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, April 23, 2010

Back Home!

I am just back from my trip to Washington DC. It was wonderful. I arrived on Friday night and walked several miles in DC on Saturday. I walked to the National Mall and to the Smithsonian Aerospace Museum, the most visited museum in the world. I took a tour highlighting the Apollo space missions and watched an IMAX presentation about the Hubble telescope...I love seeing pictures from the Hubble on-line. Saturday evening I went to meet the family of a patient with appendix cancer I helped four years ago, she is still cancer free and doing great, we talked until almost midnight, I think she will always be a friend!

On Sunday I attended a church service at the National Community Church, then had lunch with Dr. Esquivel at Union Station, it was a great lunch...I admired him before but do even more so now. I am on the board of his new organization, the American Society for Peritoneal Surface Malignancies, so it was a working lunch.

I spent Monday in the PEW headquarters and met so many great people: breast cancer and lymphoma survivors, a 16 year HIV survivor, and a terrific ER physician who is a heart transplant recipient. I also met an ethnobotanist ( Paul Alan Cox) I truly admired; I ordered his book Nafanua: Saving the Samoan Rain Forest. All were people, like myself, who had benefited from drugs derived from nature (except the ethnobotanist, who has helped develop drugs from natural sources). I had some time left over on Monday so did a bus tour of DC...mostly because I love hearing about DC trivia. For example, Washington has an exact replica of the Liberty Bell, but twice the size...in Washington it is called the Freedom Bell. So interesting, the original liberty bell is engraved with the word "Pennsylvania", but it is misspelled (one n and not two)...so to make it an exact replica, the word is also misspelled on the Freedom Bell. There's lots of fun DC trivia.

Tuesday and Wednesday I was on Capitol Hill to help promote the Global Conservation Act, which will help our nation coordinate efforts worldwide to preserve nature and nature's pharmacy. I met with a representative who worked as a police officer for 33 years before entering politics, and who wrote a book about his capture of a serial killer, Chasing the Devil. All of the proceeds from the book go to helping kids born to crack and heroin addicted mothers; I ordered the book the day I met him. I learned of politicians who are truly caring and who truly want to make a difference. Many support efforts to conserve nature. It changed my view of politics and politicians. There are many good people on Capitol Hill who serve us well.

Thursday I had a "free day", and after walking almost 10 miles to sight-see during the week, I decided to just curl up with a book in my hotel room, though I did visit Lafayette Park. Then I spent the rest of the day traveling...to Reagan airport, then to O’Hare, then the bus ride to Indiana, then the 45 minute drive home from the bus stop. Amazing that it's only a two hour flight to DC, but the travel in the end takes the better part of a day (plane was late, of course).

So though I love DC and loved my experience there, I'm glad to be home! But I have lots of good memories and learned so much...and met several people I hope to stay in touch with!

Tuesday, April 13, 2010

New Survivor Story!

Enough about me...I want you to read Daniel's Story, he sent it to me just today and I wanted to post it right away, so it is already posted in the "Survivor Story" section of my web site and blog. Daniel was diagnosed with extensive disease at Stage IV and was initially told he had 12-18 months to live. He is an almost 10 year survivor now. I loved his "Ham Causes Cancer". In my house "Egg Nog Causes Cancer"! I had my first cancer symptoms after drinking egg nog I assumed was bad, to date my kids no longer drink egg nog as they associate it with cancer. Ham was the beginning of his journey, egg nog the beginning of mine. Fun trivia!

I would like to thank Daniel for giving hope to so many, he, and the other survivors in my "Survivor" section are my heroes. I am so grateful to those who are willing to share their stories.

It was interesting to me that both of my recent survivors have talked about the fact that we never really feel "safe" again after a cancer diagnosis, I am the same even at 8 years cancer-free. We forever after live with a sense of uncertainty...goes with the territory.

While it is a difficult way to live, it does have some benefits. I know I now prioritize better; lots of "before cancer" things don't make the cut in my world now, I live much more purposefully, I think. And that's a good thing!

Washington DC

I will be leaving this Friday for Washington DC. I will be there almost a week. I will be working on Capitol Hill Monday thru Thursday to help promote the Global Conservation Act. I am involved in an arm to preserve natural resources for the health benefits we derive from nature. Seventy percent of all cancer drugs have their origin in natural sources. Thirty percent of current cancer therapies are derived from rain forest plants...and only 1% of rain forest plants have been tested to date to see if they might benefit us. Without conservation, rain forests may be forever gone from our earth in 40 years. I myself was treated with a drug derived from the bark of an Asian tree. I am passionate about conserving our resources, so feel privileged to be offered this opportunity to make a difference.

I am leaving a few days early, as I hope to connect with a mother in DC I helped find treatment for appendiceal cancer several years ago and who is now a cancer-free survivor. I plan to meet with her and her family on Saturday. On Sunday I plan to meet with one of the nation's renowned appendix cancer specialists. I also hope to attend a church service in DC on Sunday. I've read several of Mark Batterson's books and LOVE the way he thinks. He is the lead pastor of the National Community Church in Washington DC. His church service (held in a former crack house turned coffee house, yeah!) is only blocks from where I am to meet the specialist. The church service is at 10AM, I am to meet the specialist at noon...so should work out! I have one day free until 6PM, so hope to visit one of the Smithsonium Museums...or the Spy Museum or the Aeronautical Museum. So much to do and so little time.... Slim possibility I will participate in a TV interview on Thursday, Earth Day. Wish me luck with all of that! I'm a tad nervous.

I am excited to go to DC again. Funny thing, I went there for a cancer conference a few years ago, and was disappiointed the conference was in DC. I've never been interested in history or politics. I'd never wanted to go to DC. But in the end I fell in love with our nation's capitol. I saw the Washington Monument, the Vietnam Memorial, the Lincoln Memorial. I learned of lots of interesting trivia about our nation's Capitol. I fell in love with their subway system. I loved the Reagan Airport. Like Chicago that I frequent regularly, Washington has it's own personality, it's own character.

So I am excited to again be visiting DC. I'm trying to talk my kids into a family vacation to DC one day. They have the attitude I once did...DC doesn't sound very interesting to them. I want to change their opinion of our nation's capitol.

I hope to write from DC, but if I am not able to, I will write when I get back!

Friday, April 9, 2010

Cool Things!

Last night I attended an event for the Northwest Indiana Society of Innovators. I was nominated and accepted for membership the past two years by one of my board members, so I get to be part of that elite group of people. Last night was their first Pride and Pedestal event.

The Pride and Pedestal event offered presentations by ten selected members in a five county area; it was amazing. One invented a digital video camera for use in medical and biological research that is now used by Harvard and John Hopkins and many renowned facilities nationally and internationally. Another man, now a multimillionaire, invented a solar powered attic fan. Two physicians were there, they were honored for starting a three hospital program that offers same-day mammogram and breast biopsy results (I thanked them on behalf of cancer patients everywhere who are immobilized with anxiety while awaiting test results) I told them of our own "scanxiety". I asked if they would someday strive to offer same-day CT results? They actually are hoping to offer that down the road.

The coolest thing was that I was asked to be one of the 10 presenters next year for my work with appendix cancer patients. What is great about that is that it will help more people become aware of appendix cancer and treatments now available through specialists. The public and the medical community need to know more about our disease so that patients can be properly treated when they are initially diagnosed. I talk to so many who finally see specialists familiar with our disease only after multiple surgeries and prolonged treatment, and then only when their disease has recurred. I talk to many who are initially misdiagnosed (one woman was treated for 5 years for ovarian cancer before she was correctly diagnosed with appendix cancer). I think public awareness is something we really need. Maybe I can help that happen!

Tuesday, April 6, 2010

The Empowerment of Hope

When I was diagnosed with cancer, I so looked for hopeful things. I wanted to know of other cancer survivors who had defied their odds. I wanted to read survivor stories, but not of breast cancer survivors…those stories seemed a dime a dozen. Their cancer was different; it had an 80-90% survival rate. My particular cancer had an only 10% 3 year survival rate. I wanted stories from those who had survived my long odds, and they were few and far between.

I initially wanted the illusive 5 year survival, which used to coincide with the word “cure”, forever done with cancer and oncology appointments and testing. Then I learned that they don’t use the “cure” word anymore, we are only “in remission” at 5 years. At eight years I still see an oncologist, I guess I will forever be a “cancer patient”, my oncology visits won’t ever be over and done. Over time I learned of survivors who had recurrences after the five year mark; that broke my heart, both for them and for me. Would I ever feel safe again, would it ever be over? It seemed not. When I started to feel a little bit safe as an 8 year cancer survivor of my aggressive pathology (was I finally cured?), I was contacted by another 8 year survivor of my particular pathology, which often kills in 2-3 years, who had been cancer free for 8 years also. Then at eight years she had a recurrence of our cancer. Maybe I wasn’t safe even after 8 years?

Funny thing after I was diagnosed, I couldn’t make an appointment for a 6 month dental cleaning. I couldn’t say the words “next year”. I was afraid to buy anything for myself, clothes included, as I had always been frugal and felt myself to be a bad investment. I made no future career plans, vacation plans, I invested nothing in retirement. I felt my future was too uncertain to bank on a “tomorrow”. And part of me felt like assuming a future might jinx me, might even bring on a recurrence?

In the end, I lived long enough (and my weight fluctuated enough) that I needed something new to wear. I bought new clothes. I made tentative future plans, though I still don’t contemplate retirement. I was finally able to commit to a semester of school. That led to a plan to commit to two more years of school, to obtaining two new college degrees. I am contemplating a new career path. I might be assuming too much, but what the heck, I’ll take the risk. Planning for a future, even an uncertain one, is hopeful. And living with hope is a good way to live. Since I started school, I have suddenly felt empowered to contemplate a future. I’ve since painted almost all of the rooms in my house, am remodeling rooms (to enjoy in the future). Maybe we need to take steps towards a future even if it is hard, even if our future seems uncertain?

A woman who read one of my recent posts said she finally bought a camera she wanted but hadn’t purchased earlier as she though in her uncertainty it might be a waste of money. But the purchase in the end gave her a sense of hope.

In hindsight, I’m wondering if assuming a future in light of uncertainty is a good thing to do. If assuming a future might help to make it a kind of self-fulfilling prophesy? Maybe we need to indulge ourselves in hope for a future even when our future is threatened? I think in the end, in a sort of holistic way, it is healthful.