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’…

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…

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.