12/22/08 Mayo Results

Yes, I know this is overdue. I got back from Phoenix and Mayo on Thursday and I’ve told a bunch of people how it turned out, but I haven’t updated the blog. I held off writing the latest update because I wanted to digest what I learned at Mayo and see how it settled in.

First, the results. The typical doctor trip is a SOAP evaluation. Subjective, Objective, Assessment, Plan. I’ve written for months on the Subjective…….I feel I’ve been improving and I reported that to Dr. Wingerchuck. No surprise there. Objective was in two parts, the MRI’s and the neurological evaluation. I had two MRI’s, both with contrast (injection of gadolinium to help make lesions leap out on the images). The MRI’s were essentially unchanged and the lesions in both my brain and cervical spine remain very small. The neurological examination, which consisted of walking, standing on heels and toes and various strength tests in the legs, was “definitely improved.” The Assessment is I still have MS, but it is overall improving. No attacks in the past year, improving symptoms, improving neurologically.

And the Plan? “Your approach seems to be working and you have less reason to begin medicinal treatment than you did last year. Keep doing what you are doing.” To hear a world-renowned Mayo Clinic doctor tell me this was the most satisfying thing I’ve heard in a long time. All the effort we’ve put into juicing and improving digestion, reducing intake of inflammatory foods that exacerbate the disease, exercising, and believing I am going to rid myself of the disease was summarized in a few short sentences. Dr. Wingerchuck even said to me as we parted, “You made my day.” I think he made mine.

The drive home to Las Vegas seemed a little smoother, the roads a little straighter. We drove instead of flew because there was a winter storm heading to Las Vegas as we left, and the storm didn’t disappoint. Some parts of town got 6-8 inches of snow and the main airport in Las Vegas was closed as we ate dinner in Scottsdale and sauntered back to our room with barely a light jacket. The snow line was I-40 at Kingman, AZ so we got a bunch of it in that area on the way down, but saw sunny skies most of the trip. The snow was mostly gone by the time we arrive home the next day, making the news reels photos seem phony.

I have tried to describe the feeling several times to people. Words don’t come out as juicy as the feeling, but the feeling is certainly there nonetheless. I don’t feel like I just won the World Series. I don’t even feel like I won a big game. It feels more to me like we are 56 and 25 at the Allstar Break (for non baseball people that’s a 70% winning percentage). It means we’re winning in general, doing better than the odds suggest you should be, but we still have a long way to get where we’re going. I’ve had this feeling before many times during the course of a season, and in my life since. It’s a critical time. Many people feel the urge to let up, to drop their guard, figuring the season is in the bag. The best players don’t do that though. Winning teams realize they have a good thing going and pour it on to make sure the winning attitude is in the clubhouse every day.

I think the biggest thing I learned from this visit was that I confirmed that want to live. There isn’t any other possible explanation for the joy I felt when I got the stamp of approval from the doctor. I think everyone goes through their “what’s the point of trying” analysis from time to time and I am certainly no exception. “Why bother juicing and not drinking when all you need to do is take the shots?” This is certainly a valid question to ask, and I sometimes ask myself. “Why go to all the trouble if we’re all gonna die one day anyway?” Yep, it is a lot of work. I might even go so far as to say it’s a hassle getting up at 5 every morning to swim, get home by 7:30 only to spend the next 90 minutes showering, stretching and juicing. But I reaffirmed I want to live. I like to fly, to visit our cabin, to see friends and make new ones, go to parties, and find solutions to problems. I also like being around to make my family know they are important people…..in their lives and in mine.

And that’s how I feel. It’s Christmas and the parties are flowing, the chocolate and the booze is everywhere. I have had a few drinks this Christmas season and I‘ve had food I don’t normally eat. But now I use enzymes to make sure I process that stuff quickly, and the next day I juice and eat a salad for lunch. Heck, today I had salad for lunch and dinner.

Another year before my next workup. Will there be an attack this year? Will I continue to improve? Was this just a year of remission? I guess time will tell, but my gut tells me I will improve. Maybe I should set up another blog or some kind of offshore betting website……..

12/08/08 Swim Meet Results

34.99 in the 50 Meter Freestyle (last for my age group), 1:19 in the 100 (second to last). These are the only two events I felt I could actually swim without making a fool of myself. Both timese were personal bests and are a snapshot of where I sit today......

Personal bests........that's what swimming is about. I think it's a metaphor.

Friday we flew from Las Vegas direct to Long Beach and tied down at Airflight where they had a rental car ready for us. Bags out of the plane, into the car, and down the road. I do love general aviation. Checked into the hotel after a short drive through the LA Friday night rush hour, then down to Belmont Shores to find the pool. Found out several of the LV Masters were in the longer events that night and doing very well. Went to Parker's Lighthouse in Shoreline Village for dinner overlooking the Queen Mary. It was a nice evening and I loved watching Kathy enjoy herself.

Saturday morning was a sleep in time and we finally got up and had breakfast near the pool (not the hotel pool) where we were joined by the first of our supporters, Dave. He popped down from the San Fernando Valley to watch my leg in the relay and then my 50 freestyle. Nice to catch up with him too.

After swimming, I showered up and we headed to Knott's Berry Farm to meet up with our family friends Paul and Roxy and their girls Makena and Sierra plus their friends Hannah and Ava. Jake loves to spend time with them, so an evening at Knott's riding the rides was just the ticket. We had a ball riding on a few of the great roller coasts at Knott's too. Of note was no bathroom emergencies waiting in these lines, some of which were over an hour.

A late night in the lounge spending time with such great friends led to another lazy wakeup for the morning. The meet was running early and I swam the 100 free about 45 minutes ahead of schedule so Paul and Roxy saw it and then headed home to San Luis Obispo to get the kids back in time for school. By this time another Southern California friend, Tish, joined us in time for some dinner at Joe's Crab Shack down in Newport Beach.

I went to bed feeling pretty satisfied that people would drive from all over to see me swim.

I woke up at 2:30am after falling asleep at about 8:30 Sunday night. It was a nice feeling. My legs that day had felt as normal as they ever had for the past 3 or 4 years, my lungs felt huge, my breathing was so easy and deep, my heart was in rythym, and I had accomplished something worthwhile. I lay awake, smiling, wondering how and what I'd write in this blog. I knew the feeling I had was never going to articulate into words adequately. Listing my times, citing a few things we did, restaurants, tourist attractions, etc. doesn't tell the story.

The story comes in the acceptance. All the people I see daily at the pool but really don't get much chance to meet were around, happy for my last place times. Victor, our coach, spent the entire weekend bouncing around like a schoolboy watching all of us swim our events, and he was even proud of how I did. I knew he was a great swim coach but I never saw such passion and love for the sport like I witnessed at the meet. Friends drove for hours to watch me swim.....and not to win, or even come close to winning. Kathy and Jake cheered me on of course too. All it was about for me was to do my best and allow that to be good enough. What a feeling. To smile at 2:30 in the morning after winning nothing but the acceptance and support of close friends. To compete in something athletic again, something I am truly a beginner in. To see the video Jake took of my starts and a leg of my 50. To breath so deeply and effortlessly. To smile because I felt good. It was a moment of acceptance.

It was a great weekend for me. Not one I'll soon forget. I know my disease took another step toward the door this weekend. It's 9:00pm Monday the 8th. Back to the pool tomorrow morning at 5:30 to 7:00, then off to Sunflower Market to get my week's worth of fruit for the juicing. This weekend we're hosting the team swim party to celebrate how well our team did. Next week is my trip to Mayo Clinic for the objective neurological findings, so count on a report after that.

12/3/08 Swim Meet This Weekend

This coming weekend I have entered into a large regional swim meet in Long Beach. I can’t wait. 555 swimmers entered, some of whom you could ski behind. The weather looks good, so we’re going to fly the Mooney into Long Beach and rent a cheap car that sips cheap gas while staying at a cheap hotel and enjoying cheap entertainment. We figured we might as well enjoy the benefits of this economy somehow.
To refresh your memory, in June of this year I joined a swim team here in Las Vegas and I was using the team environment as a way to keep the exercise up. With the exception of days out of town, pool closures, one night I forgot to set the alarm, and about three or four times I woke up with my heart out of rhythm, I have been in the pool every weekday since June, some 120 times. I’m amazed at the commitment I have managed to keep on this, as there are days when the 4:52 alarm comes pretty early.
I started out really, really slow with the team, and I’ve managed to work my way up to slow. There is a lot of technique involved in swimming and I’m only just beginning to develop a feel in the water. In fact, just this week I started “catching” water on my backstroke and can swim a few lengths without filling my throat with water. I figure I will do the 50 meter freestyle in around 35 seconds and the 100 free in about 1:25, so I’m still slow by career swimmer standards.
But this meet really isn’t so much about my times. I know I’m not going to win anything. It’s more about a snapshot of the commitment I’ve made to restoring my health so far. I also want to establish a baseline for myself to improve upon, because I know once my heart stops going A-fib (it’s been out of whack once, for about 2 or 3 hours, in the past three weeks which is a huge improvement), my feet actually start contributing to my swim stroke, and my legs begin to strengthen, I will probably become a decent swimmer. The coach certainly thinks so, as do many of my teammates.
I continue to juice daily, with rare exceptions. I have enzymes with almost every meal. I take lots of Vitamin D, E, and B-12, and a few other supplements like Potassium, Cranberry, Fish Oil, and Calcium. My breakfast is fibrous cereals, sometimes eggs and toast, and the juice. Lunch is around 1:00 and is usually a salad, soup, sandwich, something along those lines, and dinner is often a salad with shrimp. I don’t eat perfectly on weekends, and I have a burger or pizza now and again. I’m still a sweet tooth, and I sneak snacks once in awhile, but often that snack is a popsicle made from the leftover morning juice. I have not had an ounce of caffeine in over a year, my red meat is 1% of my former intake, dairy is about 5 to 10% of former intake, as is sugar. Alcohol is probably about 20% of before. I drink 95% water, a few herbal caffeine free teas, and a little rum. Not much else, though I have had a few hot chocolates as the weather cools down.
The last time I had a cold, sore throat, or any winter-sickness-type symptoms was in October of 2007, shortly after the Half Dome hike. We did that trip and then went to Big Bear the following weekend to drink at Oktoberfest. I got sick the following day. Nothing since, which is kind of amazing considering I was usually the first in line each winter to get a cold which then turned into bronchitis and antibiotic-required upper respiratory infections.
I can’t say I’ll never get the sniffles again, but I do know that my odds are certainly improving. More importantly, my MS symptoms are all as mild as they’ve ever been (keep in mind that “mild” would still be pretty tough for a person without MS), and I feel like my body is now more in balance so it can repair the damage it did to the myelin sheathing over the prior few years.
I had initially thought I’d lick this disease in a year of the natural regime, but that time has come and gone and I still seem to have it. Overall, my symptoms have essentially stagnated for the past couple of months. Some days I seem to feel almost normal, only to feel some sort of weakness the next.
Some people tell me I will never heal fully, some tell me I will get worse and that I’m just currently enjoying a period of remission. Others tell me I’ll slowly and steadily get better. Me personally? I have reached a point where I don’t know 100% for sure what the future holds on the disease, but I do feel quite strongly that I will eliminate it. I have decided not to put a timeline on it. I don’t know what my body wants to do or how it wants to do it. All I can do is make sure I keep doing the things that got me this far and continue to seek the guidance and advice of anyone and everyone. I don’t take or use every suggestion (for example, many product suggestions don’t offer anything beyond a false hope and a profit motive for the manufacturer), but I sure research everything that comes my way. And by having a blog, telling everyone I meet about the disease, and making sure nobody would ever guess I have MS, I get a lot of great information.
I think I realized somewhere along the line that I want to live, and I want a great quality of life. This economy sure adds to the challenges, but something deep inside me tells me I’ll start coming out of the disease around the same time the world starts coming out of the recession.
I’m heading to Phoenix this month too for my annual neurological workup. I have a series of MRI’s scheduled for the 17th and the doctor billable chit chat (sorry, consult) on the 18th. I want the MRI’s but I know the doctor – as good as he is - is unlikely to shed any new and unknown light on my progress or on the progress of researchers finding a cure for this thing. Tysabri and Rituxan have pretty much gone by the wayside as cures after big news flashes, and it’s likely the latest Leukemia/MS drug, Alemtuzumab, will end up in the same place.
Until someone finds a synthetic cure that doesn’t have more warnings and side effects than we’ll have swimmers at this weekend’s meet, I’ll stick with the juice.I’ll report next week on my swim times.