Get something to drink, this is a long one. :)

Hello everyone. Hope you are all doing well and having an event-free January. My goal is to try and do an update weekly, so I guess that means I am a day or two late with this post. Casey and I went on a walk today, had a very nice lunch and she asked about me writing something in the blog. Casey did not say one unkind word to me about not writing something since Jan 12th (as she loves me and knows my deficiency in this area of communication), but I kind of started feeling like I was dropping the ball a bit. As some of you may know about me, I am not someone who would ever have a computer or internet 'problem,' as I often go a number of days without getting on to the computer (other than to check email). I know I am an aberration and most people probably don't relate to this, but I am extrememly 'unconnected' technology wise. Well, maybe my 90 year old neighbor across the street is less connected, but pointing that out really doesn't make me look any better. I have a cell phone and do email, but that's about where it ends for me. I have tried to investigate within myself lately why I have this aversion to being 'connected' and involved in the various social networking sites and situations. No good answer came to me. I'm not sure what my deal is, but I can assure you I will continue to explore deep within myself to answer this question. Until then, I am commited to writing a weekly blog update! If nothing else, as I've said before, it would be nice to have a record of this journey to reflect back on when heads are clearer, kids are older and time has passed to a point where the details risk becoming lost within the vast filing system of ones brain.

First, I want to mention that I am so appreciative of the support and interest from all of our family and friends. Everyone who has taken and interest in this adventure has truly uplifted me on every emotional and physical level possible. It feels so good knowing that there are all these people out there who not only care about how your doing, but also take the time to read about the highs and lows of the process. We all have demands on our time and each day's free time is limited, so thank you for caring about my family enough to check-in and see how we're doing. It really means a lot to us knowing you're out there!

Casey and the boys went to Los Angeles for the weekend. They had fun at the zoo, the aquarium, the Santa Monica pier and the La Brea Tar Pits. But, unfortunately, they couldn't escape the rain. Sounds like they had a nice day and a half, then the first of three storms came through on Monday. It sounds like they would have been better off renting a boat, as getting back to the airport yesterday was quite a challenge with all the water on the roads. Luckily, they made it back safely and I think they're happy to be home in sunny Seattle.

As far as a clinical update goes, I'm doing very well. The central line IV catheter in my chest was removed last Thursday. I have been healthy with no fevers. I feel good and actually yesterday was "released" from my team at the SCCA (Seattle Cancer Care Alliance). They said that I am a model patient in how well I've done, but in the same breath reminded me of the many pitfalls that I need to be aware of in the next few months. They break things down into 3, 6, and 12 month time periods. They are very clear that I won't have a fully functioning immune system until at least 12 months, and maybe longer. But, each month, I will be better protected than the previous one. So, it has been made very clear to me that I "must not get complacent" and "fall off the horse" with regards to following the rules and observing the restrictions that are in place to "protect" me. I think I got 'The Talk' because I started mentioning that I wanted to do some landscaping work on our planting strip in the front yard and I wanted to tear out our old fireplace and build a new one with some cool fluted molding and tile. I don't want any setbacks at this point, so I am going to follow the rules. After the patience and love of my wife, kids and mother (and many other people), I would feel aweful if I wasn't doing my part and ended up back in the hospital - away from them again.

I do get a bit tired sometimes, but am able to walk and do any activities I want throughout the day. I notice I'm not needing as many breaks like I did two weeks ago. I walked around Green Lake today with Casey, had lunch and bought her some new running shoes. I'm very excited she got new running shoes, as we figured out that I bought her current ones for her in either 1990 or 1991...yikes. Although walking and doing pretty much anything I want is fine, I have to say that my leg muscles really suck. I thought most of the muscles loss was due to inactivity and prednisone (last day to take it is tomorrow!), but they mentioned at my discharge appt yesterday that the chemo destroys many of those cells too and at some point I was probably burning some muscle for energy. So, sounds like there are a number of reasons for the muscle loss. It's crazy how you can lose the muscle so quickly, but it'll probably take a year or more to build it back.

I will now transition to an oncologist for weekly visits that will eventually become every other week visits. He will be keeping a close eye on my blood counts and screening for virus' (specifically EBV, CMV and JC virus - all of these would require prompt attention and treatment). I will continue on anti fungals, virals and bacterials for most of this year. I need to obviously not be exposed to people who are sick, the flu, and hope not to get some other common kid virus', like RSV. My blood counts are doing well. They always fluctuate a bit each week, so it's something you just have to get used to, as one week they're up and the next they're lower. The biggie that will take the longest for me will be the lymphocytes (these are the T-cells and B-cells). Most people come out of a transplant with some of these types of cells, but I was left with none of these. I was given an extra medication (called anti-Thymoglobulin or ATG) to make sure I was 'T-cell depleted' and then only given back the basic and earliest of stem cells (this is called CD34 selection), so that I would not have any of my old T-cells. This is because in MS, the T-cells are what are attacking the myelin sheath around the nerves, so they don't want you to get your old ones back. But, this means that I will be 3 to 6 months behind a normal patient on grafting my lymphocytes back to a normal level. The oncologist's job is to make sure my counts are progressing nicely and headed in the right direction. So far, so good.

I am very grateful to have done so well and be sent on my way by the Gold Team staff at the SCCA. Once they release you from your 'team,' there is no going back. All care from here will be handled by the oncologist and my family physician. It feels kind of funny to have the SCCA security blanket taken away. I knew when my transplant nurse, Anne, gave me a big hug and my transplant doctor shook my hand before leaving the conference room yesterday, that my days of them watching over me so carefully were over. I'd only be seeing them if I visited to say hi or ran into them at REI or something. I will always be grateful of how wonderful the Gold Team personnel were. They take such good care of you and watch over you so closely as you go through this very risky, yet rewarding, process of having a stem cell transplant.

Boy, I'm going on and on here...sorry. But, two more quick things. I am hoping to get back home to Wallingford by the end other month (yep, like in the next 10 days or so). We're making plans now with the kids, some new routines, and stuff to get things in order. I'm really looking forward to getting kids up in the morning, making them breakfast, getting them to school, and making dinners. Kind of funny how things that once seemed mundane, now look like exciting and fun activities to look forward to each day. I can't wait!

Finally, I want to publicly thank my mom. She is amazing! So strong, so generous and so smart. I was concerned about being a burden staying at her house for so long and really didn't know if it would get annoying for her to have me pushing the pause button on her usually busy life. But, not one moment has she made me feel anything but loved and welcomed. In fact, we talked the other night about how this is actually kind of a gift. How many mothers get to have their 42 year old son come home and hang out for a month. We've had breakfasts and dinners together. Sit and read that paper in the morning. Go to a matinee movie on a Tuesday. We've been able to talk about life, family, goals, politics, and so many other things. It's truly been a blessing to be able to spend this time together. So, thanks mom and I love you very much! Oh, and also, Happy Birthday tomorrow.

Thanks again to everyone. Talk to you all next week. Mike