from being done with this fight. As good as things can get for me, and there have been times where I have felt great, but as good as things can get for me, there could be tough times right around the corner...and for no apparent reason. It's just the roller coaster exerience I have written about many times in the past. I'm still on this damn ride and there really is no end in sight. My body is still dealing with the evils of the chemotherapy and radiation. Whether it comes in the form of Neuropathy which is burning sensations in my feet, headaches or the intestinal issues that have hit lately, I still have that poisen in my system and I have to understand it is going to be there for a while. All I can do is keep my head up and deal with it. Although it did force me to miss a NOFX show the other night which really bummed me out. Oh well, they'll be back.
My counts are all still looking very good which is keeping the doctors happy. My WBC had a pretty significant drop last week due to the stomach issues I had, but they are still in the good range so things are fine there. For me now it's just deaing with the tough times when they hit and keeping the good times in check, knowing that things could get bad at any moment. That's the reality of my life at this point and it ain't all that bad all things considered. I have heard some just tragic Leukemia stories these past couple of weeks. As difficult as it is to hear those stories, it helps me put my own situation into perspective which I could use every now and then.
That's about it for now guys. Better times are right around the corner, I can feel it. Take care of yourselves everyone and we'll catch up soon. -Kurt
Wednesday, February 11, 2009
Day + 112
Hi everyone. First off, I'd like to thank everyone for their heartfelt condolences about Van. Every one of us is feeling it and I know that everything that has been said and written over the past couple of weeks has helped me.
On the medical side of things, everything is going extremely well. The results from my latest bone marrow biopsy came back in record time and could not have been better. My body is still in 100% remission and there is not a speck of cancer anywhere. There were no signs of immature cancer cells which could be an indicator that there is still a problem, but that looked perfect as well. All in all, the results could not have been better, and as a result they have said that I will not need another bone marrow test for 6 months. That is great for two reasons. The first reason is obvious which is these things are painful as hell and the longer I have to wait for my next one, the better. The second reason is the more important one. The fact that they can wait for six months means they have a huge amount of confidence that I'm good to go for a while and I have very little to worry about in the short term. That is a huge vote of confidence for my health as it relates to the possibility of me relapsing which the doctors are resoundedly betting doesn't happen.
I am feeling better overall. I'm still a lot weaker than I was two weeks ago but I feel myself gaining strength every day. I'm back to walking which is tougher than I thought, but I'm getting there. My legs just don't seem to work together the way they used to. I walk like a beat up old football player, but I'm hoping that with more walking things go back to normal. If I ever want to run again like I used to, that is going to have to get fixed. On another note, I seem to be past the Gastroenteritis which is really a fancy word for the stomach flu. No idea where I picked it up. It could have come from someone close to me who had it or possibly from something I ate. Doesn't really matter to be honest with you. I'm just happy to be past that nightmare. I don't wish that experience upon my worst enemy and I pray I will never have to go through that ever again.
My appetite remains strong and I've gained 12 pounds with more to come. All systems are go my friends and I can only hope I remain on this track. I'm feeling better but also have no illusions that things could turn for the worse at just about anytime. The good news for now is that people tell me I'm looking better and my doctors are telling me my recovery couldn't be going better. How much better could life be? Thanks Van, I couldn't have gotten here without you bro. I have a long way to go but things are looking good. Thanks for reading everyone and please take care of yourselves!
On the medical side of things, everything is going extremely well. The results from my latest bone marrow biopsy came back in record time and could not have been better. My body is still in 100% remission and there is not a speck of cancer anywhere. There were no signs of immature cancer cells which could be an indicator that there is still a problem, but that looked perfect as well. All in all, the results could not have been better, and as a result they have said that I will not need another bone marrow test for 6 months. That is great for two reasons. The first reason is obvious which is these things are painful as hell and the longer I have to wait for my next one, the better. The second reason is the more important one. The fact that they can wait for six months means they have a huge amount of confidence that I'm good to go for a while and I have very little to worry about in the short term. That is a huge vote of confidence for my health as it relates to the possibility of me relapsing which the doctors are resoundedly betting doesn't happen.
I am feeling better overall. I'm still a lot weaker than I was two weeks ago but I feel myself gaining strength every day. I'm back to walking which is tougher than I thought, but I'm getting there. My legs just don't seem to work together the way they used to. I walk like a beat up old football player, but I'm hoping that with more walking things go back to normal. If I ever want to run again like I used to, that is going to have to get fixed. On another note, I seem to be past the Gastroenteritis which is really a fancy word for the stomach flu. No idea where I picked it up. It could have come from someone close to me who had it or possibly from something I ate. Doesn't really matter to be honest with you. I'm just happy to be past that nightmare. I don't wish that experience upon my worst enemy and I pray I will never have to go through that ever again.
My appetite remains strong and I've gained 12 pounds with more to come. All systems are go my friends and I can only hope I remain on this track. I'm feeling better but also have no illusions that things could turn for the worse at just about anytime. The good news for now is that people tell me I'm looking better and my doctors are telling me my recovery couldn't be going better. How much better could life be? Thanks Van, I couldn't have gotten here without you bro. I have a long way to go but things are looking good. Thanks for reading everyone and please take care of yourselves!
Tuesday, February 3, 2009
Day + 104
Saturday has come and gone and all I can say is the service for Van and following events were just perfect. It was a true reflection of the life he lived and the impact Van had on the people he touched. For those of you who couldn't attend the funeral service, let me try to paint a quick picture for you. The church, which was no small church, had a capacity of roughly 200 people sitting. In addition to those 200 seats, they added folding chairs, put seating up on the stage by the altar, opened up the choir seating and then allowed people to stand in any open spot they could find. The service started at 2:00pm and the church with all of the seating and standing room I just described was full at 1:45. While the church was at full capacity on the inside, there was a line of about 100 yards long on the outside of 3 people wide still waiting to get in. On the sidewalk leading up the church you could still see people filing in from wherever they parked which was probably miles away somewhere. I guess what I am trying to say is a lot of people showed up to pay their respects to Van. It was the ultimate testament to show how much of an impact Van had on the lives he touched. If you knew him for a day, a week, a month, a year or if you were luckily enough to have known him for many years, you were his friend…and his friends showed up. The service commenced with about 150 people standing outside the church by the open windows so they could hear what was being said. The party afterwards was quite a time and badly needed by all. I’d like to thank Cindy and the rest of Van’s family for having us there. Evey and I were so happy to be able to be a part of that so thank you very much.
On the medical side I hit a bit of a speed bump early Sunday morning. Unfortunately, speed bumps in my situation could turn out to be a very bad thing so it got kind of scary. I must have picked up something from food in the prior few days leading up to Sunday because what I experienced that morning I never want to go through again. I was awake at 2:00am Sunday morning with the worst abdominal pain I have ever felt and just could not get rid of it. As you could image, every thing that goes along with that came, but normally those things ease the pain. Not in this case. After writhing around in agony until about 7am, I woke up Evey and had her rush me to the ER…an hour away in San Diego. I just couldn’t take the pain anymore and I started to get scared. Well, as luck would have it, the ER was full of people. It must have been quite a sight for those poor people in the ER waiting room to see me sitting there in a wheelchair doubled over in agony begging for some sort of pain relief. Luckily I got pushed up in line due to my AML but it took a good hour to finally make the pain go away. I think the doctor had to administer 4 doses of pain killers to finally give me some relief which pretty much meant knocking me out. Then I woke up and the pain was still there, so he would hit me again and out I would go. That went on until about 5pm or so on Sunday when I finally got comfortable. They took x-rays, did a catscan, drew every kind of blood culture you could imagine and took the typical samples. We’re still waiting for some of the results but what really scared them was the fact that I spiked a fever. In the situation I am in you can’t risk anything when it comes to fevers, infections, etc so they instantly admitted me. I was feeling better at that point but I knew it was a good idea to stay the night there so I didn’t put up a fight. I just felt bad for Evey and my Dad for having to watch the Superbowl from the damn hospital. At least Evey got to have some more of that hospital food she loves so much. I just don’t get it, but I love it. We had a great Superbowl Sunday planned as well. Beers and Brats with family and friends over at my Uncle Hans’ house. Well that all came to a crashing halt. Sorry Evey and Dad, but thanks for being there with me. I woke up Monday morning feeling pretty good but obviously really weak as well. But I’ll tell you this, nothing was going to keep me in that hospital for another night. From the minute I woke up I was on the doctors and nurses about discharging me. They didn’t seem too high on it at first but as the day went on and I showed no signs of fever, things got easier and they kicked me out of there at about 6pm.
So there you have it…my day + 101 speed bump. I’m home now and things are getting back to normal, but it was a healthy reminder for me that I am in the thick of things with this battle. Yes, this was an extraordinary week with the stress of everything that happened, the number of people I came in contact with, the hand shakes, the tears, food, my body just completely worn down, whatever it may have been that caused this. It doesn’t really matter because when it comes to my immune system, something like this could come from anywhere. I don’t even want to imagine what would have happened if I were alone. Can you say ambulance ride? I’m not going to beat myself up over this for being careless because I do believe that based on this weeks circumstances this was unavoidable. But again, it’s a good healthy reminder that I still have a very long way to go before I can get out there like you lucky folks and not have to worry about this stuff. What a great day that will be when it comes, and it will come.
So as you can see it has been a hell of a week. I keep shaking my head saying how could things get any worse. Things have to turn around and start to get better sometime. But you can’t do that. This is life and all you can do is deal with it the best you can. No doubt this will go down in my history as one of the worst weeks of my life, and I can already look back and say I could have handled things differently, but no sense in that. My mindset right now is simply, this is life, deal with it as best you can, be optimistic that things WILL get better and learn from the things you could have done differently. Easier said than done would be the best thing I could say to close out this message. Thanks for reading everyone and take care.
On the medical side I hit a bit of a speed bump early Sunday morning. Unfortunately, speed bumps in my situation could turn out to be a very bad thing so it got kind of scary. I must have picked up something from food in the prior few days leading up to Sunday because what I experienced that morning I never want to go through again. I was awake at 2:00am Sunday morning with the worst abdominal pain I have ever felt and just could not get rid of it. As you could image, every thing that goes along with that came, but normally those things ease the pain. Not in this case. After writhing around in agony until about 7am, I woke up Evey and had her rush me to the ER…an hour away in San Diego. I just couldn’t take the pain anymore and I started to get scared. Well, as luck would have it, the ER was full of people. It must have been quite a sight for those poor people in the ER waiting room to see me sitting there in a wheelchair doubled over in agony begging for some sort of pain relief. Luckily I got pushed up in line due to my AML but it took a good hour to finally make the pain go away. I think the doctor had to administer 4 doses of pain killers to finally give me some relief which pretty much meant knocking me out. Then I woke up and the pain was still there, so he would hit me again and out I would go. That went on until about 5pm or so on Sunday when I finally got comfortable. They took x-rays, did a catscan, drew every kind of blood culture you could imagine and took the typical samples. We’re still waiting for some of the results but what really scared them was the fact that I spiked a fever. In the situation I am in you can’t risk anything when it comes to fevers, infections, etc so they instantly admitted me. I was feeling better at that point but I knew it was a good idea to stay the night there so I didn’t put up a fight. I just felt bad for Evey and my Dad for having to watch the Superbowl from the damn hospital. At least Evey got to have some more of that hospital food she loves so much. I just don’t get it, but I love it. We had a great Superbowl Sunday planned as well. Beers and Brats with family and friends over at my Uncle Hans’ house. Well that all came to a crashing halt. Sorry Evey and Dad, but thanks for being there with me. I woke up Monday morning feeling pretty good but obviously really weak as well. But I’ll tell you this, nothing was going to keep me in that hospital for another night. From the minute I woke up I was on the doctors and nurses about discharging me. They didn’t seem too high on it at first but as the day went on and I showed no signs of fever, things got easier and they kicked me out of there at about 6pm.
So there you have it…my day + 101 speed bump. I’m home now and things are getting back to normal, but it was a healthy reminder for me that I am in the thick of things with this battle. Yes, this was an extraordinary week with the stress of everything that happened, the number of people I came in contact with, the hand shakes, the tears, food, my body just completely worn down, whatever it may have been that caused this. It doesn’t really matter because when it comes to my immune system, something like this could come from anywhere. I don’t even want to imagine what would have happened if I were alone. Can you say ambulance ride? I’m not going to beat myself up over this for being careless because I do believe that based on this weeks circumstances this was unavoidable. But again, it’s a good healthy reminder that I still have a very long way to go before I can get out there like you lucky folks and not have to worry about this stuff. What a great day that will be when it comes, and it will come.
So as you can see it has been a hell of a week. I keep shaking my head saying how could things get any worse. Things have to turn around and start to get better sometime. But you can’t do that. This is life and all you can do is deal with it the best you can. No doubt this will go down in my history as one of the worst weeks of my life, and I can already look back and say I could have handled things differently, but no sense in that. My mindset right now is simply, this is life, deal with it as best you can, be optimistic that things WILL get better and learn from the things you could have done differently. Easier said than done would be the best thing I could say to close out this message. Thanks for reading everyone and take care.
Tuesday, January 27, 2009
Van Service Information
Thanks for being patient everyone. Please see below for all service information for Van. More information to follow as it comes to us but here is what we have as of now.
Please use GOOGLE MAPS and NOT Mapquest when getting directions. Mapquest directions are incorrect.
Funeral Services Info:
Saturday, January 31st at 2pm
Episcopal Church of the Blessed Sacrament
1314 N Angelina Drive
Placentia, CA 92870
714-528-2995
www.bsacramentchurch.org
Burial following the ceremony at Memory Garden Memorial Park and Mortuary
455 W Central Avenue
Brea, CA 92821
714-529-3961
www.memorygarden.com
Please use GOOGLE MAPS and NOT Mapquest when getting directions. Mapquest directions are incorrect.
Funeral Services Info:
Saturday, January 31st at 2pm
Episcopal Church of the Blessed Sacrament
1314 N Angelina Drive
Placentia, CA 92870
714-528-2995
www.bsacramentchurch.org
Burial following the ceremony at Memory Garden Memorial Park and Mortuary
455 W Central Avenue
Brea, CA 92821
714-529-3961
www.memorygarden.com
Monday, January 26, 2009
Van - Monday, January 26th, 2009
Heartbroken is the only word I can use for how I am feeling right now. Well that is the dominant one. Others would be confused, angry, dumfounded...so many more. Van, one of my best friends passed away on what looks like Saturday night. I don’t even know what to think right now. How could this 29 year old kid with so much life, happiness and energy be gone from our lives? Nothing makes sense right now except for the fact that Van is gone and we have to accept and deal with it. Do you know how difficult that is when you are talking about someone like Van? This was a 29 year old kid who all of us yesterday just kept looking at the door expecting him to walk through yelling, “Just kidding guys”. But obviously that never happened.
So the point of this message is twofold. One is because I just need to get my thoughts down somewhere. I can’t articulate anything verbally so I guess I’ll try this. The other purpose is to let you all know what we know because Van had great friends on both coasts and across the country and it’s only right that everyone knows what happened, as far as we know this morning. What I can tell you as of now is that Van passed away peacefully on Saturday night in his home. It will be up to his family and Staci to decide how much information they want to release beyond that, but I think it’s important for everyone to know that he did pass quickly, peacefully and with no pain.
Personally, I am wrecked. I just don’t know what to do. Everyone reading this blog knows what I have been battling with for the past 8 months, but what they don’t know is the role Van had played in my recovery. Without hesitation or question I can say that Van was there EVERY time I needed him and he put me and my well being ahead of himself. That includes weekdays, weekends, mornings, afternoons, nights, didn’t matter. If he was in town and I needed anything, Van was there with a smile on his face not even questioning why he was there, just happy to be there. He was team captain for the Light the Night Walk event in which we raised close to $15k and that was all his doing. If he was out of town, it hurt him that he wasn’t there for me. That is the kind of person Van was to me personally. I will never forget his spirit, his desire to help and most of all his absolute heart of gold. I know there are stories like this with just about everyone who was fortunate enough to have Van touch their lives, this is mine. There is so much I am going to miss about him it’s not even worth listing, but that list is going to grow every day that guy isn’t in my life and it kills me to even think about it. I lost a brother on Saturday night along with a lot of other people and we’re going to have to find a way to get through this, no matter how impossible or hard it might seem. One thing I know is that Van wouldn’t want us wallowing around in our own self pity. Sorry Van, this one is going to hurt for a while so I can’t make you any promises, but I’ll try.
We’ll figure out the best way to get more information out about services, etc. I’m not sure if this is the best avenue for that or not, but feel free to check back here until we do get it figured out. Again, this will be up to Van’s family and Staci.
Van, from the bottom of my heart and everyone you touched, we will miss you my friend, very much.
The family has asked in lieu of flowers, Van would want all donations in his name to go to the Leukemia and Lymphoma Society. This is something Van started upon my diagnosis and his family feels he would like to see his work continued:
Donate by email: http://www.leukemia-lymphoma.org Look for "How to help" section on left side of screen towards the middle/then click on "Donate"/click on "online donations" (first bullet middle of screen)/fill out form- designate your donation "in memory of":
Van Skoglund
5973 Calle Cuervo
Yorba Linda, CA 92887
OR
Donate by Phone - Call (800) 955-4572
If the donation is in memory or honor of a loved one and you would like an acknowledgement card sent to a family member informing them of your donation, please provide Van’s full name and address (above).
So the point of this message is twofold. One is because I just need to get my thoughts down somewhere. I can’t articulate anything verbally so I guess I’ll try this. The other purpose is to let you all know what we know because Van had great friends on both coasts and across the country and it’s only right that everyone knows what happened, as far as we know this morning. What I can tell you as of now is that Van passed away peacefully on Saturday night in his home. It will be up to his family and Staci to decide how much information they want to release beyond that, but I think it’s important for everyone to know that he did pass quickly, peacefully and with no pain.
Personally, I am wrecked. I just don’t know what to do. Everyone reading this blog knows what I have been battling with for the past 8 months, but what they don’t know is the role Van had played in my recovery. Without hesitation or question I can say that Van was there EVERY time I needed him and he put me and my well being ahead of himself. That includes weekdays, weekends, mornings, afternoons, nights, didn’t matter. If he was in town and I needed anything, Van was there with a smile on his face not even questioning why he was there, just happy to be there. He was team captain for the Light the Night Walk event in which we raised close to $15k and that was all his doing. If he was out of town, it hurt him that he wasn’t there for me. That is the kind of person Van was to me personally. I will never forget his spirit, his desire to help and most of all his absolute heart of gold. I know there are stories like this with just about everyone who was fortunate enough to have Van touch their lives, this is mine. There is so much I am going to miss about him it’s not even worth listing, but that list is going to grow every day that guy isn’t in my life and it kills me to even think about it. I lost a brother on Saturday night along with a lot of other people and we’re going to have to find a way to get through this, no matter how impossible or hard it might seem. One thing I know is that Van wouldn’t want us wallowing around in our own self pity. Sorry Van, this one is going to hurt for a while so I can’t make you any promises, but I’ll try.
We’ll figure out the best way to get more information out about services, etc. I’m not sure if this is the best avenue for that or not, but feel free to check back here until we do get it figured out. Again, this will be up to Van’s family and Staci.
Van, from the bottom of my heart and everyone you touched, we will miss you my friend, very much.
The family has asked in lieu of flowers, Van would want all donations in his name to go to the Leukemia and Lymphoma Society. This is something Van started upon my diagnosis and his family feels he would like to see his work continued:
Donate by email: http://www.leukemia-lymphoma.org Look for "How to help" section on left side of screen towards the middle/then click on "Donate"/click on "online donations" (first bullet middle of screen)/fill out form- designate your donation "in memory of":
Van Skoglund
5973 Calle Cuervo
Yorba Linda, CA 92887
OR
Donate by Phone - Call (800) 955-4572
If the donation is in memory or honor of a loved one and you would like an acknowledgement card sent to a family member informing them of your donation, please provide Van’s full name and address (above).
Friday, January 16, 2009
Day + 86
The proverbial light at the end of the tunnel has arrived and my appetite is back. I can’t tell you how good it feels to be hungry again. How it feels to enjoy the food you are eating rather than trying your hardest just to keep it down. How nice it is to look forward to eating rather than dreading your next meal. It is so difficult to put into words how terrible this appetite thing is unless you have lived it or seen in first hand with someone you love or care for. And it’s amazing how this one issue just completely ruined me. Now that my appetite is back I feel like a new man. I am slowly putting weight back on but more than that, I’m just starting to feel like myself again which is something I have missed for quite some time. I’m sure anyone close to me can verify that. I feel like talking to people again, going out for walks, catching up on idol work that has been sitting around because of my total lack of motivation, etc. It just amazes me that all of those things are related to the fact that my appetite and just overall eating habits were so out of whack, and now it’s back and I feel like a new man.
On the medical side of things all is well. My blood counts continue to hover exactly where they should be, to the point that my doctor has now lowered my required hospital visits to one day per week as opposed to twice a week. If you remember I started out with going to the hospital three times per week, so this means things are on track on the medical side and progressing according to plan.
So that’s about it. Things are going very well and I feel great which is great news for Evey who now gets to take a break from trying to get food down my throat on a daily basis. Poor girl, but at least it’s over for now. It’s so funny how things can turn on a dime so quickly. I remember about 3 weeks ago I was meeting with my doctor and told him with no joke in my voice that I truly felt like I was falling apart. I had no appetite and was losing weight, my feet absolutely killed me due to a condition caused by chemotherapy where the nerve endings in my feet get all messed up, I had zero motivation to do anything and my personality just seemed like it was turning dark. This was 3 weeks ago. He looked at me, we addressed each “issue” I was experiencing and he told me “One morning you are going to wake up and you will just feel good. There is no explanation around it except that it will happen”. At the time that meant nothing to me given the state I was in. At that point in time I seriously had forgotten what it felt like to feel good, or even average. It’s a terrible feeling when you can’t even remember what it’s like to feel average. Well, I’m happy to say that I am there and that morning has arrived and what a great morning every morning is when you feel like this. Whether it’s short lived or this is my road going forward, I don’t care. I am living up these good times and loving the fact that I feel like Kurt again. Take care everyone and we’ll talk again soon. Look for me at the Laker game tonight. I’ll be the one in purple and gold.
On the medical side of things all is well. My blood counts continue to hover exactly where they should be, to the point that my doctor has now lowered my required hospital visits to one day per week as opposed to twice a week. If you remember I started out with going to the hospital three times per week, so this means things are on track on the medical side and progressing according to plan.
So that’s about it. Things are going very well and I feel great which is great news for Evey who now gets to take a break from trying to get food down my throat on a daily basis. Poor girl, but at least it’s over for now. It’s so funny how things can turn on a dime so quickly. I remember about 3 weeks ago I was meeting with my doctor and told him with no joke in my voice that I truly felt like I was falling apart. I had no appetite and was losing weight, my feet absolutely killed me due to a condition caused by chemotherapy where the nerve endings in my feet get all messed up, I had zero motivation to do anything and my personality just seemed like it was turning dark. This was 3 weeks ago. He looked at me, we addressed each “issue” I was experiencing and he told me “One morning you are going to wake up and you will just feel good. There is no explanation around it except that it will happen”. At the time that meant nothing to me given the state I was in. At that point in time I seriously had forgotten what it felt like to feel good, or even average. It’s a terrible feeling when you can’t even remember what it’s like to feel average. Well, I’m happy to say that I am there and that morning has arrived and what a great morning every morning is when you feel like this. Whether it’s short lived or this is my road going forward, I don’t care. I am living up these good times and loving the fact that I feel like Kurt again. Take care everyone and we’ll talk again soon. Look for me at the Laker game tonight. I’ll be the one in purple and gold.
Friday, January 9, 2009
Day + 79
Here we are at day 79 since my transplant and at times it feels like yesterday. Sometimes that's a good thing and other times it's not so good. I had this vision in my head that my recovery would be completely linear and as time progressed, so would my recovery. Things couldn't be further from reality. What I have found is that my road to recovery has left turns, right turns, sometimes u-turns, hills, valleys...the whole deal. These turns, hills and valleys manifest themselves in random pains, nausea, complete loss of appetite, weight fluctuation; the list could go on and on. My point to all this, is now that I know my recovery isn't going to follow a straight line, time does not necessarily equal get better; I think I'll be better equipped to handle this stuff in 2009. At least that's what I'm going with.
My counts are all looking good as usual and in fact, I may even be able to start pulling back on some of the key anti-rejection medications. If that turns into a trend and we continue to pull back on more of these meds that would be huge. One thing I really want to get away from is all of these medications and this could hopefully be a start to that.
Some more good news which is actually pretty funny to me is my hair is starting to grow back. But it's like fuzzy little baby hair. Evey and I are getting a kick out of it. I can joke about it all I want, but in reality it feels pretty damn good. It is visual proof that my body is moving on and recovering from the poison of the chemo and radiation. As I said in my last message or a couple of messages back, the small victories are what count and the fact that this one is tangible makes it even better.
Now I just need to get my weight up. I'm not sure if any of you have experienced what it feels like to not have any appetite, ever. It is miserable, especially when you NEED to get your weight up for obvious health reasons. Right now I am about 25 pounds underweight, and any kind of food at any given time of the day just sounds terrible. What do you do when just the thought of food makes you sick? Well, the first thing you do is force down what you have to, at least to maintain your weight. The last thing you want to do is to lose more weight. Let me tell you first hand that this is torture, especially coming from someone who loves food. It’s like a terrible curse. Anyway, I spoke with my doctor about it and he gave me some liquid medication to help with my appetite. I've been on it now for the past 4 days and that with Evey's non-stop cooking and putting food in front of me, it seems to be working. I've gained 3 pounds back this last week and feel like I can keep more food down than before so I feel like I'm on the right track.
That's about it for now. As you can see I'm still in the thick of the fight and the last month or so has been a huge challenge both mentally and physically, but progress is being made. Thanks for sticking with me…
My counts are all looking good as usual and in fact, I may even be able to start pulling back on some of the key anti-rejection medications. If that turns into a trend and we continue to pull back on more of these meds that would be huge. One thing I really want to get away from is all of these medications and this could hopefully be a start to that.
Some more good news which is actually pretty funny to me is my hair is starting to grow back. But it's like fuzzy little baby hair. Evey and I are getting a kick out of it. I can joke about it all I want, but in reality it feels pretty damn good. It is visual proof that my body is moving on and recovering from the poison of the chemo and radiation. As I said in my last message or a couple of messages back, the small victories are what count and the fact that this one is tangible makes it even better.
Now I just need to get my weight up. I'm not sure if any of you have experienced what it feels like to not have any appetite, ever. It is miserable, especially when you NEED to get your weight up for obvious health reasons. Right now I am about 25 pounds underweight, and any kind of food at any given time of the day just sounds terrible. What do you do when just the thought of food makes you sick? Well, the first thing you do is force down what you have to, at least to maintain your weight. The last thing you want to do is to lose more weight. Let me tell you first hand that this is torture, especially coming from someone who loves food. It’s like a terrible curse. Anyway, I spoke with my doctor about it and he gave me some liquid medication to help with my appetite. I've been on it now for the past 4 days and that with Evey's non-stop cooking and putting food in front of me, it seems to be working. I've gained 3 pounds back this last week and feel like I can keep more food down than before so I feel like I'm on the right track.
That's about it for now. As you can see I'm still in the thick of the fight and the last month or so has been a huge challenge both mentally and physically, but progress is being made. Thanks for sticking with me…
Thursday, January 1, 2009
Day + 71
Hi everyone,
I am going to keep this message short and sweet and just say HAPPY NEW YEAR and thank you. Each and every one of you holds a special place in my heart. I want to thank you for your messages of encouragement over the last week specifically…you know who you are. It has been quite a year and all I (we) can do is wave good-bye to the past and look forward to a great 2009.
So again, HAPPY NEW YEAR my friends and spread the good word that this good forsaken year is over and it's time to start a new one. Thanks for reading and we'll catch up again soon. -Kurt
I am going to keep this message short and sweet and just say HAPPY NEW YEAR and thank you. Each and every one of you holds a special place in my heart. I want to thank you for your messages of encouragement over the last week specifically…you know who you are. It has been quite a year and all I (we) can do is wave good-bye to the past and look forward to a great 2009.
So again, HAPPY NEW YEAR my friends and spread the good word that this good forsaken year is over and it's time to start a new one. Thanks for reading and we'll catch up again soon. -Kurt
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