Thursday, April 27, 2006

New Hope, Colorado

According to my AAA Road Atlas of the United States, there are sixteen states with a town named New Hope: AL, AR, GA, IN, KY, MN, MS, MO, NY, NC, OH, PA, SC, TN, TX, VA. Georgia, Ohio, and Texas each have two towns named New Hope (one in Ohio is spelled Newhope), and North Carolina has three. There is not one in Colorado, but I'm starting one in my front yard.

It is a beautiful, spring morning in Ouray, Colorado. Our grass is green way earlier than usual. The daffodils are blooming. There's still snow on Whitehouse Mountian in the eastern end of the Sneffels Range which I can see across the valley from the window at this computer desk, and we could have a snow flurry in town tonight. But spring has come very early for us this year which I count as a blessing. Each date that I cross off on the calendar I wonder, "Will this be my last April 27th?" My doctors and many friends have given me some new hope.

After my last visit with my oncologist and now that I'm "almost tapered" off the steroids, I feel like my health has returned to some state of normalcy. I had been really bummed because I didn't think I'd get back to normal in any way as I'd known it before. We really won't know for two scans from now in July if the clinical trial drug is working, but I feel good knowing that I'm helping to figure that out. There may be another clinical trial in the works for me, if my tumors don't respond to the Sorafenib. And chemo is always an option and I've corresponded with some people for whom it has worked well.

My rash has pretty much cleared up. The Aquaphor cream they have had me use has done wonders for my dry skin. It is good s**t! Also, I got to meet a woman named Margaret in Denver through my good buddy Jody, herself a cancer survivor. Margaret has beat the odds on pancreatic cancer and used to have my oncologist, Dr. Bergen, when he was in Denver. (We both are big fans of Dr. B.) Margaret gives me lots of hope, too. She also turned me onto Palmer's Cocoa Butter Formula with Vitamin E skin cream. We showed each other our surgery scars and I could barely see hers. She gave me some to try, and already I think my scar is lighter.

I have this thing I call "Carolineland". In it are all the things I love to do like knitting, going to the movie, hanging out with my husband, my cats, friends, and family. Tap dancing, acting in the melodrama, volunteer work, the bookstore, my radio show, bowling, writing, travelling. All my favorite stuff. New Hope is now a little village in Carolineland where I have all my cancer friends living in my heart. Or friends facing other big challenges. If you don't have your own ______land (insert your name in the blank), you need to get one.

So I am going on with life. I'll be back on the radio show this Sunday afternoon. I may volunteer at the Humane Society Thrift Shop on Saturday afternoon. I'm going to the Chamber's retail committee meeting tomorrow morning. I'm doing the melodrama this summer, and our performances will be August 2nd - 4th. I'm taking two writing workshops this summer, one of which is in Taos and includes a screenwriting class. I'd like to do a documentary about my cancer experience and am hoping to work with the Ouray High School film class. I also have ideas for other short comedy films.

I have to scoot. I'm running the bookstore today and I have a sales rep coming first thing at 10am. I havet to go "fling" myself into life, as my ex-husband Lance used to say, like some social lemming.

So I'm just up here in New Hope, Carolineland, Colorado, trying to melt those tumors or at least get them to stand still, meanwhile flinging myself into life. Stay tuned. I have a lot more to say.

2 comments:

The Johnson Family said...

Hello out there in New Hope Carolineland, Colorado - I like that!!! I enjoyed reading your blog today; I wish I could add just a little bit of humor sometimes to ours but I'm afraid I have become a little "numb" lately
but I will snap out of it - just has to do with that thing called a
cancer emotional roller coaster. I have always been a people person and Sam hasn't but he seems to have more of a personality lately than I do. I know we will get good news next Thursday and then you will see and hear and "new me".
I envy your view - I absolutely loved our skiing trips to Colorado;
we would drive for 26 hours, ski for about 4 days and then drive 26 hours back. I would make homemade tea cakes and we would stop for coffee and eat tea cakes. Good memories!! Sam still has a horrible rash but hopefully that will subside since he has finished his treatments. I have been reading some really good things about Erbitux lately so maybe, just maybe, it will work for us. I'll send some prayers to New Hope.

Deborah said...

Dear Cancer Bloggers:

This is a message to those of you who maintain/read/participate in blogs related to cancer. Might we request your assistance in an academic study about cancer blog usage?

My name is Deborah Chung, and I am an assistant professor at the University of Kentucky School of Journalism and Telecommunications. My research focuses on the use of new communication technologies and their potential to empower information consumers. Currently, I am interested in examining how health information seekers, particularly cancer patients and their families/friends, adopt blogs.

I am teaming up with Dr. Sujin Kim, also at UK, who is an assistant professor in the School of Library and Information Science and has a sub-specialization in medical informatics. She has been working closely with the UK Cancer Center to build a biorepository information system (UK-BIS) for lung and ovarian cancer samples. Together, we would like to learn about how new information channels, such as blogs, are being used by cancer patients and their families/friends — specifically we are interested in their motivations, uses and consequences of using blogs.

As approved by our internal review board (IRB) at UK, this study is an anonymous survey that does not carry any risks to cancer patients. At the same time, we believe the information gathered from this study will greatly contribute to our understanding of the adoption of new communication technologies by cancer patients. This information will in turn assist in supporting the needs of cancer patients for future information technology and service development.

Thus, we would appreciate your participation in our survey. You can find the survey here. You might get a notice regarding the validity of the certificate. If that happens, please continue to proceed.

We appreciate your time, and thank you in advance for your help.

Sincerely,

Deborah S. Chung, Ph.D
Assistant Professor
School of Journalism &
Telecommunications
University of Kentucky
dchung@uky.edu

Sujin Kim, Ph.D
Assistant Professor
School of Library & Information Science
University of Kentucky
sujinkim@uky.edu