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.

Monday, February 8, 2010

Both Sides Now

I've recently been in contact with a woman who's very good friend was diagnosed with advanced appendix cancer, she's not sure if all of the cancer was removed during her surgery, and she was not able to receive HIPEC at the time of her surgery. She wants her friend to be proactive, to be eager to start chemo, to have an "I will beat this" attitude. She doesn't want her friend to "give up". But her friend has not been passionate about pursuing medical treatment or starting chemo. Why, she wonders? Why isn't her friend waging an all-out battle against her cancer? Why isn't she more aggressive in beginning chemotherapy? Why isn't beating cancer her priority?

In my heart, as a survivor of a terminal diagnosis, I can relate to her friend. I don't know what prognosis she was given. Maybe she is weighing the pros and cons of pursuing treatment. Maybe she's overwhelmed right now and needing to regroup. When I was diagnosed, every one sent me stories of those who had survived terminal diagnoses, who "beat" cancer, who won. They KNEW I would beat it; I just had to stay positive and fight. They didn't allow me any thoughts that I might not survive, though I was in the cancer community and surrounded by a multitude of patients who lost their battles in spite of the war they waged. While I wanted to fight and give myself the best odds, at the same time I also contemplated my husband's and children's future in case I didn't survive.

I knew my odds (15% chance of surviving 3 years), and though I planned on fighting and wanted to fight, I had to look at both sides. I needed to prepare to fight, but I also needed to prepare to die in case I lost my battle. The odds were against my "beating it", and I knew that. I had to work on coming to terms with both potential realities, surviving and succumbing....but no one wanted to know my thoughts about contemplating my own demise and preparing for that too. No one wanted to know about all of the books I read about death and dying, they weren't "positive". I had to pursue that in secret, but it was a potential reality important for me to contemplate and come to terms with. I needed to be ready for either outcome, surviving or not. Being prepared for either gave me a sense of control.

I know many appendix cancer patients who have been told further medical treatment will extend their lives but not cure them. So some choose not to aggressively pursue chemo and medical treatment...they prefer having less time, but quality time. It's a decision that needs to be respected. Those surrounding them don't understand that "giving up" mentality; I understand it fully, though. They were not "giving up" so much as they are giving to themselves what matters to them in the time they have left, taking control over what life they have left to live.

We live in a country and an era that pursues youth and wellness and longevity. We deny death vehemently; we don't think about it or talk about it. But death is a reality all of us will face eventually, though most in our society choose to not contemplate that promised destiny. A cancer diagnosis makes us confront our own mortality, though, and in many cases inspires us to create a back-up plan in case we don't have a good cancer outcome. We have to look at both sides of the coin. In a world where quantity matters and rules, we sometimes look for quality instead. It gives us peace to be prepared for whatever the future holds for us.

2 comments:

oldsgt said...

My wife and I were discussing Appendiceal Carcinoma this morning, wondering what progress had been made in the treatment of this dread cancer. You see our daughter was diagnosed with Appendiceal Carcinoma in late 2003 and faught it for almost a year before loosing the battle September 13, 2004 at the age of 50. Loosing a daughter is bad but to have to watch her suffer through such a terrible disease. I am thankful you are a survivor and pray you will continue to survive. I hope and pray for a cure for Appendiceal Carcinoma soon so that no more parents will have to go through something like this. God bless you and thank you for sharing your story.
Charles E. Williams oldsgt@roadrunner.com

Carolyn Langlie-Lesnik RN BSN said...

Dear Charles,

Thank you so much for your kind words.

I am so sorry you lost your daughter to this disease, I know many suffer greatly as they lose their battle. I'm sorry she suffered.

There is some research in progress, but as it is a rare cancer that affects only a small population, there is not a lot of funding for research. I hope to help change that, I also want to see a cure, I don't want to see anymore suffer with this cancer.

My heart goes out to you, I can't imagine losing a child, at any age...

Take care,
Carolyn