2 1/2 years later..........July 29 2010

For so long I have been meaning to update this, but was unsure how to "catch-up".

Then my Uncle John said, "Just let people know you're ok."

Guess what? I'm ok!

It has been more than 3 years and I am doing great.

My lung studies continue to be stable and the inflammation in my lungs remains gone.

I am back to work and I am still trying to catch up with my girls.

I am back to living my life and appreciating all of it.

(Ok, sometimes- after a particularly long day with a certain 10 year old and 6 year old clawing each other's eyes out- I have to remind myself to appreciate ALL of it.)

I am 100% sure that the stem cell transplant saved my life!

Hello...... Is anybody still out there? October 2007

Me and the girls

In an effort to stop from feeling so ashamed every time someone mentions my blog, I am going to do a quick catch-up.
Plus, I am trying to educate people about the whole stem cell process, and I need a place to send them.
So, here goes.......
(I am a little rusty at this, so bear with me).

OCTOBER 2007
6 Month Check-up

My DLCO is up!!!!! (I really cannot tell you-due to my puny brain (I swear it was the chemo)-what DLCO actually means. It is a lung function test. Suffice it to say that a "normal" (and I use the term loosely) person's is 80%.) Prior to my transplant mine was 43%. It is now 57%.

My chest xray and CT scan show improvement. The inflammation has gone down. The doctors can't hear it in my lungs anymore.

My skin score has decreased. The higher your skin score, the harder your skin. Prior to transplant mine was around 18. (Not too bad by Scleroderma standards.) My skin score now is a 12. Some places even feel darn right loose. (Don't think I haven't realized that I can never have botox or collagen injections or a face lift. It is just like when I wanted to try to have a breast implant auction item at my fundraiser (see November 2008) and someone far more sensitive and with much more class than me brought to my attention just how wrong that would be. Come on, I still think it would have been the biggest money maker.) I can totally feel the difference in my skin. I can make a fist. I can cross my fingers (and I do every time I make a promise to my kids). I can whistle. I can cut food without pain. I can brush the girl's hair. (Shhh. Don't tell Mark.)

My energy is getting better and better.

I have exceeded the Dr.'s expectations. The hope is to halt the disease. My condition is improving.

I could not be happier!

This picture has nothing to do with me or my transplant, but I think it's hysterical. The girls turned our dog into "Grady Montana". There are actually people out there who are scared of this dog. (Note to scary burglars--he can be FIERCE when he needs to be!)

November 2007--Graze and Groove for Scleroderma

The fundraiser I held for Dr. Burt was a huge success. It was everything that I hoped it would be. I had a tremendous amount of help from so many generous people. I sit here in May 2008 and I still have thank yous to write. (Don't tell my Grandmother). All told we raised $40,000. The money was given to Dr. Burt to further his stem cell research for Scleroderma patients. Dr. Burt came and spoke. The music was awesome, the food was great, the venue was perfect, the auction was a hit. I am planning on doing another one. I need to start a foundation first. I am thinking of next summer.

Again, a huge thank-you to everyone who helped me. It was humbling for me to see the outpouring of support.

You can check out the fundraiser website. It is in desperate need of an update. (Real shocker). I do plan on getting pictures on the site. (It should be abundantly clear to you that I am not exactly on the fast track here, I would wait a few months before checking it. Do not subject yourself to daily disappointment--Mom.)

Here is a picture of Mark & I from "Graze & Groove for Scleroderma".

December 2007-January & February 2008

Making Christmas cookies.

Putting in requests.
.

Favre love.

Not too much to add. It was nice to enjoy the holiday without having the "will this be the last" thought in the back of my mind.

(I do think that the quality and quantity of my gifts went downhill from last year.)

March 2008--Watch out Washington

March.


In March I had the privilege of traveling to Washington DC to speak at a congressional briefing on adult stem cell transplants. Dr. Burt was asked to speak in support of the Patients First Bill. Dr. Burt was also asked to bring a few patients and he graciously asked me.

Click on the following link to watch us in action.
http://www.youtube.com/watch?v=UX4lgz0-R5I

Click here to read transcripts of all the stories.
http://www.stemcellresearch.org/testimony/capitalhill_briefing.html


It was so empowering. An incredible experience. I just hope that I was compelling and that people gained some insight into the adult stem cell transplant process and what it can do to help people.
The group that took us out to DC has a lot of information on their sight. (Don't let the "religious" theme of the group scare some of you off. They have a lot of insight into the stem cell controversy. Unfortunately, I am too stupid to attempt to speak for either side. All I can do is talk about my experience.) www.stemcellresearch.org/.

Dr. Burt/Me/Bary Goudy

Senator Brownbeck/Me/Barry/Dr. Burt

Florida- It's good to be back!

The day after I got back from D.C. We went to Florida with my family. We did not go last year due to being at the start of my stem cell transplant. It was such a great time. Here are some pictures.(don't think that the name of this place was lost on anyone.)