"probably" disease free

This will be my last post! Our most recent trip to Mayo was last week. I had a scan and blood work on Thurs and Dr. visit on Friday. After chatting with the Doc for a 1/2 hour we got out of him that I am "probably" disease free at this point (just like most men- very noncommittal)!!! He won't call me "cured" for awhile yet, but we're running with disease free for now. The bone has grown back where most of the tumors were (the spine seems to be going a bit slower), and we also talked about getting the plate out of my leg. Doc pulled up the picture of it on the computer, did a small chuckle and said that it is a pretty substantial piece of hardware and he doesn't think an orthopedic doc would want to take it out, but I was welcome to try. I might wait until he calls me "cured" before we go down that route.

Thanks to all of you who came on this journey with me. I have many new friends and old ones that helped me in too many ways to count. I learned that I'm horrible in expressing my love for family and friends, but I do love all of you and want you to know that I could NOT have done this without all the kind words, prayers and good energy. Much less the babysitting, meals, treats, house cleaning, etc...etc...

All my love,
Liz

As good as it gets

There was another scan last week. Things are looking good! Or rather they are looking the same as the Oct scan. I thought we were supposed to be looking for improvement (I know, kinda crazy), but Doc said that it might be "as good as it gets". The bone has grown back on the smaller tumors and the larger ones on the spine show calcification. The bone may not grow back on the spine, but since there is calcification that shows progress and the cancer isn't still chomping away on me bones. Arghhh. Doc said it was good news. So I asked for the next scan to be in 6 months and got a big NO CAN DO. So we compromised and are going out 4 months with the caveat of letting him know if I start to feel like crap. We also asked about getting a PET scan next time and he much prefers the CT. The PET would show cancer activity, but you also get other junk in there (like the time they saw the spots on my lungs and it was just a cold - or when my whole tongue lit up and I thought I had mouth cancer....) so apparently my Doc doesn't like having to deal with people freaking out in his office for no reason. When Doc asked about the leg, I started whining about getting the plate out when the cancer was gone; he agreed to let me know when he is comfortable with that, but it's going to be awhile. Fine.

So what to do with the blog.....By not writing all the time I'm saving you from this:

Cereal for breakfast today, couple of celery sticks and a big green smoothie for lunch. Great day!

Or this:

Brrrr was it cold out. Even the dog didn't want to go outside today.


Or this:

Can you believe the price of organic foods??? What's a girl to eat?

SO. I'm tempted to pull up stake and mosey out of this medium. Haven't decided for sure yet. But I'll let you know if there is never going to be another posting - just so the two of you still reading don't waste your time :)

Ciao

I haven't written anything lately, because on the cancer front there really is no new news. There is news about the girls weekend last month, when Carolyn, Lisa, Terrie and I met Mindy down in St. Pete's. WHAT A BLAST. Before we left, I was really missing my girls, and thought I didn't really need a trip. I couldn't have been more wrong. That trip left me happy, content, feeling special again and was just a darn good time. It is a bit of a letdown to have to put a suit on when there are radiation burns all over my body, along with surgery scars. But as long as I don't care, it doesn't seem like anyone else does either :) However there is something about being able to stare or walk next to the ocean and laugh with girlfriends that is good for the soul.

The next scan is in the beginning of January. No chemo, no medicines, just trying to focus on diet to move this along a bit faster. There was a couple weeks of "what can I possibly be thinking, even if I don't die now, it'll happen within 10 years". That's what has happened to the people that I've known, so why should I expect to be any different? That's a hard one to get through. You tell yourself that there's no guarantee you won't step off the curb and be hit by a bus tomorrow, or I'm lucky to have this time. Both are true, but you still would rather not have the odds stacked up the way they are. I don't know how to explain it, but like I said that was a couple weeks ago. After the trip, I haven't worried at all about it. Thank you God for girlfriends.

Salut

Scan was fine

There's good news :). Joe and I went down to Mayo on Monday for tests, scans and a Dr. visit. Turns out the blood work was fine, the scan showed the smaller tumors are getting even smaller, and the two larger ones are better from the April scan, but the same as the July scan. The fun part was taking steroids since I'm allergic to the contrast dye in CT scans. The idea being they suppress the immune system so that your body doesn't react to the dye. However they also suppressed everything else and I'm left with a nasty cold. No flu, but I'll still be hiding out in the house for awhile. The steroids didn't completely work either, I did have a reaction to the dye in the form of hives on my face and head. Nothing major enough for the nurses to come running, but they stared at me for 1/2 hour after the test. Probably thinking about how cool hives make a person look.....

Now I can stop freaking out about the cancer causing the fatigue and work on the usual suspects. Even though I said I was better at the diet, it could still be improved dramatically. And it's time to start walking again - right after I can breathe. My sister brought up the allergy explanation and that one works pretty well. I felt fabulous last Thurs right after a frost. For now we're going with that!

Thank you, thank you, thank you for the calls, emails, cards and comments. I feel truly blessed.

Full disclosure

We're back on the rollercoaster :). I've been tired for about a month and keep waiting to feel better. For awhile it made sense that it was diet (it was summertime after all), but I've been doing better on the diet and still feel crappy. My teeth hurt sometimes, my sinuses hurt sometimes and my intestines aren't happy with me sometimes. There have also been a couple sore in my mouth, which I haven't seen since the last of the chemo. Last week I went to see Dr. Timmerman and he checked my thyroid and blood counts. Since we haven't heard anything, I'm guessing I'll get the card in the mail saying everything looked fine. Isn't odd when you go in HOPING for a sinus infection or a thyroid problem?? I also asked about anything I could think of, lactose intolerance, celiac, a flu bug that won't develop or go away, dehydration, ANYTHING but the big C. So this morning I finally bit the bullet and called Mayo and asked for the next scan to be moved up. We haven't rec'd a schedule yet, but it was supposed to be around the end of Oct.

I guess you look for any explanation other than the obvious.... it's like knowing there's an elephant in the room but still trying to figure out where that big pile of crap came from. So I haven't written anything, but since you're asking, it looks like I'll need your prayers, thoughts and good energy for a little bit longer. Please. In the time before the scan, I'll still be trying to figure out if there are other animals in the room that could also have left a pile of poo. You never know, maybe there's a rhino hiding behing the elephant!

Where's summer?

School starts in 1 1/2 weeks. Can't believe it. We have tried to pack as much as possible into this summer and I'm now tired. So are the kids, so it's been very successful! Last week we were on a houseboat in Voyageurs Nat'l Park. Very, very beautiful and more fun than any of us expected. Mom bid on a houseboat at a raffle and had the high (and only) bid. We were a little worried about the weather (Mary said that if it rained, we wouldn't need to see each other again until Thanksgiving), but the weather was fabulous and we swam Sat and Sun. Most of us jumped off the slide in the back which was the favorite part for my kids. I'll post some pictures next time.... There was also a tickle fight which was the favorite part for a couple of the other kids. Lots of laughs, lots of food, lots of sun. Hard not to have a good time!

I have yet to golf this summer, Joe wants to go up to the Wilderness for a round, and there is a hike on the way up to the cabin we still haven't done. There is also the tube ride down a river that I promised a nephew and that will have to wind up the summer. The State Fair is here and this is the first year that I'm not looking forward to the cheese curds. There is probably not a ton of health food out there, but we'll survive :)

It's been a year since the first surgery, and I'm still kickin'. The moral of the story is not to let ANYONE label you based on statistics.

Summers are grand!

Grand Canyon Nat'l Park

The trip out West was incredible, we managed to squeeze in everything I wanted to see! The Grand Canyon was, of course, awesome. The hike we chose was mostly in the shade, and I kept Kate on the inside of the trail while we went down (and up). We did not make it to the bottom and some day we're going to do that, but not this time.

The next day we went up to Page AZ, and took a smooth water raft trip down the Colorado toward the Grand Canyon. The raft went through Glen Canyon and was very pretty. Joe claims I got into a fight with the guides, but they wanted us to sit on the tubes of the raft and I was worried about the kids (ok Kate) falling into the 46 degree water. If it was a fight, I lost since we all ended up on the tubes. No one fell off and we all managed to survive getting into the water at one of the stops.

Glen Canyon

After the raft ride, we went to Monument Valley. Beautiful, but you can sure tell it's not a National Park. The NP's are run SOO well, with maps, hikes, roads, bathrooms etc.... so from there we went up to Moab to sleep so we could hike in Arches Nat'l Park the next day.

Arches Nat'l Park

From there we did another marathon drive over to the West Utah and stayed in Cedar City. From there we headed for Bryce Canyon and the next day was Zion Nat'l Park. Both were gorgeous, but I think I like Bryce a bit better since the formations (hoodoos) were more unusual.

The kids didn't fight (much) and we ended up in Las Vegas for the last two nights and stayed by the pool. We were at Mandalay Bay (my friend Keith works for MGM and got us a deal), but since we checked in late, we were upgraded to the Four Seasons. Since the Four Seasons didn't have queen beds, I wanted to go back to Mandalay, but they were booked up. Joe claims I'm the only one in the history of Vegas that wanted to get out of the Four Seasons. It worked out for the best, because we could use the Mandalay's pool but they couldn't use ours. So we would go over to the wave pool and lazy river at Mandalay, then come back for quiet time at our pool. The quiet pool also had all the perks, they brought around frozen melon balls, cleaned sunglasses, had ice cold pitchers of lemon water at the tables which they kept filling with ice, evian face spritzers (yes, they sprayed our faces with Evian water), cold face towels. It was sweet. And we were on the 36th floor so we had an incredible view. Awesome, awesome, awesome.