Stem Cell Transplant ---- the 6-month 'milestone'

Hello to Everyone;

First of all, I hope everyone is doing well out there. I have seen and talked to so many of you that I haven't written anything for a few months - I know, excuses, excuses. But, I figured, at least for posterity's sake, I should get something down on the blog to commemorate the 6-month mark since my stem-cell transplant in December 2009. When I penciled out the "magical" 6-month date out in my head, I thought, "Cool, it'll be summer." Unfortunately, when I was thinking about this in December, I forgot to factor in that I live in Seattle, and summer doesn't actually start until after the 4th of July. How true that is this year! My 6-month mark was on June 18th. This is calculated from the fact that my 'CD34 selected stem-cells' were given back to me on Dec 18th, 2009. I don't know if it's really the "magical" thing that I mentioned earlier, but it feels like a pretty big 'milestone.' You know, like, cool, I probably have survived most of the early issues that can arise (rarely) after an autologous, T-cell depleted, CD34-selected stem-cell transplant.

Anyway, how about if I just give a clinical update and maybe mention our plans for the year and some of the restrictions that are still in place through the rest of the year. When I think about the restrictions and what a pain in the butt they are, I remind myself that I'm already into July!

With the HALT-MS Study there are a number of clinical tests/evaluations that take place at 6-months, 1 year, 2 years, etc. (up to 5 years). I did all of these on June 15th, then had a visit with my neurologist (Dr. Bowen - awesome guy!) on Thursday the 17th. They have you do a walking test, a neuro exam, questionnaires, a 'peg' test to see how the old hands are working, a math test to test how the old brain is working, tons of blood is drawn (somewhere around 26 tubes), and a brain MRI. This all went fine. After having MS for a few years and doing the transplant, I can't imagine still having issues doing medical 'things.' If at this point, one found these types of things daunting or overwhelming at all, you're in for a long-haul.

The 6-month MRI was the thing that was most important to me and according to Dr. Bowen, it "looks unchanged and unremarkable." I know it's only 6 months, but I really didn't want to hear that there were any new lesions on the MRI - no thanks. So, I was very happy with that news and that was probably the most important thing to me. I'll continue to get brain MRIs at years 1 through 5 to check what I hope will be the 'lack of progress' - at least in the MS department.

I haven't seen exact blood counts lately, but I've had blood drawn every couple of weeks and I figure they'd call if there was anything that was overly concerning to them. I do know that my counts are low (white blood cell count is usually hovering around 3,000 - sometimes more and sometimes less) and that is expected. Because of the T-cell depletion I went through (aka: they kill ALL T-cells in your body and then you don't get ANY back in the graft), the full complement of white blood cells is going to take one to two years. My platelets are normal. My red blood cells are normal. The biggie I'm hoping for is that at 1 year my CD4 (a type of white blood cell) count is > 200. I need to have it over 200 to get my immunizations and booster shots. If you aren't at least 200, then you're unlikely to sero-convert and be protected from the diseases you're getting the shots for (i.e. measles, mumps, rubella, pertussis, diphtheria, tetanus, hepatitis, chicken pox, etc). In addition, it's very rare for a graft to 'not take.' If that were to happen, yikes, then I'd have bigger problems I guess - something I'll wait and worry about later if necessary.

I have been feeling pretty good. I have to remember a couple of things. First, this is the 'HALT' MS study, not the 'cure your MS and zap all your old lesions and repair any past damage' study. So, I still have the 9 brain lesions and 2 spinal cord lesions that I've had. At least as far as they know, they ain't going anywhere. Secondly, I will continue to have any symptoms/deficits that I had prior to the transplant. For example, the numbness/tingling in my arm and the leg weakness that comes and goes, may improve over the next 2 years (or so), but that damage is done. In addition, the lesions are also subject to issues when I get sick (like a sinus infection or cold virus). Even before the study, when I got a cold from one of the kids, I felt like crap. This is called a pseudo-exacerbation. They suck, because you really do feel like crap for about 5-6 weeks for every illness that you had (even if the bug only lasted for a week or so). You kind of get a less, but still very annoying, set of MS symptoms. This problem made Feb, Mar, and April a bit uncomfortable since I got a cold once in each of those three months. Although each virus only lasted about 5-7 days (like it would have been for anybody else), I pretty much felt crappy until late May. Now, since then, I've been healthy and have been feeling good - just back to my usual annoying aches, pains, and 'tingles.' I'm more than happy to live with these 'friends' the rest of my life if I truly am able to 'HALT' the MS and keep it from progressing.

I have to say, I'm so glad I did this study. As Casey and I talk about, the upside of 'halting' the MS is huge and if this type of treatment isn't the answer, well, that's life. And, really, how far set back am I? I'd just be in the same predicament I would have been in if I didn't do the study in the first place. The only difference is I would have had a bit of discomfort to go through to find this out. This is a gamble I would take any day, and do again in a second! Plus, I'm getting to spend some great, fun, and quality time with my kids.

So, as far as the rest of my year goes, I still have some pretty annoying, but very important, restrictions. The biggies are:

NO swimming (well, I can get in the water, but I can't submerge my head in a pool or lake r/t sinus').

NO digging in the soil (I water the plants in the yard, but NO gardening, planting, etc r/t aspergillus, a category of molds that are bad for lungs).

WATCH the sun exposure (I need to be careful and use sunscreen!).

NO home improvement projects (this one hurts!).

And, I still will be watching big crowds and sick people to make sure I'm not putting myself in a vulnerable position. That being said, Casey and I have enjoyed uncrowded pubs, restaurants, the theater (Intiman, 5th Ave, etc), movie theaters, and plenty of outdoor exercise and play at the park. It's nice that it's summer, so that the overall viral load is down with the kids, friends, and all the people I encounter out in public.

One sad thing for me is that my brother, Paul, is getting married this summer in Las Vegas. Unfortunately, I'm not going to be able to go. And, this really stinks, because not only is my brother's wedding important to me, but I love Vegas (and so does Casey). I just couldn't swing the crowds and risk I would find on the plane ride, the casino, and the clubs. In addition, I can't swim in the pool and sitting in the sun is a no-no. I need to be smart about what positions I put myself in and after talking with my doctors, this is one that I should probably avoid, as this whole process is all about long-term gain. I'm really going to miss being a part of Paul's big day, but I know he understands that August in Vegas 8 months after a stem-cell transplant is probably not a good idea for me.

We are going to do a couple of car trips to Winthrop, Wenatchee, and Whistler. Huh, I guess I didn't notice that before, but "W" looks like the theme for the summer. Casey is off for the summer with me and the kids. Jack and Owen are doing a number of camps, playing with friends, and are looking forward to the vacations, especially Whistler (they LOVE it up there in the summer). Also, we'll be playing a lot of baseball and trying to get on our bikes a bit more.

That brings me to the MS Bike Ride in September. I have to tell you that if you'd asked me in Feb if I would be doing that ride this year, I don't even think I could have answered, but just given the look of, huh...are you kidding. BUT, I actually have ridden 3 times in the last 10 days or so and after a 6-plus month layoff and 'recovery' period, I am going to try and get going and do at least 60 miles. The 100 miles might be a bit ambitious, but you never know. So, if I come at you with an email for a few $$$ to help out a great cause, I would love your help and generous support. No amount would be too small. Anyway, we'll see if I have it in me when I get a month or so out from ride day. And, I assure you that the National MS Society would appreciate your help too. I know there are so many great causes out there, but at this point, I'm fighting for one that's pretty personal to me and my family. I'll keep you posted.

I guess that's about it for now. AGAIN, thank you so much to EVERYONE who has supported me this year and sent good vibes, wishes, and prayers my way. It all obviously helped a lot! I'm doing great and looking forward to a summer full of fun, eventually some sun, and a continued smooth recovery. Love to you all. Talk to you in a couple of months unless something medically exciting (or challenging) comes up. If it does, I'll get on here and write an update.

Mike