AACR Scientist<-> Survivor Program Post #1: Bullet Points

I’ve been attending the AACR Annual Meeting 2008 for the past two days, and it has been an amazing experience. I am learning so much. There’s too much to write here right now…I want to get up early tomorrow. I want to take advantage of everything this event has to offer while I’m here, so I’ll just bullet point some of the highlights for now.

  • As a medical professional I love learning what is new in medicine, and there is so much to learn here. There is more offered here than I could ever take advantage of. Several times I’ve wished I could be in two (or three) places at once.
  • I’ve attended lectures by scientists from MIT, MD Anderson, and John Hopkins today. I’ve learned so much. I didn’t realize how much I didn’t know about cancer. Cancer is an even bigger and smarter enemy than I knew it to be.
  • This event has been a beautiful visual representation of hope to me. I’ve seen thousands of scientists, some of the greatest minds in the world, all who have chosen to dedicate themselves to curing cancer. I’ve seen thousands of others here to learn and share what they’ve discovered. I’ve learned of research released only in the past 2 months, findings less than a year old. I see such dedication and commitment to finding a cure for cancer, so much passion, so many resources. I truly believe now that one day they will succeed in beating this terrible disease. How can they not? It’s inspiring and hopeful to see how many people care about curing cancer.
  • I’ve felt very valued as a survivor and advocate in the scientific community. I guess I expected such brilliant minds to look down at us, to just humor our questions, but they don’t. They treat us as colleagues. We are seen as an equal and integral part of the picture and part of the process in changing the world and in beating cancer. We can make a difference, we can help in the fight. That has been humbling….and motivating.
  • I’ve become passionate about funding for cancer research.
  • I’ve walked a lot, not slept much and have written pages and pages of notes. I have so much I want to learn more about after I get home.

    More later!

  • Made it!

    I am in San Diego,my flight was one of the few that wasn’t canceled so I made it out of O’Hare at the time originally scheduled. I had time this afternoon to take a trolley tour of the city to see most of it and to learn more about it’s history. San Diego is beautiful; the architecture is beautiful, the landscaping is beautiful, and the weather is beautiful. There’s a lot to see and do, and there are many cultural and historical venues. It is truly a nice change after this winter in Chicago….we were cold from November on. Snow began early December and it’s even supposed to snow in Chicago this weekend…..we are pushing five months of cold and gloom. San Diego is truly a breath of fresh air in comparison. I’m guessing they don’t get seasonal affective disorder here!

    The convention center where the American Association for Cancer Research’s Annual Meeting 2008 will be held is just a couple of blocks from my hotel. The convention center is huge, I think about 5 city blocks long. They told me to bring comfortable shoes, I’m understanding why now! I heard there will be over 20,000 scientists, researchers and doctors here from all over the world…..all people working to rid the world of cancer. I am very proud and honored to be in such company and to be in such a learning environment for the next 5 days. I know it will be an amazing experience and that I will learn a lot from some of the greatest minds involved in cancer research in the world. I registered for the event and got settled in this afternoon, the convention starts tomorrow.

    Up in the air….or not?

    My San Diego flight is up in the air…..or rather grounded at the moment, due to the American Airlines aircraft inspections. A friend emailed me to let me know of the problem, and my flight is involved. Just kind of a wait and see thing I guess, to find out if my flight will be reinstated by Friday or if someone can find me an alternative flight. My daughter thought it was great they were doing the safety checks before I got on the plane, I probably would have preferred it became an issue after I had landed…I’m okay with living dangerously nowadays! Here’s hoping they get it straightened out quickly! I’d hate to miss any of the San Diego event.

    Just a P.S., I’ve added a survivor section to my blog, check the sidebar on the left. I’ve added links to the stories of inspiring appendix cancer survivors who have reqested to be part of my site. If anyone else owns a site they’d like me to link there, let me know!

    Life ‘O Dennis

    I love being in the cancer community, but it gets tough sometimes. I get to cheer for those who are courageously fighting (and surviving) our cancer, but I am also sometimes in contact with those who lose our very tough battle.

    I’ve learned there is no fairness in cancer, especially appendix cancer. I know of a 15 year old, a 21 year old and a 24 year old diagnosed with our disease. People with long and bright futures ahead of them. Mothers of very young children, people newly wedded, people newly retired. All fighting this monsterous disease.

    I know of a few with appendix cancer who have never contacted me but who have linked their sites to my web page or blog. So, I check in on them now and then. I read their blogs or Caring Bridge sites. But I only rarely leave comments on their sites. I don’t want to intrude. But I love the comments to my blog, so maybe in my case it’s more laziness.

    One site I’d been reading was “Life ‘O Dennis“. Dennis Rich had been fighting appendiceal cancer for 4 years, he was most recently being treated in Chicago, so he was almost my neighbor. He’d kindly linked my blog to his some time ago. So in a way we kind of had a relationship, though we’d never communicated. He didn’t have an email listed on his blog, but I could have commented on his site, I guess. But I didn’t. I just decided to check his site to see how he was doing, I’ve done that for awhile.

    Dennis just lost his battle. I knew he was terminally ill, he knew it also. But I for some reason expected him to keep posting to his blog, even though I’d known he was terminally ill.

    Dennis was only 37 when he died. He had a PhD in physics, he was a musician, he was a devout Christian. He’d taught physics for two years in a college only a few hours from my home. He’d published this entry on his blog:

    “The battles ahead will be as much psychological as physical. Everything one lives for comes to the fore when faced with one’s mortality. Were the sacrifices of the life of faith worthwhile? For that matter, can I even boast in what little “sacrifices” I may have made? I trust in my God at this point, which is all we can do. He Who has proven able to turn the greatest of evils into the greatest of goods, can certainly turn my life into something of value. And even the end of my life.”

    Dennis also posted this on his blog, it is profound wisdom:

    God has created me to do him some definite service; he has committed some work to me which he has not committed to another. I have my mission; I may never know it in this life, but I shall be told it in the next. I have a part in a great work; I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good, I shall do his work; I shall be an angel of peace, a preacher of truth in my own place, while not intending it, if I do but keep his commandments and serve him in my calling.

    Therefore I will trust him. Whatever, wherever I am, I can never be thrown away. If I am in sickness, my sickness may serve him; in perplexity, my perplexity may serve him; if I am in sorrow, my sorrow may serve him. My sickness, or perplexity, or sorrow may be necessary causes of some great end, which is quite beyond us. He does nothing in vain; he may prolong my life, he may shorten it; he knows what he is about. He may take away my friends, he may throw me among strangers, he may make me feel desolate, make my spirits sink, hide the future from me — still he knows what he is about.

    John Henry Newman, Meditations and Devotions, III, 1855

    Dennis’ life was of value to many, I can tell from the comments on his blog. I was able to learn of his courage and his faith and his endurance as I read his blog. His life was of great value to me.

    I look forward to meeting him one day. And I so agree with Dennis, trusting in God is all we can do. That has been my greatest cancer lesson. I trust God without explanation, without understanding. I’ll learn the why’s later. I trust that someday it will all be made clear.

    Joy and peace, Dennis. I am glad for you that your battle is over.

    California here I come!

    I have been honored in that I was invited to attend the Annual Meeting of the American Association for Cancer Research as part of their Scientist<-->Survivor Program in San Diego, California this month. I was very grateful for the invitation.

    I will leave on April 11 and return to Chicago on the 16th. I will be meeting scientists involved in cancer research along with other survivor advocates from all over the country. I will be able to learn what is currently in the forefront of cancer research.

    I am not exactly sure what to expect as I have never attended an event like this before, but I have received an itinerary that has a pretty packed schedule of events, meetings and opportunities that I will participate in while there. I’m sure it will be the experience of a lifetime. I have been assigned a mentor and two cancer scientists. I will also be privileged to meet Dr. Andrew Lowy, one of the renowned HIPEC specialists, while there. I have recently been working on a poster about my advocacy efforts that I will present there.

    I hope to post to this blog if I can while I am attending, I believe my hotel has wireless access and I will bring my laptop. I want to let you all know what I learn there.

    This event will also mark the unveiling of a non-profit organization I have recently founded, the Abdominal Cancer Connection. My organization is in it’s infancy and was granted 501(c)3 status by the Federal government just this week. I have chosen a small board of directors, they are wonderful people who are very supportive of me and my cancer advocacy. I hope to have my first board meeting soon. I am also in the process of putting together a medical advisory board. I will construct an organizational web site in the near future as I obtain initial funding.

    My organization will provide education and support to those diagnosed with advanced abdominal cancers (peritoneal surface malignancies) originating from the appendix, but also from abdominal sites such as the colon, stomach, small bowel and pancreas in addition to primary peritoneal cancer.

    All of us diagnosed with these cancers are candidates for some of the same treatments provided at some of the same hospitals by some of the same specialists. We all face the same obstacles and issues associated with diagnosis and treatment including understanding the disease and available treatment options,accessing medical and surgical treatments, travel and housing related treatment needs, insurance issues, dealing with post-op physical, emotional,and nutritional issues, caregiver support and childcare issues…the list of obstacles we all face is huge.

    I want my organizations to be able to offer education and support to all of those diagnosed with advanced abdominal cancers as they deal with all of these obstacles. Hopefully in the end the organization will also be able to fund research into these cancers.

    I’ve been in the abdominal cancer community for a long time and see the needs daily. I want my survival to make a difference to others struggling with these cancers. I hope my non-profit will be the avenue that allows me to make a difference and to support others newly journeying on this very difficult road.