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, April 20, 2009

AACR Annual Meeting Day #3

I'm sorry I have not been able to keep up with this blog daily throughout the conference. We advocates are truly busy here....I attended I think 8 scientific presentations yesterday, then we had an event in the evening, so my day from about 7AM to 10PM was accounted for. I needed to get up early again this morning for another long day (and will again tomorrow morning) so haven't had time to blog much. But I will be back with updates about what we've learned here as soon as I can.

It's interesting, most of the advocates I meet here are strangers from all over the country, but our cancer and advocacy experiences bond us. We communicate easily with each other and feel an almost instant friendship. I ate dinner last night with three advocates from other parts of the country who were strangers to me the day before. We had a great time and had no trouble finding things to talk about.

We were talking again today. Cancer changed our lives. And our lives never returned to our previous before-cancer normal once we finished cancer treatment and became "survivors". We are all long term survivors doing purposeful and good things with our cancer experience, but we agreed that if we could go back to our old before-cancer lives and perspectives, when we weren't survivors and advocates, we would.

In a minute.

If we could, we'd in a minute go back to the lives we had before that had not yet been corrupted by cancer, by cancer testing, by uncertainty and by loss.

We all still miss the old before-cancer days, when we didn't feel so vulnerable, when we didn't live in a world that witnessed so much hurt and struggle, when we didn't so often lose other survivors we'd developed friendships with, when we didn't have to constantly be tested to find out if we could continue to expect to survive. Life even after cancer, as a survivor, is tough.

But the whole point of this conference is cancer research, learning how we can one day help make cancer disappear from the face of the earth. Hoping for a day when no one has to contemplate their lives before and after cancer.

Our grand hope; cancer cured and a thing of the past. A time when there are no more cancer survivors because there are no more cancer victims.


Melinda in Texas said...

I was diagnosed with PMP in 2006. After debulking surgery, no further evidence of disease has been found. The pathology reports from my initial surgery showed no cells or implants of the disease, although there was a great amount of mucin. The doctors are saying that, having made it over 2 years clear, my chances are very good of being one of the 12% who never have a recurrence. I'd like to offer the encouragement that this is possible, but fear that if I begin a dialog, people will question my choice to proceed watchfully but stop acting like a cancer patient. Just know that, unlike the study I found when initially diagnosed, it seems that this disease is not "always fatal."
I had to smile, however, when I read your figures about the statistics since 1950 or 60 or whatever, because actually 100% of us will die, cancer or other causes, but I refer you to your Easter message on that one...

Carolyn Langlie-Lesnik RN BSN said...

Thanks so much, Linda, for your comment. This disease is fraught with recurrence in the majority, but yes, it is possible to survive the least for awhile. We can have more time, we may even contemplate "cure".

But in the end we are all still terminal. And in the end, Easter has become my greatest hope, the ultimate end of all disease, the ultimate survival. That is my greatest hope...the end of all cancer and all disease and all infirmity, forever.