Day + 69

Hello everyone, from a foggy afternoon in San Diego. I wish I could tell you that the last few weeks since my last message have been pleasant, but they have been anything but. I have been battling nausea, back pains, heavy fatigue and the latest newcomer to the party, low equilibrium.

As you could imagine, the last few weeks have been pretty rough for me. My days have been pretty simple. Eat four to six meals a day, walk once and a day, go to the doctor if required and if not then try to squeeze in a movie or something. But now when you introduce the level of nausea I had, the appetite I lost, the back pain that came from it…you don’t even want to get off the couch. You don’t want to eat. You don’t want to talk on the phone. You don’t want to text, email, talk or communicate with anyone in any way shape or form. It really is like living in your own private hell. Due to all of this my doctors put me through some pretty invasive tests that involved tubes going in parts of your body where naturally they just don’t belong. The worst part about that whole experience is that I woke up half way through it and start pulling the tubes out of my mouth. Then I would fall asleep again 5 seconds later, then 5 minutes later I would wake up again and do the whole thing again. Luckily it only happened when the tubes were in my throat and the biopsy’s all came back negative so it all turned out good.

Even in all of that pain, I was still able to find some pockets of fun. The best being able to attend the Laker game on Christmas day when they beat the hell out of the Celtics. It is by far the best professional basketball game I have ever been to. The energy alone charged my battery for a solid three or four days not to mention the fact the Lakers ended the Celtics winnings streak. I am going to stop with sports there because it is going to take me a good 6 – 7 months to get over Sunday’s event’s. Ok, so enough of the pain and misery I have been suffering through over the last few weeks. All I can say is I am happy I am able to find an hour of “sunshine” to write this.

So on the health side, there is some good news. I did learn that my body has completely engrafted to my donor’s bone marrow. This is what the doctors have wanted to see since the test went out six weeks ago or so. It means that the likelihood of complications that should arise from the transplant should be cut down to minimum now because of this. My counts are also still doing very well and continue to impress the doctors. Some of the issues I was having during the last few weeks led my doctor to send me to see a neurologist. He seems to think my headaches are deeper rooted that just surface pain. I disagree but we’ll see. This means I have to go in for an MRI in a few weeks, but I’ll be sure to report the finding of that back to you as I get the results.

That’s about all I have for now. My victories are being measured in very small doses lately. If I sleep through the night without being restless, that is a victory. If I wake up in the morning and can make to the kitchen and make a bowl of cereal without my back killing me, that’s a victory. If I don’t pick up a head ache inside of 15 minutes of waking up, that’s a victory. If I can make my girlfriend smile at any point of the day for any reason what so ever, that’s a victory. There are a million others, but I’ll take that last one of the rest any day. She has done so much for me over the past month especially, she is just unbelievable.

Day + 50 Eve

Happy day + 50 Eve everyone. Man, just about at the 50 day mark. That is pretty sweet I must say. I just read through some of the postings on the blog and I must say they still continue to make me smile. I am a pretty lucky guy to have all of you in my corner, and I know there are even more of you that don’t write. It’s funny, I can’t tell you how many times I run into people I don’t even know who read the blog on a regular basis. It’s a trip. My thanks go out to you as well. You guys are all awesome and I appreciate every word you say and write so please keep it up.

I have some pretty cool stuff to share with all of you tonight. At my hospital appointment on Monday, my doctor came to me with a letter from my donor. I seriously had it in my hand for 5 minutes before I finally started to read it. I don’t know why either. I guess I was a little afraid, unsure, nervous… about what I was about to read. Instead of picking out the highlights, I’ll just share the whole letter verbatim with you:

Sweden Oct 21st, 2008

Hi,

I’m a 44 years old man from Sweden. I’ve been a donor for bone marrow for about 15 years, but I haven’t donored before. When I was tested this time and was told it matched you, I didn’t hesitate a second to do the donor.

I’m sure you’ll do fine and wish you the best of luck during the process. If it’s ok with you, it would be nice to hear from you in the future.

We could exchange email addresses or so through our hospitals.

Good luck from Sweden.

I’m not embarrassed to say I cried when I read this, and still continue to well up every time I read it or even talk about it. This is the most powerful, impactful, moving letter that has ever been written to me and I wish I could put into words what it means to me, but I can’t. Everything would be understating by a mile how it has affected me. All I can say is I truly feel as though I have an angel on my shoulder, and that angel lives in Sweden. What am I going to write back to him? I have no idea. I mean where the heck do I start? Thanks for the new life. Thanks for the sacrifice. I really have no idea, but he will be getting a letter ASAP. And the kicker to the whole experience…the date he wrote the letter, Oct 21st, is my birthday, and there is no way he knew that due to donor privacy laws. If that isn’t amazing I don’t know what is.

As far as the results of the latest bone marrow test go, I’m still waiting for the results that show how much of my immune system belongs to me and my donor. Now they are saying I should have those results back by the end of next week. Either way, I’ll report back to you as soon as I have them. All blood counts continue to be exactly where they should be. WBC is at 4.9, HCT is at 31.8 with Platelets coming in at 147,000. With all of that said, I did have an absolutely horrible night on Monday night. Probably the worst night I’ve had in months and rivals some of the worst I’ve had during my chemo battles. Luckily it was very short lived and I was back at it about 24 hours later. It was a very painful reminder that this fight is far from over and I still have a long way to go. Regardless, I made it through Wednesday and I’ll make it through whatever else is thrown at me.

Take care guys and thanks for reading. We’ll catch up again soon.

Day + 41

Hi everyone. I hope you all had a happy Thanksgiving. I know I did and it definitely had a different meaning this year given everything that has happened. It has always been my favorite day of the year for the simple reason that you can eat great food, drink, nap and watch football all day. And of course the Cowboy game just makes the day that much better. But before this year, I could never really answer the old, "What are you thankful for?" question. I don't mean to sound like I've taken my whole life for granted, because I haven't. I'm always thankful for the place I live and for the family and friends I have. It's very easy just to shrug that question off and say yeah, life is good and I'm grateful for it. But now, everything gets put into a different perspective and I find myself deeply thankful for everything, on a far different level then before. I could very easily be dead if not for the actions and support of many people around me. That is a very odd feeling to get your arms around. All day long I found myself drifting into weird reflections of the first hospital when I was sick but didn't know what was wrong yet, then going back to the conversation with my doctor where she told me off my diagnosis, then to my battles with the chemo and later the radiation, then thinking of the non-stop support from my family, old and new friends, doctors and nurses. The visits, the thoughtful cards, books and gifts to help me take my mind off of the reality and of the situation. All of those things were going in and out my head all day long. And it's funny, I think the only reason it was all hitting me all at once is because it was Thanksgiving. I guess that's the whole point of the day. And please don't think that all of these thoughts made it a bad day for me, because it didn't. It really did quite the opposite and made it not only a great and happy day, but a special day...and the Cowboys beating the hell out of the Seahawks keeping them in the playoff hunt didn't hurt either.

Ok, enough of that babble. Let me update you on how things are going with my recovery. So far, everything remains on track and the doctors are still very happy with everything they are seeing. My blood counts are still hovering right in the range they should be and I have been feeling great. Things have just gotten better and better for me since that first really bad week of me getting discharged from the hospital. My nausea is gone for the most part and food has been tasting really good. Because of that, my weight has been going up as well. I have gained about 7 pounds since I’ve been out and that will continue to go up for another 15 pounds or so. That should get me to my target healthy weight. I’m still walking just about every day and while I’ve been in Orange County I have been able to walk with Floyd which has been really nice.

On the cancer side, all is good as well. Every 30 days since the transplant, I will be getting a bone marrow biopsy done to determine 2 things. 1, are there any cancer cells in my body. 2, how much of my immune system is mine and how much is my donors? I got the results from the first part yesterday. My body, blood and bone marrow as of now is completely cancer free and has been since I entered remission. They were even able to do a deeper dive into some of the trouble areas where the cancer was more prevalent and grouped together. In those areas as well, they saw no signs of cancer. As you can imagine, it is a pretty stressful time between the test and the results, but to hear those words that you’re still in remission is pretty unbelievable. I won’t get the results of the second part until late this week or next week, but what I’m looking for is 100% of my immune system to be that of my donor. That means that it would have fully taken over my body and pushed out my own faulty immune system. We’ll see what the results show.

For now, I’ll continue to take my 35 pills per day, walk as much as I can and eat as healthy as possible. Seems to be working so far. The only downside of this week is that my girl is in NY until Sunday. That's alright, she'll be back soon and all will be right. That’s it for now. Take care everyone and thanks for reading.