My message to friends and family on May 1st:
Today starts brain cancer awareness month and I can vividly remember reading an article about a cancer organization on the train into downtown DC in early April of 2011. I don't recall why it created enough interest for me to read the article about Steve Case, the founder of AOL, who had founded a charity in Washington DC dedicated to curing brain cancer (About Brain Cancer Cure- ABC2) due to his brother's untimely death of a glioblastoma multiforme(GBM). The article was about the charity and creating interest in a large 5K in downtown DC they sponsored to raise funds for research. I thought it may be fun to run the race, but I had no idea that within a short time, I would know more about GBM and every medical term/medication/procedure/clinical trial than the average medical doctor. Within 2 weeks, our lives were changed forever when Frank went to the urgent care clinic due to a sudden onset of headaches and ultimately was diagnosed with a GBM, an incurable primary form of brain cancer with an expected lifespan of around 17 months. Until that time for me, cancer was a disease that impacted other people, maybe older or unhealthy people and although you felt sympathy and sorrow for them, I could have never related to the magnitude of what the patient or the family endured on their cancer journey. Truthfully, all of our lives are filled with so many distractions and commitments, maybe it was just easier for me to think of it as a problem that others needed to deal with and just focus on my own personal endeavors.
Looking back seven years, I now understand that cancer not only impacts the patient, but the family and the community that surrounds them. Watching someone you love die is not an experience anyone can even begin to comprehend. Part of me believes if someone would have laid out what we would experience when we started this journey, I may have just curled up in a ball and hid from reality forever. The good news for us was the fighting spirit and endless hope in Frank, myself, our kids, our family and our friends was much bigger than the cancer itself and although, we experienced the unimaginable; we lived life, we laughed, we enjoyed family and friends, we collected feral cats outside our front door and we enjoyed every moment of a life cut way too short. I am so thankful for those surrounding us then and now and I know that I can't ever repay them, but hopefully I can give back to others in a way that helps the world go around in brighter and better way!
Above and Beyond Cancer is Des Moines based organization who is dedicated to elevating lives of those touched by cancer and creating a healthier world. I am so inspired by this dedicated group of individuals who advocate for cancer prevention and focus on mind, body and spirit to help those diagnosed with cancer and those surrounding them learn to live life to the fullest. For many, a cancer diagnosis is not the end, but just the beginning of finding their passion and their calling in life. I can only hope that Frank's journey did not end on January 15th 2013, but that I can live his legacy in many ways by being more compassionate to others, taking time to enjoy the little things in life, never taking myself too seriously, understanding that things really DO work out in the end whether you worry about them or not and more than anything providing support to those who need a helping hand without question or expectation of anything in return. I am a better person because Frank lived and I strive to be an even better person because he died.
On August 28th, I am embarking on a 3 week trip with cancer survivors, caregivers and doctors to Nepal and Tibet to participate in a medical mission and then hike to and around the most sacred mountain in the world, Mt Kailash. It is one small way I can help and support those on their cancer journey and also give back to the wonderful community of Des Moines, which is not my hometown, but welcomed our family with warmth, love and care both professionally and personally. I am fortunate to have the ability to fund my trip personally and plan to do that, but I thought for a small group of friends and family that were passionate about Frank's life, I would reach out and provide the following opportunities to participate:
1. Provide your address and I will forward you a prayer flag that you can personalize for Frank or any friend/family member who is on or has lost their battle with cancer. We will take the flags to Tibet and fly them over the mountains where it is believed that the winds will carry your prayers around the world. You will see a picture on my page below of Joe hanging prayer flags on his trek with Above and Beyond Cancer to Mt Kilimanjaro. Flags need to be back to me by mid-August to get packed up for the trek!
2. Make a tax-deductible donation to support my trek. No donation is too small and any funds I raise over the required amount will go to fund cancer survivors make the trek
3. Do 1 and 2 !
In the end, I am actually less concerned about raising money, but ensuring those who loved Frank understand that his life continues on in so many ways. If each of us are inspired to touch someone's life a little differently because of what we learned on the cancer journey that Frank endured, then his life continues to have meaning and relevance for those who never had a chance to know him!
Go Gray in May! F..k Brain Cancer! No one fights alone!
"Fight Like A Champion Today!"
Always in our thoughts, forever in our hearts- Frank Bott 1962-2013
The Trek to Tibet
I am thrilled to travel with cancer survivors, caregivers and doctors to Nepal to do medical mission work and then to Tibet to one of the most sacred mountains on Earth. Cancer care is not as readily available in many other countries and as I heard a very wise man say "where you live, should not determine if you live!" Here is a detail of my travels and the wonderful organization that has allowed me this honor!
August 28th-Sept 19th 2018
Mount Kailash is located in one of the most isolated places on earth. To access the circumambulation path, our group will fly halfway around the world to Kathmandu, Nepal. We’ll spend two days in Kathmandu, finalizing our paperwork for Tibet and touring the ancient city. We’ll take two flights over two days to reach Nepalgunj, a remote seldom visited village nestled deeply in the Himalaya. The next day, we’ll begin a weeklong trek across rugged mountains and gaining elevation. We’ll eventually cross the Nara Lagna Pass at more than 18,000 feet and gain access to the Tibetan Plateau. From the Tibetan border, we'll travel by four-wheel drive vehicle to the holy mountain, where we will walk the Kora. After completing the circumambulation, we will drive back to Kathmandu along the extraordinary "Friendship Highway"
Above + Beyond Cancer is a public charity whose mission is to reduce the burden of cancer across the globe. The organization pursues this mission through a team of internally developed “superadvocates” who leverage their creative talents as writers, filmmakers, musicians, lobbyists, fundraisers, and speakers to provide a uniquely engaging and inspirational approach to cancer advocacy. Our advocates create a public following through participation in a variety of adventurous, physical endeavors – including recent trips to Kilimanjaro, Peru, Imaja Tse, Everest, and an expedition to Mount Kailash. Upon returning from the field, our advocates work upcoming as lobbyists, speakers, writers, and fundraisers, who are driven to create a world with less cancer.