Nine months out from transplant.

Man, I almost forgot how to get onto my blog and post something. I had to try about three different steps before getting in to write an entry. Let that be a lesson to myself.

Anyway, I'll get right into the update so I don't write your eyes off (you know, like 'talk your ear off'). The family update includes a great summer! Awesome to have ALL four of us home - since Casey's out of school for the summer. A few car driving trips and some hikes, but no planes yet for me. And, still tried to avoid crowded places. We love Intiman Theater and the 5th Ave Theater, so when we go to Intiman we try and get a seat in the back row and at the 5th Ave, we're in the front row, so hopefully we're good there. I can't remove all the culture from my life, so I'll just be anti-social at those events and not talk to anyone. I wait all year to go to these plays and musicals and I will not be denied! On the whole though, still trying to be careful with my 'exposures' and will increase that vigilance when flu season starts this fall. I actually haven't even asked yet if I'm able to get a flu shot? I saw they were out already, so I better ask.

Owen has started kindergarten, so now both kids are in school all day. Owen loves it! They are both so cute doing their homework at night. Owen enjoys doing what big bro has done for the last few years. I'm supposed to pretty much stay out of the halls and classrooms this fall, but am trying to stay in touch by being the email Room Rep for Jack's class. Both are playing soccer and are looking forward to some other after school activities (Jack will be taking a Forensics class, how cool is that). Casey is working full-time teaching 3rd grade until just after Thanksgiving. Her teaching partner has a cute-as-a-button little girl she will be home with until then. After the holiday, they'll be sharing the class. The kids are very lucky - how many kids get to have TWO great teachers!

OK, now for the 'clinical part.' Having appts with the oncologist every three months now, so don't have one until sometime in Oct. Blood counts are, not surprisingly, still down. This may be the way it is for 1 to 2 years. And, in reality, who knows if I will ever be back to super-high counts considering my B-cells were a bit low before I even went in for the transplant procedure. So far, platelets and red cells are good, it's just the white blood cells that lag - unfortunately, those are the 'troops.' Maybe I should just consider myself like Iraq; not quite fully protected at this time due to troop withdrawl (as in WBC count depletion). I did have a pretty good cough/cold/fever in late July. I had a couple of those earlier this year, but this time I needed some antibiotics to kick it. It was kind of weird because usually when I get sick, especially fevers, I feel my MS symptoms worsening for a few weeks. But, this time, they didn't get worse? I'm not complaining or anything, but for the past couple of years, I just dreaded getting a cold, since it usually meant more 'issues' and discomfort. Maybe a good sign??

In general, my MS symptoms haven't changed. I guess I consider that good. They are about the same and as long as I don't notice them getting worse, I'm good with that. Still just have varying degrees of achey legs and some off/on spasticity. The tingling/pin prick feelings in my arms still comes and goes, along with the numb areas. And then, the fatigue is usually mild and unpredictable. I still don't get how I can have a numb patch or some tingling at a spot on my arm, and then in an hour, it's either gone or somewhere else. It's also weird, because I can ride a bike and feel great, but then do nothing and feel pretty floppy. Hmmm...maybe this means that I just need to keep my butt moving.

As far as the upcoming plan goes, I will have the Oct visit to check-in, have labs, etc. Then, I will have an end of the year (1 Year Appointment) visit to the Seattle Cancer Care Alliance. At this, I know there is a ton of labs, MRI, and general 'how you doin' evaluation and then setting me up for my immunizations. I'm still a bit unclear on the re-immunization thing. I have heard that you won't receive protection (aka: Sero-conversion) if you get immunizations with your CD4 (a type of WBC) count below 200. My last count (in June) was, I think, 78. Well, not sure what it means if I'm still well under 200. On the other hand, I've heard that you just get the immunizations starting around 12 months and that's it. So, still have to sort this one out, but I suppose they'll tell me. I'm kind of in the mode of, "Tell me what I need to do next when it's time to do it."

My one year anniversary of receiving my stem cells back will be Sat, Dec 18th. This is usually a big date for people who have had a SST. Casey and I wanted to have a get-together at the Wedgewood Alehouse (they have a cool back room), but I'm going to have to check with the powers that be (aka: Doctors) on this. I did do part of the Bike MS Ride last weekend and I don't think they thought I would do that, so maybe this will be ok'd when I plead my case. I'll keep you posted. I know it's in the middle of the holiday season, but stay tuned and if it has to be postponed, just think, you'll have a great party to look forward to in January. And, you all know what I think of the dark and dreary month of Jan. Let's just say, I would love to have something to look forward to.

My best to all of you. Casey, Jack, and Owen send a big hug and many kisses to everyone who has done so much for us this past year. This crazy ride continues and I'll keep you all posted. But, everything is really going well for me (and us) and I don't expect that to change. Talk to you all later. I'll check in with a short post to update you on my blood count numbers in October - since I know you're dying to find out too :)

Thanks, Mike