March 7th, 2010 Work and Play

Hi all. I guess it has been long enough since the last post. Someone mentioned that the “Happy New Year” sentiment is looking a little odd now that it is March. Mehh. Well, as usual, there have been a number of highs and lows over the last month or two. Generally, I have been doing very well, but as always, there have been some set backs, too. I have actually been off of chemo since late November and have been loving that. My PET scan looked pretty decent in November and my marker was down in December and I briefly thought that maybe this whole fiasco might be nearing its end. Unfortunately, in February, my marker was back up. It was not crazy, but it was elevated and I will probably go back on chemo in the near future. In January we figured out that I had a bit of hypothyroidism and my TSH was over 100 (normal is between 0.5-5, this hormone triggers the thyroid to do its thing. Basically it was working super hard to just get my thyroid to make a miniscule amount of thyroid hormone). It was odd that I was still just so lethargic after being off of chemo for a while and after a week or two of taking synthetic thyroid hormone, I really started to perk up. I would actually stay awake the entire day and be alert and aware, it was amazing. Another issue has been some neuropathy in my legs. In December it started getting pretty bad and lots of the feeling has been lost in my feet. Also, because the muscles were not getting stimulated, they weakened, especially my shin. This resulted in what they call foot drop. When I would take a step forward, I could not lift up my toe and it would tend to catch. Carpet was treacherous. I started physical therapy in December and the set me up with some AFOs (braces) to keep my toe up and it helped a lot. Immediately, I was able to walk like 3 or 4 times faster. Physical therapy continued and I was doing really well. I even joined the gym across the street. I was getting stronger, building endurance, and feeling really well. Then, about 2-3 weeks ago, something happened, and my muscles have been deteriorating ever since. Initially, we thought I overdid it at the gym one weekend but I never recovered, I just got weaker and weaker. The neurologist and nephrologist are puzzled. Almost all my labs are fine, I feel well, have good energy, I just cannot stand, walk, or get up out of low chairs. My calves feel like jello and are incredibly skinny. Not much more than skin and bone (and water at the end of the day). It has been pretty scary and I now use a walker just to get around the apartment. I realized the other day that I am basically like a toddler. To keep me in one place, all you need to do is surround me with a barier that is about 5 inches tall. That is all it would take. Eva mentioned I could get down and crawl over a 5 inch barrier, but I told what would I do then? Just crawl after that, I wouldn’t be able to get back on my feet. Now that I have revealed my kryptonite, please don’t use it against me. I guess I am getting some good experience of knowing what it is like to be truly mobility impaired. Poor Eva has to carry everything everywhere including supporting me with her shoulder as we go down the two stairs and the curb at the entrance to our building. She is a trooper. Hopefully we will figure out what is going on soon and then be able to address it. Well, enough blah blah about the aches and pains.

Eva and I have been keeping fairly busy. She is still going strong at Pepperdine and I actually started going back to work a couple weeks ago. I just go in one day a week for about 4 hours and do another 16 from home. The leg thing started right after I decided to go back and has been challenging, but again, Raytheon has been incredibly accommodating. They set me up with a little scooter that I use when i am at work and the lab has been incredibly welcoming and positive about my return. I think it has been good for me, too. Exercising my mind a bit. I have mostly just been writing reports which is pretty conducive to do from home. My primary reason for going back was to avoid COBRA and keep Eva and I on my work insurance but, aside from that, I am glad I am back working a bit. I like the work I do and it feels good to be a semi-productive member of society again. I just hope we can get this leg thing figured out and I can keep putting in my 20 hours.



Otherwise, Eva and I got out of town for a couple days and went down to Temecula. We really enjoy it down there and find it a great place to just hang out and relax. The notable occurrence this trip happened pool side. I was enjoying the jacuzzi as Eva finished up her work out and had the whole pool area to myself. A couple people joined me as she got changed and then, before she got back about a half dozen had come by. They seemed nice enough and mentioned that they were part of a healing group. Hmm. I asked where they were from, and most were from southern California, but a few had come from elsewhere including all the way from Germany. Eva joined me in the jacuzzi and then after her another 5 or six got in, too. Now, there is a guy with a microphone sort of organizing the crowd that is gathering in the pool. It was only about 10 minutes from when I was alone to when there were 70+ people in the pool area. Then, once everyone got a spot, the guy started playing a tape of himself going through a little chant with responses from the crowd.
“Everyone feeling good today?”
“We are feeling good”
“Everyone feeling fantastic?”
“We are feeling fantastic.”
“Super fantastic?”
“Super fantastic.”
“We are grateful for this great day?”
“We are grateful.”
“How grateful?”
“Super grateful.”
And on and on. Eva and I just looked at each other puzzled. We had both heard of groups like this, but never witnessed it fist hand. It was also a little unnerving because the 12 people in the jacuzzi were all facing us (we were between them and the pool and the leader guy) with their hands over their heads and would occasionally dip beneath the water (at which point the jacuzzi would overflow). Eva and I got out, saved our stuff from the water and decided it was probably time to go. But not before Eva “checked her emails” and took a little movie with her iphone. I love my wife, she’s awesome. From that point on, every little thing that weekend was super.



Eva and I have been trying to be a little more social, so if you have not heard from us in a while, give us a call or a txt. It has been working out really well to hang out with people in San Pedro while I dialyze. Nate and Becky have been wonderful company a number of times. I am sorry for my “hermitness” over the last few years. The first step is admitting you have a problem. We actually had a little dinner party at our place a couple weeks ago with some of Eva’s friends from Pepperdine and a few of my friends, too. It was a lot of fun and Eva set up a Hell’s Kitchen style, guess what food you are eating game. Boiled carrots and bell pepper stumped me but luckily my other two team members carried us to victory. I was surprised at how well everyone did. It was a little hectic to prepare as we did not get back from Temecula until after 3, but she still managed to pull off dinner for ten. Go Eva! I helped a little. I made the guacamole.

Last night, Eva and I went to the little thing put on by the PANCAN club at LB Poly HS. We did not really know what to expect but it turned out to be a great little event. It was a little variety show with different students singing and dancing and raising awareness. I was amazed at how well done the whole affair was. The had info packets from PANCAN, friendship bracelets, food, and purple everything. Someone mentioned that they raised over a thousand dollars. Pretty incredible considering muffins were only a buck. A number of the students introduced themselves to me and were very kind and seemed like really good kids. There is hope for the youth. This is a little hard to wrap my head around as I have grown pretty curmudgeonly these days. The president of the club’s best friends father was diagnosed last December and was sort of the catalyst and it was just really impressive what these young adults put together in a pretty short amount of time. Pretty touching, too. If the rest of us had the energy and enthusiasm of those youngsters, we would be a lot farther down the road to a cure, that is for sure.

Thats about it for now. I hope all are well and the new year has started off on a good note for everyone. As my Grandma used to say, “You have only got one body, so take care of it.” I’m trying Grandma, I’m trying.

Take Care and Live Strong,
Tyler