Two more days? How about a little history.

Two days until I should be admitting to the hospital. Of course, with how all of this has gone over the last 7ish months, you never know. I definitely don't put all my faith in timelines with this stem-cell study. I told Casey today that the way in which this LONG process has gone shows why only 10 people have had the procedure done at Fred Hutch so far. By that I mean, many people apply and want to do it, but the road to actually starting is quite long and arduous. Not only does living with MS make you stronger, but waiting for study protocols to all line up makes you become a much more patient person as well.

Well, it's Sunday, a day for football I know, but how about a little bit of 'reflection' too? I figured that I would run through the MS story and how I got to this point. I know this may be a repeat for many of you, but I'm thinking about the few people who don't know how I got in this situation, but also for my kids, who may read this in the future. Since we only told Jack (and Owen) about my MS diagnosis in mid-Sept, this may someday help them make sense of how this crazy thing all started.

Anyway, many of you probably don't know a ton about multiple sclerosis. But, it affects a lot of people. Numbers vary, but approx 1 out of every 700-800 people in the U.S. have it - that's a lot. And, each person's journey is variable and takes a path unique to them. One of the only things in common is that it pretty much sucks for all people and their families equally. While some people can have a very mild, slow-progressing type and live with it for 40+ years, some begin with a very aggressive (called primary progressive) form which debiltates them very rapidly. Then, there is a large spectrum in between, some progressing more slowly and some more quickly than others. In addition, the symptoms each person experiences also vary a great deal. I can't even begin to list all the 'possible' symptoms here, but mine include a lot of sensory issues and leg weakness. Of course, when you're having an exacerbation (also called a relapse), symptoms are worse, then they subside to some point in between. The problem is that after a relapse, most of the time you return to a new 'baseline.' This is the progression thing happening, as you are likely to carry some small (or not so small) increase in disibility with you after each relapse (also called a period of remission). Over time, these little 'increases' end up creating significant disabilities in some people.

I was diagnosed by an MRI in Oct 2007. Since then, I have had a few relapses and each time I'm not quite back to where I was before. My symptoms started with numbness, itching and pain (like getting stuck with needles) in my right arm and within a couple of days I had quite a few painful and uncomfortable issues in both my right arm and leg. I had as far back as Dec 2005 (hindsight is 20/20 you know) noticed some numbness or tingling in an arm or leg before, but always just thought, "I tweaked my neck" or "I strained my back," so I didn't ever go in for it. In Oct 2007 when it involved BOTH my arm AND leg, I knew something was not right. But, let me give you an example of how messed up this disease is. In 2007, before getting diagnosed, I climbed the Columbia Tower (the climb for Leukemia/Lymphoma) in the 8th fastest time out of 4,400 people, I rode 15 centuries on my bike, and I hiked over the Olympic Mountains with a friend (Neil, on the Big Stupid Hike, as our wives call it) from Lake Quinault to near Port Angeles in one day (actually 20 hours). I'm not saying this to highlight anything about me, but to show how weird and unpredictable this disease is. I was doing all of this stuff, seemingly leading a normal life, jut a few weeks to a few months prior to my diagnosis, then whammo. It's mind-boggling to me sometimes. As far as treatments, there are a number of options and things have really come a long way in the last 15 years. Of course, there is no cure, but from the medications, you get the hope of slowing down the desease progression. The medication that I was on wasn't really working well for me, but I should mention that these meds are great and they really help a lot of people to live longer and more fulfilling lives with MS.

Between my diagnosis and April 2009, I had discomforts here and there and a few limitations at times, but on the whole, I was able to keep up with the kids, take some great vacations, coach baseball, work just fine, keep up on house projects, and generally do what I wanted. Then in April, I was at a party and was talking with a couple of Casey's friends (Kim and Blayn - love you guys), and they mentioned that they had a friend who had a stem-cell transplant for his MS. We chatted, and I asked a lot of questions, but told Casey on the way home that they must be talking about something else because "I've never heard about a stem-cell transplant for MS, but, I'll look into it." Over the next month of so, I asked my doctor, looked up the HALT-MS study, and got to talk to the guy who had the stem-cell transplant (Sean, you were a big help. Thanks!). I then contacted the research nurse on the study at Fred Hutch, gave them my medical records, had an appt with one of the doctors, then waited...for a long time. Finally I got a call in late July that I had been accepted - of course this was pending my insurance approval and no issues arising in the pre-transplant testing.

The insurance approval came quicker than expected, then on Sept 16th, I began the process of being tested, and I mean tested. I'm a nurse in a Cath Lab and it takes me a month to stick as many needles in people as I had stuck in me. But, no pain, no gain, and I really appreciated that they need to be very thorough. So, thank you Seattle Cancer Care Alliance (SCCA), you guys and gals are great.

I had the IV catheter placed in my chest on Sept 28th. At this point I thought I would just sail to the 'admit day' at the UW. Not so fast. I got shots of a med called GCSF, then went through a process called apherisis to 'donate' the cells that I will be getting back after I go through chemo. Then, on my last day of apheresis, I began to get a runny nose. I told them and they did a sinus culture which was positive for Rhinovirus (aka, the common cold). I never got more than a runny nose, but I continued to test positive for the next 7 weeks. During the last couple of weeks the study was also put on "hold" by the National Institute of Health, so that was up in the air too, even if I did eventually test negative. Finally, last Tues, I tested negative AND they heard from the NIH the day before that the study could begin again. So, here we are.

This brings us to the last few days. Well, I've had a weekend of being sequestered at my mom's house in Ballard, and then will have an appt tomorrow at the SCCA (all of my care has been done at the Cancer Care Alliance, as they are the clinical arm of Fred Hutch). I've been told that I will then admit on Tues morning to start my treatment. I guess I'll hear tomorrow it that's actually the case. Stay tuned.

I'll talk to you all soon. Again, thanks for reading and any comments and/or questions along the way would be appreciated. It lets me know that people are out there and gives me (or Casey) something to do. Now that this thing is hopefully going to get rolling, and no more history will be needed in the blog, so I'll try and make this my last really long entry. Only the sorted daily details from here on out.

In the news this weekend: Huskies crush Cal (sorry Casey) to end the season with 5 wins, Amanda Knox convicted of murder (I don't agree, the Italian justice system is a joke), and the Seahawks fired Tim Ruskell and beat San Francisco to get to 5-7. As you can tell, kind of a slow news weekend.