My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, April 13, 2010

New Survivor Story!

Enough about me...I want you to read Daniel's Story, he sent it to me just today and I wanted to post it right away, so it is already posted in the "Survivor Story" section of my web site and blog. Daniel was diagnosed with extensive disease at Stage IV and was initially told he had 12-18 months to live. He is an almost 10 year survivor now. I loved his "Ham Causes Cancer". In my house "Egg Nog Causes Cancer"! I had my first cancer symptoms after drinking egg nog I assumed was bad, to date my kids no longer drink egg nog as they associate it with cancer. Ham was the beginning of his journey, egg nog the beginning of mine. Fun trivia!

I would like to thank Daniel for giving hope to so many, he, and the other survivors in my "Survivor" section are my heroes. I am so grateful to those who are willing to share their stories.

It was interesting to me that both of my recent survivors have talked about the fact that we never really feel "safe" again after a cancer diagnosis, I am the same even at 8 years cancer-free. We forever after live with a sense of uncertainty...goes with the territory.

While it is a difficult way to live, it does have some benefits. I know I now prioritize better; lots of "before cancer" things don't make the cut in my world now, I live much more purposefully, I think. And that's a good thing!

5 comments:

Big Fish Diaries said...

Carolyn
I had a ruptured appendix on 2-9-09 and I am sure that you can figure out the rest of my nightmare! I just had a consult with Dr. Sugarbaker and Dr. Sardi and neither have seen kidney involvement called membranous Glomerulonephropathy along with PMP. My kidneys started acting up about 3 months after my ruptured appendix. I think it is related to PMP however they are puzzled by this. My MOAS is scheduled with Dr. Sardi on June 15th.
I know of a 6 year survivor of Dr. Sugarbaker from my home town who has been a tremendous help and support to myself.Her name is Barb and I will ask her if she would be willing to post her story....I believe that she would love to.
None of us are as good as all of us!
Mark

Carolyn Langlie-Lesnik RN BSN said...

Hi Mark,

I'm sorry you are having to deal with this and wish you luck with your surgery in June, I think a lot of Dr. Sardi. It would be wonderful if Barb was willing to write her story! It would mean a lot to many!

Take care, and I wish you the best!
Carolyn

Barbara said...

Hi Carolyn,

I've just started reading your blog and I'm really enjoying it. The part where you mention the lack of a support group or even awareness of the type of cancer really resonated with me. I had cytoreduction and HIPEC in February of this year. No one I talk to has any idea of what it means, how it makes me feel, etc. I'm from Canada, and like you, I don't often encounter people who have "been there, done that". Thank you so much for putting a voice to this.

Hrund said...

Barbara from Canada. I am an Icelandic woman scheduled for CR and HIPEC in May. I would love to hear more from you and how you are doing.

Hrund Helgadottir
hrundhelga@gmail.com

Alice R. said...

Post-Script to Alice's Survivor Story:
Just back from Memorial Sloan-Kettering, where my drs told me that they don't expect this cancer to return, tho they're still going to keep seeing me regularly (and making no promises.)

Now all I have to deal with is the repair of the incisional hernias in June, as well as an exploratory surgery, to ensure that nothing's hiding from the CT scans.

It's a long hard road, but I've made it through the tunnel, and am doing great! Wishing the same outcome for all of us.