Health | Mesothelioma | Cancer » Appendiceal Cancer

All or nothing?

admin — Thu, 22 Jul 2010 18:48:55 +0000

It’s interesting. Since my own diagnosis, my view of cancer and cancer treatment has changed. I think many of us have thought of cancer as an “all or nothing” disease for a long time. We are either cured or we aren’t. We survive or we don’t survive. Our cancer is either gone or it’s there. The only good outcome is that our cancer is gone and we move on with our lives intact cancer-free.

We feel having cancer means we are on a path to death, and having no detectable cancer means we might have a chance of staying alive. All or nothing.

But I met a woman when I was in chemo who had been receiving chemo weekly for 4 years. She was not cured and she was not dying. She had a tumor that could not be removed surgically, but the tumor had not grown or spread or threatened her life in 4 years. She tolerated chemo well, and aside from living 4 hours of her life weekly in the oncology chemo room, her life was pretty much normal.

I’ve since been in contact with 2 long term appendiceal cancer patients who have never really been cancer free. They have been eight years and twenty years with appendix cancer recurrences. And in the meantime, between treatment, they have valiantly lived their lives. Productive lives. Meaningful lives. Lives that aren’t just about cancer. They have survived in spite of cancer. Raised kids, pursued careers, lived lives…with appendix cancer.

I got to thinking about that. I was in chemo for about 4 hours once a week for many months after I was diagnosed. Not bad, but not how I would have chosen to use my time under other circumstances. But I’m a nurse. For years I’ve seen dialysis patients. Patients who live their lives hooked up to dialysis IV pumps for as long as we are hooked up to chemo pumps….but three days a week…for years. And they live long and productive lives in spite of that. Their lives are altered, but they still live. They still contemplate a future; they tolerate dialysis as they await a possible transplant and a new normal life.

I have now been exposed to many scientists involved in cancer research. They are so close to so many breakthroughs. There may come a day in our lifetime when there is a cancer cure…if we just wait and stay in treatment. Just like dialysis patients remain in treatment while they await a kidney transplant. The day when they can live without being in treatment.

That day that may come for us. The day cancer is defeated.

I want to be here to celebrate that day.

When is it Over?

admin — Sun, 18 Jul 2010 17:03:05 +0000

When is it over? I remember having that thought often. I was so psyched to “beat it”, to survive my cancer. When could you officially declare that you’d won the battle and relax? I had always assumed the 5 year mark was the definition of “cured” in the cancer world. Everyone talked about 5 year survival rates like they were the gold standard. If you made if five years weren’t you cured and couldn’t you stop the testing– the CT scans, the x-rays, the tumor markers? Wasn’t the very long and hard battle finally won if you were cancer-free at 5 years?

Then I remember reading somewhere that the term “cure” was no longer used, we were in “long term remission” if we made it to the five year mark. I’d always felt remission to mean you still had cancer, it just wasn’t currently active. We would always in some sense be “cancer patients”. I read an article written by a cancer patient who’d read “long term remission” at 5 years vs. “cure” in a magazine in a doctor’s office. When she’d read that statement, she’d thrown the magazine across the room. I could so relate to how she felt. We want the “cure” word, the guarantee it will never come back, the permission to go back to our normal, before cancer lives. To put it all behind us. But some of the appendiceal cancer specialists feel we should have yearly CT scans for life. For life. Forever. We can never stop being vigilant.

I read a statement by a cancer survivor recently. She said we are like recovered alcoholics, in a sense. And we are. We are no longer actively in cancer treatment, and we may no longer have detectable cancer, but it’s never really over. We will always be on guard, we will always be vigilant. We are all now acutely aware of how rapidly our lives can change, how much we can lose in a very short time. We can’t go back to before cancer when we were more naive, just as a recovered alcoholic can never go back to the days before his first drink. But somewhere between the diagnosis and the recovery we aquire new skills, we deepen our character, we develop new perspectives. We become equipped to help someone else just beginning the journey. Being able to do that kind of makes it all worthwhile.

Thank You CR Magazine!

admin — Sat, 17 Jul 2010 23:23:21 +0000

I am deeply grateful to CR Magazine, a publication of the American Association for Cancer Research, for an article just released in their 2009 fall edition, Fairest of All, about Audrey Hepburn’s struggle with appendiceal cancer. Audrey Hepburn lost her battle with the disease in 1993.

The article honored Audrey Hepburn’s life, but also did so much to promote awareness of appendiceal cancer and the newer treatments available. I was honored to be interviewed for the article a few months ago; a bit of my story is included.

Appendiceal cancer is an orphan disease, many of us newly diagnosed learn for the first time that the disease even exists, that an appendix can become cancerous. Most physicians have seen few if any cases in their lifetime. Those of us who seek treatment from a specialist often have to travel great distances.

Our disease is rare, so receives little media attention and few research dollars. Just this week I was asked if there is an appendix cancer awareness month…to my knowledge there is not. But there should be.

The CR Magazine article is free, it is available on-line even without a subscription to the magazine. The article has also been posted on the American Association for Cancer Research’s home page “In the Spotlight”.

I hope the article is widely read. Again, I am very grateful to CR Magazine for drawing attention to our battle and for promoting awareness about our disease. They did us a great service.

Thanksgiving

admin — Thu, 08 Jul 2010 16:20:37 +0000

I guess I should have posted this when it was the holiday, but I worked the holiday and weekend so didn’t think of posting then. I also went to see the Chicago Symphony Orchestra directed by John Williams with my daughter followed by a night in a Chicago hotel after the holiday, so it wasn’t all work, it was also some play that delayed this post!

I am thankful for so many things. I’m thankful for the family times I am able to share with my husband and kids. I’m thankful I am here to watch my kids grow up. I am thankful for my health. I am very, very thankful to be an almost 7 year survivor of what some call “the kiss of death”, signet ring appendiceal cancer.

But what I am especially grateful for is the opportunity and purpose my survival has offered me. I struggled as a survivor for a long time not so much with survivor guilt as with an obsessive need to find purpose in my survial. I drove my best friend and a few others nuts when I incessantly talked about needing to find purpose in my life.

When I finally made the decision to muddle through creating a web site, I never knew, I never thought for a moment of the gifts I would be given in return, the people I would meet as a result. I never anticipated the purpose I would realize as a result of my having had cancer. So many of you who have contacted me have inspired me greatly and given my life a new meaning. I’m sure this sounds strange to some, but I wouldn’t go back to my before cancer life if I could now. My life is so much richer now than it was before cancer.

I thank all of you I’ve met while on this journey, you’ve all enriched my life and given meaning to what was once a very tough journey.

Health | Mesothelioma | Cancer » Appendiceal Cancer

All or nothing?

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