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.
Wednesday, April 22, 2009
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.
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