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.

Wednesday, May 20, 2009

My Silver Lining

I was reading the comments to my last post. Thank you Barney, Karen and Wendy. Nice to "meet" you Barney, I'd "met" Karen and Wendy before, they are people I am so glad to know and who inspire me.

I loved Wendy's poem....and could relate. We all know the dark clouds; we all struggle with uncertainty, lack of control and our loss of innocence post diagnosis, the scares, the anxiety of waiting for scan results. But she’s right, there are silver linings we can find when we look.

The silver lining in my own cancer experience has been the people I've met who have also been diagnosed with cancer and who have shared their lives and thoughts with me on our common journey. I've felt that I am not walking alone. We are family in a sense. I looked up the definition of family, it includes "a group of people united by certain convictions or a common affiliation: fellowship, a group of things related by common characteristics”. One of the things I've learned as I grow older is that family to me encompasses much more than just those who are genetically related to me. To me family are also the people I connect with and share my life with, to that end I belong to several families that are all just as important to me as my genetic one.

I loved the book "Dancing In Limbo", not because it gave me the answers I was seeking, but because when I was going through a difficult time it helped me know that I wasn't neurotic, that the feelings I had were shared by many others in the cancer community, that the uncertainty and "limbo" I was feeling was normal in the cancer community, even many years out.

I loved that in the comments to my last post, the word "exhausting" was used in relation to trying to live every day to its fullest and to make the most of every moment. It is an exhausting way to live, though I'd never heard anyone else use that word, it is so appropriate. I didn't realize how much fun assuming and planning for a future was until I was put in the position of not contemplating a future. I miss feeling okay about wasting an entire day doing mindless and non-productive things.

My heart so goes out to Karen, I so relate to her comment "I've discovered I have created a mask that I wear most days - I go about disguised as a person with a future, even if inside, I doubt there will be a long one. I'm getting to be a pretty good actress. Some days I can even fool myself." I've done exactly the same thing before, worn the same mask.

And Karen, you and I received the same dismal prediction for the same cancer and same pathology; we were also both Stage 4. So I know how hard it is to live with that sense of impending doom and likely recurrence. I am proof it is possible to defy the odds, though I didn't really start feeling less vulnerable until maybe the 6th year cancer-free. At seven years I felt even less vulnerable, then at 8 years, I had pelvic symptoms just about the time I heard from an 8 year appendix cancer survivor just diagnosed with an aggressive recurrence. I can tell you, while the sense of living in "limbo" never fully goes away in ("Dancing in Limbo" they found that even long term survivors continued the sense of living in limbo), the limbo does become less prominent with time. I still don't take the future for granted and don't feel totally "safe", but I feel safer than I did the first several years. I now can say "next year", I can plan (though tentatively) for the future. I even sometimes contemplate going to grad school. I plan vacations. I put money toward retirement, but not with the certainty it will ever be of value to me. It's more for "just in case" I reach old age. But I don't have the before-cancer innocence and never again will.

Barney, I know another person who is post appendix cancer diagnosis while struggling with bipolar disorder. I know your road is a very tough road.

I've found that some of the things that have been so difficult for me as a cancer survivor are less so when I know someone else shares my experience, understands and can relate. I love a saying I heard once that difficulties are lessened and joy multiplied when shared. In that sense I think the best thing we can do for ourselves as cancer survivors is to connect, support and empower others in our community, in our "family". I am looking for ways to make that happen.

2 comments:

analog9 said...

Hi Carolyn,

Thank you for the kind comments about my post to your blog. I endured my sixth chemo treatment this week and took the pump off today. I was severely depressed and took a long ride to the mountains and desert of central Oregon. I drove by a place where I gambled but did not go into the casino. I turned my finances over to a third party payee and ripped up my credit cards. I haven't gambled in over 2 months and am attending Gamblers Anonymous meetings. I did not go to treatment today, though.

Take care and best wishes,
Barney

TheLifeExperiment said...

My name is Tiffany, and I started a blog to talk about my experiences with cancer from a young adults perspective, I lost my mother less than a year ago, and i plan on writing about my experiences and my positive efforts. If you know anyone kids who need to feel like someone understands send them my way. Thanks!