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.

Friday, October 24, 2008

Announcement

In my post of October 10th, I said I was going to talk about my latest advocacy venture. Here goes!

After publishing my web site, I became involved with many diagnosed with appendix cancer who emailed me after discovering my site. I've also communicated with those who have abdominal cancers of origins besides appendiceal cancer and who often seek the same treatments from the same specialists. They deal with all of the same issues those of us diagnosed with appendix cancer deal with. Except for cancer origin, all of our issues are the same. We all have "peritoneal surface malignancies", or advanced abdominal cancers.

My email communications now number in the thousands (I REALLY need to learn to type!). I've used hundreds of cell minutes talking to the newly diagnosed, and I now use Skype to communicate with some internationally. I've communicated with patients from all over the United States and all over the world including people from Norway, Ireland, the United Kingdom, Canada, Mexico, New Zealand, Asia and even the Aland Islands (had never hear of them, they are islands off of the coast of Finland). The Internet is amazing in the ability it gives us to reach into distant lands. In my quest for up-to-date information I've also communicated with many of the elite surgical oncologists who treat these cancers. I've been amazed at how generous they have been with their time and resources.

Sometimes all of these activities, in addition to maintaining my blog and site, have taken about 20-30 hours a week of my time. I have never minded that use of my time; I am blessed to be able to use my life in that way. Before and after my cancer diagnosis, I had struggled with a need to find meaning and purpose in my life; I feel I've found my purpose now in the cancer community.

I met a new friend through my involvement with the American Cancer Society, turns out she is a business consultant in her real life. She knew the work I did, and suggested I might turn my passion into my profession. At the same time, the husband of another patient who was a business entrepreneur and who lived across the country (and who didn't know anything of the other conversation) suggested the same and introduced me to the founder of a cancer non-profit nearby in Chicago. Another woman found my web site and said I reminded her of someone who had started out just like I had as a patient advocate and had gone on to found the Kidney Cancer Association that now serves thousands diagnosed with kidney cancer. I was suddenly all at once inundated with that suggestion through many unrelated sources. It was almost spooky. My daughter said "Mom, do you think God is trying to tell you something?".

The idea of a business venture and social entrepreneurship was totally out of my realm of experience and knowledge, but I started to consider it. And all of the sudden I was given resources to help me achieve that end. The business friend introduced me to the Entrepreneur Center at a local college and to people who were successful social entrepreneurs. The entrepreneur center suggested I take a business class for entrepreneurs that was just starting and still accepting students. From that point on, doors have amazingly opened one after another in ways I never would have expected or anticipated. I love the saying "God doesn't call the equipped, he equips the call". I suddenly was being equipped in an overwhelming way.

In the end I founded a non-profit organization, the Abdominal Cancer Connection. It's a project that's been my passion for about a year now. I actually have a board of directors and am chairman of a board! We recently had our first meeting. The woman I met through the American Cancer Society has supported me and helped me unendingly. An accountant with non-profit experience has donated time to helping me and agreed to be on my board. An attorney I met and just love helped me at a discounted rate file the paperwork to become 501c3, my organization is now officially a tax exempt charity. So far two renowned HIPEC surgeons have agreed to be on my advisory board, there are several others I want to approach. The American Association of Cancer Research allowed me to unveil my non-profit as part of their Scientist Survivor Program at their annual meeting in San Diego this year. It's been an amazing ride.

My latest hurdle in developing my organization has been to develop a web site and web presence. I got some estimates....$2000-3000 for professional design of the site I wanted, and those quotes were the discounted rates for non-profits. Though I've donated a few thousand dollars in setting up the organization and have received help from family and friends, I was unable to afford professional help for web site design. I have one daughter who just started college and another starting next year, so that's where my personal financial resources are going now. I constructed my own initial web site, but what I need for the organizational web site is beyond my ability.

I tried calling local universities to ask that maybe my site could be taken on as a class project, or asked if a student might be willing to donate their time, but without response. I made several calls looking for someone who might donate their time, no response. Then I received an email recently from a professional web site designer and software consultant, he had been the person I'd most wanted to do my web site back when I was obtaining quotes. His father had just been diagnosed with cancer so he contacted me about his dad. He knew from past communication with me that I was developing an organization and hoped to have a web site professionally done at some later date. In our communication he said he'd looked at my site and noticed I hadn't updated it yet to represent my organization. Did I need a web designer? If I did, he'd do my site for me for free. Wow, another door opened. We met to discuss the site this week. He also has a connection to a graphic designer who can help us. We set an official launch date for the web site as February. Amazing.

I'm sorry about the length of this post. I have a lot more to say about the organization and will post more about it in upcoming posts. Stay with me!

Tuesday, October 14, 2008

Gift From the Sea


I just returned from a week by myself at the ocean. I got the idea from my best friend who has done the same many times. She was my travel agent! I've always had a need for occasional solitude to "recharge", and a week of watching sunrises and sunsets on the ocean was perfect. Great time to go also as there were very few tourists and lodging rates were half price.

A friend was at my house last night and she said my trip was "So Anne Morrow Lindbergh!". I smiled and showed her the book she was referring to, the inscribed book my daughter gave me as a gift before I left "Gift From the Sea". The book was written by Anne Morrow Lindbergh (of the Lindbergh kidnapping)about the need for women to carve out time for solitude. Anne took an annual week for herself by the sea too when she was raising her five children. I've since learned the book is a favorite of many women.

A quote from the book is "...I want first of all...to be at peace with myself. I want a singleness of eye, a purity of intention, a central core to my life that will enable me to carry out these obligations and activities as well as I can....I would like to achieve a state of inner spiritual grace from which I could function and give as I was meant to in the eye of God..."



My husband and I and our two daughters almost always do an annual family vacation. I truly value the uninterrupted family time, just the four of us. But I think I might do as Anne now and also take a solo trip to the sea every year...I'm sure it will make me a better wife, mother, nurse and cancer advocate. Several friends have told me my trip was a good example for my daughters...maybe it will give them permission to take care of themselves someday when they are adults raising families. Maybe men figured this out awhile ago and it's why many do annual wilderness hunting and fishing retreats? My mother-in-law said she wishes she had done a trip like mine when she was raising her kids, she said it was a great idea.

I did go out twice on chartered boats, once to Shell Island (if I go back I may take a tent and stay on the undeveloped island for a few days) and deep sea fishing for several hours (I love to fish and haven't in about a decade). I also walked about 20 miles and spent a day at a state park reading Anne's book.

I was very blessed to be able to take the trip. I slept every night with an ocean breeze over my bed listening to waves. Heavenly.... I truly came back recharged.

My next post will be what I want to tell about my latest advocacy venture!

Friday, October 10, 2008

Since then.....

Since publishing my web site and blog, many doors into cancer advocacy have opened for me and I've met many wonderful people. I've since communicated with over 500 people who have been diagnosed with and who are battling appendix cancer.

Since making the decision to publish my web site and to remain in the cancer community these things have happened in my life:

My cancer story was on the front page of our local newspaper on Easter Sunday last year.

My blog was discovered by an editor and was featured in the Cancer Blog section of CR Magazine.

My daughter's senior class used my story for a chapter in a book they wrote "Heroes Among Us". She and her teenage friends also helped make thousands of appendix cancer ribbons that we've distributed via my web site.

I was asked by a woman who found my web site to participate in Medpedia, an online medical encyclopedia currently under construction.

My blog was discovered by Dr. Geoffrey Rutledge MD, PhD and I was asked to participate in Wellsphere as a healthcare blogger in their new online medical community.

A kidney cancer survivor found my web site. It turned out she is heavily involved in cancer advocacy at the state level in Indiana. She was part of the Scientist Survivor Program through the American Association of Cancer Research and encouraged me to apply to participate in the program. I applied, was accepted and was privileged to attend the annual meeting of the American Association for Cancer Research in San Diego this year, where I learned much from cancer research scientists and other cancer advocates from all over the world. I will attend another AACR Meeting in Washington DC next month. Being involved with the AACR Scientist-Survivor program has expanded my world and advocacy efforts in many ways.

My involvement in the Scientist Survivor Program has lead me to become involved with the legislative process as it affects cancer via my local Cancer Action Network as a Legislative Ambassador.

I was recently nominated as an innovator for my work in cancer advocacy and was chosen to become one of the select members of The Society of Innovators of the Gerald I. Lamkin Innovation & Entrepreneurship Center in Northwest Indiana. I will be inducted at an event next week, it is truly a great honor.

I have received thousands of emails from cancer patients who have benefited from my web site and blog. I recently received an email with this link to a news article about a woman who had planned her funeral before discovering my web site Exclusive: Dying with cancer, then I found a cure on the Internet. Dawn wrote me after the article weas published. Stories like that give purpose to my cancer experience and survival, they are truly gifts. I cherish them. I know I am truly blessed.

My work in cancer advocacy since my own diagnosis and survival has helped me grow and given purpose and meaning to my life. I have been very honored by the people I've met and the opportunities I've been given.

All of this happened after I made the one scary decision to try to construct a web site, something that was so out of my league in every way just a couple of years ago.
I would have never guessed then it would have led me to where my life is now.

Everything I've talked about here has led me to one more venture, my greatest venture, in cancer advocacy. It's bigger and more intimidating than creating my web site. I will talk about that venture in my next post.