Friday, July 17, 2009

Chattanooga Trip

Hi all!
Well, I would rate last weekend's trip to Chattanooga as a success - we had a really good time. The travel itself took a lot out of me but we allowed enough time for rest in between events that I did pretty well all weekend. For the record - I did not set off the airport scanners, they must not scan for titanium.

Friday night we attended a minor-league baseball game, the Chattanooga Lookouts against the Huntsville Stars (the Stars are a Brewers affiliate) which was literally right next door to our hotel. Unfortunately the sun was still so intense that I only lasted 2 innings before I had to get out of the heat. We salvaged a little entertainment later that night when the game was over and they shot off fireworks. Our hotel room balcony faced the stadium and we enjoyed a good show right from our room.

Saturday we relaxed all day until the evening birthday party which was a very cool family event. They held it after hours at the Children's Discovery Museum so there were a lot of activities for both adults and kids. We had the run of the museum so the kids (and kids at heart)could investigate all the displays which had everything from a dinosaur dig to a build-it-yourself slot car station. There was an improv comedy show for both adults and kids which was very entertaining and a DJ spun music for dancing. Tom & Lisa did a great job and they had a huge turnout - probably over 150 people. Tom even tracked down a wheelchair for me so I could make my way around the museum. Well done guys!

Sunday we slept in then spent the afternoon hanging out at Tom's house with his family. It was great to sit on his big 'ol porch and listen to his family banter back and forth. Jessie and I enjoyed spending some time with the his big family, we had a lot of fun! After that we had room service dinner at the hotel then headed home on Monday.

As I said the travel itself took its toll on me. We were late catching our connecting flight Monday and had lots of walking at the Atlanta airport before we found someone to give us assistance with a wheelchair. That one event left my legs sore and heavy for most of the week, but I've gotten most of the feeling back now.

So now to answer the most common question I hear - "How ya feeling?"
There is not a lot of change day to day. I continue to have the Nexavar side effects. Dry, peeling skin, thinning hair, fatigue, stomach issues, and blood pressure issues. The mouth sores seem to have stabilized and am eating a little better but I still have a ways to go - I'm down to a svelte 180 lbs and need to stabilize it there. Unusual for me to have to cram in extra calories! The side pain from the surgery has not changed much, I have 2 weeks until I visit the surgeon again and I am hoping it subsides by that time. Then maybe I can get out of this back brace! The legs and hips continue to be tired and sore, especially after a lot of activity.

Once again - I appreciate you checking up on me. I hope you are having a great summer!

Be Well - Be Blessed

Thursday, July 9, 2009

Traveling Time

Just wanted to let you know that I will be out of town Friday through Monday with no computer. This should be interesting - it the first traveling I have done since last fall and the first since this metal was put in my body. We'll see if I set off the scanners at the airport!

Jessica and I are going to Chattanooga to help my friend Tom celebrate his 40Th birthday, he's having a big party and was nice enough to come to my party a few months ago. Hot, Hot, Hot in Chattanooga this weekend.

Thanks for the positive response to the new blog - I'll try to keep improving it!

Be Well - Be Blessed!

Tuesday, July 7, 2009

Email Address Reminder

Hi! I realized I did not put my email address in the last post so you can send me commnets or questions about the new blog site. it's

Talk to you soon!

Welcome to my new Blog Home

Hi Friends!
Hey - you found me! I am glad you did. Sorry about having to change the location of my blog but Yahoo decided to change their setup (again!) and I had too many issues anyway. So let's hope Google's blogging tool works better. Let me know how it works for you or if you have problems viewing anything that is posted.

On to the health update. I know it has been a while, I won't insult you by apologizing again, but honestly I planned to post last week but was too sick for much of it.

My back has been healing pretty well, the spine repair itself rarely hurts, only when I am stupid and bend or stretch too far. Remember the "act like a Penguin speech" from the surgeon? He was very right, I need to keep my arms in and locate my rear end close to whatever I want to pick up. The huge side incision is healing as well, although at a snail's pace. If I keep the back brace on (which I have to wear for another month at least) it feels better, I guess the brace keeps everything in place and tight. When I have the brace off (for short periods only!) it feels like everything is hanging loose. A few times a day the side seems to "lock up", the only way I have to describe it is that someone stuck their hand 2 inches inside my skin and started twisting my insides. Ouch! When that happens I lay down for an hour or so and the feeling fades, thank goodness for pain meds! Fortunately this has been happening less and less.

Big News! Great News! My CT scans last month looked "stable" which means there were very few changes or growth in the size and numbers of tumors. As I talked about last time I restarted Nexavar on June 12th at the 1/2 dosage that was planned. I got freaked out when my entire body turned beet red within 6 hours but that was just an initial reaction. Fortunately the sunburn-looking redness faded within a few days. I do have most of the same side effects as last time but at a MUCH lower intensity, plus a few new ones. The ones making a repeat appearance include rash plus dry and peeling skin; Jessie is back to following me around the house with a dustbuster to clean up my skin flakes and hair. Yes that is correct - hair! I never expected to lose my hair but I guess I can't really call myself a cancer patient unless I do. It's not all gone but it is going at a fast rate - every time I look at myself in a mirror I do a double take. It also freaky to run my hands through (actually now over) my hair and feel a very thin, stiff, brittle feeling. I guess I can now make use of that large collection of hats I have!

The other new troublesome side effect is mouth sores. So far they are small but they sure have made eating a painful experience! I have not had much appetite lately anyway but this new condition has made it much worse. I have lost 25 pounds in the last month, which if you add that to my balding head means I really look like a cancer patient now! But seriously it is a real problem trying to get enough calories in. The doc gave me some "magic mouthwash" yesterday which deadens the feeling inside your mouth; I am supposed to use this right before eating in order to deaden the pain and let me eat a little more. I tried it once so far and it seems to work but eating is still not a pleasant experience - we'll see how it goes from here. Even ice cream hurts which is really rude!

At the beginning of August, about 60 days after starting Nexavar, I will go through another round of CT scans to check on the progress. I am really anxious to see if this wonder drug will shrink the size or number of tumors. I am looking at the bright side and thinking that if the drug is having these effects on my outside they must be doing something on the inside. Sounds right, doesn't it?

I am trying to get my old Yahoo posts listed on here but as usual am having a few problems with Yahoo's service. I will work on getting everything updated and easy to use, thanks for your patience.

Be Well - Be Blessed!