Fight Colorectal Cancer Call on Congress Video – WA/DC March 2012

I felt goosebumps up and down my arms when I watched this wonderful video about the 2012 Fight Colorectal Cancer Call on Congress.  Liz and I were interviewed and are embedded in the video.  Feel the energy of this group as they spend a day making a difference. Everyone you see in this video, wearing a Fight CRC T-shirt, is either a survivor, caregiver, spouse, sponsor, ambassador for the Fight CRC cause.  Enjoy

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Call on Congress 2012 – Wrap Up

Our day on Capitol Hill wrapped up with a celebration dinner. Sore feet and exhaustion did not keep us from dancing the night away. And sharing stories about our visits with our state representatives in the House and Senate.  We went to the Hill to ask for help and to bring more awareness about the fact that colon cancer is the second leading cancer killer in the United States.  My hope is that the discussions we had with representatives (staffers) of Arizona’s political leaders made an impact – that seeds were planted in the soil of their souls.

Conversations about colorectal cancer can be tough to initiate. Who wants to talk about their colons or bowel disorders? These are topics that we traditionally keep to ourselves, preferably behind closed bathroom doors. But this discomfort often leads to late diagnosis of colon cancer. Early detection and treatment saves lives! I’ve joined the Fight Colorectal Cancer cause – as a tribute to my daughter Elizabeth’s cancer journey, and because I can! Each day I learn about ways to link to others whose personal experience with colon cancer has changed their lives forever.  At dinner last Wednesday night I sat next to Michael Sapienza, Chairman of the Chris4Life Colon Cancer Foundation (  He told me about his mother’s journey to the end of her life.  How he could never imagine life without his her. I thought about the many times my son Tom, and I have said to one another, “I can’t imagine my life without you in it – every day in every way.” Michael’s story touched my heart.

I’ll close this blog with my daughter’s interview in WA/DC – Liz Dennis, a survivor of stage III colorectal cancer, traveled to Washington, DC, from Arizona to share her personal story about colorectal cancer, and to ask her lawmakers to commit to funding for screening programs and research so that fewer people have the same experience. “I never want to go through that battle again,” she said. “And I have lost too many friends to this disease. I am here because I am determined to see a cure for colorectal cancer in my lifetime.”

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Ready to Go – Call on Congress March 6, 2012

Liz and I attended all-day training and preparation for tomorrow’s journey to Capitol Hill.  We have appointments with three Arizona representatives – Senator Jon Kyle, Representative David Schweikert, and Senator John McCain.  I know more colon cancer facts than I ever imagined I could – policy issues, the Affordable Care Act’s impact on colorectal screening, funding programs, and research. But I think the one thing that will make the greatest impact tomorrow will be the stories colon cancer survivors share . . . .

I feel tender tonight. I have heard so many stories – survivors and caregivers.  Parents and loved ones. Loss and healing. This group comes together to make a difference. And perhaps because, in the midst of all these stories, they find community and a sense of belonging. Others who understand. But when I heard the story tonight of Courtney’s too-soon-death, I could hardly breathe. Eighteen years old. Mom, we have to let people know about this . . . . she said to her mother just before colon cancer took her life.

Gratitude – I end this day with gratitude.  Life is good. I am letting you all know this!  Life is good.

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Hope – Call On Congress March 5, 2012

When I was in Kenya this past January, I commissioned a woman named Elizabeth to design and make these bracelets using blue beads – the designated color of colon cancer.  Elizabeth in Africa supports her family with the revenue from her bead projects.  How far I have come is because of you . . . she said to me the day I placed the order.  I knew she referred to the collective “you” – all the people who purchase the treasures she creates.  Last night my daughter Elizabeth, presented some of the bracelets to people who have walked her cancer journey – those who have walked so long and so far with/for her!

Today we slept in, had breakfast in our room, walked across Key Bridge into Georgetown where we ate soup with locals, then hopped into a taxi cab to escape the surprise snowfall.  Tonight we gathered with advocates from all over the United States who came to WA/DC to fight colorectal cancer.  I sat next to Michael Paul. His name badge had three ribbons attached – light blue “past attendee”, green “caregiver”, and another light blue ribbon “family survivor.”  I asked him about the meaning of the later.  He explained that his wife died last year – 28 years old. Stage four colorectal cancer. Diagnosed when she was 26. They had been sweethearts for five years when he asked her to marry him.  Erica told him she would “let him off the hook” after her diagnosis. That was the farthest thing from his mind. She was the love of his life; he would never leave her no matter what. A year later they married. The next year she died. Now Michael devotes his time and energy to raise funds for people with colorectal cancer.

Michael’s ideas about how to use the money he raises resonated with me.  Simple things like getting the house cleaned for a cancer patient; perhaps a pedicure, manicure, or massage. Erica loved to purchase a new outfit when she traveled to Sloane Kettering Cancer Center in NYC. Perhaps a new pair of shoes. I thought about all the little things I knew brought joy to my daughter Elizabeth during the horrific days of her cancer treatment.  Michael said that team would soon be up and running. Erica would be happy to know all Michael does in her memory – now that she is gone. I asked him what it was like for him during the two years Erica bravely fought and fought and fought to stay alive. I saw his answer in his eyes.

Mom and Liz

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Call on Congress – March 5-7, 2012

I’m in Washington DC with my daughter Elizabeth Anne, to participate in the 2012 Call on Congress – Fight Colorectal Cancer.  My event packet states, . . . guaranteed to empower and exhilarate you, as well as make a big difference in the lives of others living with, and at-risk for, colorectal cancer.  For the next few days I will learn from fellow advocates – how to get more involved with “Fight Colorectal Cancer.”  Tonight was about having fun with Liz and some of her friends – survivors who laugh and share stories about how they play the cancer card!

Their stories are raw, horrific, funny, sobering, informative . . . they live with cancer. Little or no hair left. Or hair that grew back thick, darker, different. Table conversation could be uncomfortable for outsiders but for tonight’s group it was no big deal to quiz each other about their colostomies, whether or not they still have a “port” implanted in their chest for chemotherapy treatments, and “did your cancer spread to other parts of your body?”  And then laughter erupted when the “cancer card” stories began – those times when there is no other explanation for forgetting the dog’s vet appointment, why food tastes weird, and a spontaneous road trip to see a friend who lives in another state.  All bases are covered with a simple statement, “I have cancer, don’t you know.”

The three Baker sisters lost their father to colon cancer.  Marsha Baker is now the full time director of the Steve Baker Colorectal Cancer Alliance ( – Conquering Colorectal Cancer. One Conversation at a Time . . . . Steve Baker Colorectal Cancer Alliance is a non-profit organization committed to advocating the importance of early detection and prevention of colorectal cancer.

Pam Darby Seijo, S4 colon cancer survivor, has been on chemotherapy treatment for ten plus years.  When she was 39 years old she was given a little one a year to live.  Ten years later she is walking the cancer journey.  Since she retired from Raleigh County Board of Education she and her husband spend a lot of time doing volunteer work for cancer causes.  Her favorite quotes are Walk in Faith, not in Fear and Live life daily like there is tomorrow.

Rose Kimmel Hausmann and her husband Eric, organize fundraising events – horseshoe contests, softball tournaments, and fabulous food get togethers (every item sells for $1).  All proceeds go to Fight Colorectal Cancer. I met her son last night; his sweatshirt read,  “Life Life Strong”. Take a look at this web page for more information (

I know we all live with the idea of death.  None of us gets off the planet alive.  We have many things to consider every day.  Our families.  Our causes.  Our jobs.  Our personal needs – picking up cleaning and shopping for groceries. But I get the impression that my daughter and her cancer-survivor friends who bear the physical and emotional scars of their cancer journey, handle each moment with a tad bit more care and appreciation.  I’m grateful for the opportunity to be here in their midst.

Rose, Liz, Pam and Baker Sisters

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Mountain Gorillas – Into the Forest

Less than 800 mountain gorillas are left in the the wilds of Rwanda, Uganda, and the Republic of Congo. As our group walked about a mile through the farm fields before reaching the forest, I was surprised to see humans were plentiful – living in traditional mud huts, tending to potato fields, washing clothes in a nearby lake, and watching over herds of goats.  I expected  a remote sanctuary for the gorillas, with no humans nearby. When we arrived at the edge of the forest I saw our first challenge – the stone wall, which was built by villagers (who were paid by the government) to keep out elephants and buffalo and to delineate the park boundary.

Kim climbs the wall.

We lined up to climb the wall; one-by-one we planted our feet on the volcanic stones and reached out for a “hand up” to steady us as we went up and over the wall.  On the other side of the wall I peered into a thick jungle.  I couldn’t imagine how we would make our way through the towering stems of the bamboo forest.  It was so thick I couldn’t see anything in there.  We started asking questions: Where are the gorillas? How far do we have to walk?  How do we get through the forest? Our guide had one answer for every question we asked: “Just enjoy the moment. Don’t worry. We will find the gorillas. Be happy.” We had to walk single file behind the guides who cleared the path in front of them. They used machetes to whack bamboo and slice through stinging nettles. It didn’t take long to figure out why our gear list included gloves. Just one run in with the nasty needles and out came my gloves.  Nettles are covered with tiny, nearly invisible stinging hairs that produce an intense, stinging pain, followed redness and skin irritation. How on earth do the gorillas feast upon these green monster plants, I wondered as we trudged ahead.

Stinging Nettles

Our guides communicated via walkie talkies with the trackers who had gone in search of the Sabyinyo gorilla family earlier in the day. They thought we would catch up with the troop within the hour.  They were wrong.  The gorillas kept moving. We followed.  The higher we climbed the harder it was for me to breathe.  My heart felt like it would explode in my chest. I could hardly keep up with my travel partners. When we stopped for a break and sip of water I explained to the guides that “my wings had been clipped” after my open heart surgery in December 2008. Climbing in high elevations strained my enlarged heart. I could do it, but I had to go slow – pole, pole (African word for slowly). One the men in our group explained he was a doctor and asked me if I should even be “doing this.” I assured him I knew what I was doing, had doctor approval, and besides – this adventure was high on my bucket list. I was determined to fulfill my lifetime dream of seeing mountain gorillas – up close and personal. With this new information our guide put me to the front of the group. “You will set the pace,” he announced to me in front of everyone. “How much does this mean to you?” he asked. “It means everything to me – dream of a lifetime,” I replied. “Then I will get you to these gorillas,” he declared. “Follow me,” he said with confidence then stepped in front of me and cleared our path with his machete. I struggled forward, thankful for the strong hands and arms that pulled me along when the going became steeper.  We continued on for another hour or two, when suddenly we could hear the guides talking to the trackers. They found the Sabyinyo troop. “Set down your rucksacks. Cameras only beyond this point.” We obeyed. Excitement mounted. At last we would see the mountain gorillas.  To be continued . . . . . .

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Mountain Gorillas – Rwanda, Africa

In the North Western region of Rwanda are the mighty Virungas – the chain of 15,000 ft. volcanoes stretching through Rwanda, Uganda and the Democratic Republic of Congo.  I started my first gorilla trek at the base of these mountains in Rwanda in January 2012.  The Gorilla Trekking Certificate I received at the end of this first day states that I visited the Sabyinyo group, named after the mountains I climbed.  Our band of eight trekkers climbed the steep trail, often bushwhacking our way through the bamboo and stinging nettle bushes.  I had no idea the climb would be so steep, the trail unmarked except by the guides and trackers ahead of us, and the gorillas so hard to find.  At one point I stopped on the trail wondering if I could make the climb and/or find the ever-moving Sabyinyo group we were assigned earlier in the day.  For the next few days I will write stories of my mountain gorilla adventure and share photos.

Longfellow Adventurers - Kim, Alan, and Joyce Anne Longfellow - guides (green uniforms) and porters (blue uniforms).

On our first Rwanda gorilla trekking day our group of four (me, Alan Longfellow, Kim Longfellow and Ginny Layden) gathered at the Parc National des Volcans early in the morning where our driver hooked us up with a guide.  Groups of eight trekkers are sorted out from among the limited number who had purchased $500 permits for the day. Lucky for us, the numbers of gorilla families (troops) has increased over the past decades – thanks to gorilla conservation efforts –  so that several groups of eight are assigned to different family groups.  We didn’t have to share our group’s gorilla experience with anyone else – just eight of us climbed together for our one-hour visit with the gorillas.

While our guide, driver, porters, and trackers (via remote walkie talkies) sorted out the details of the family we would visit, we drank hot coffee and watched local dancers perform.  We could hardly restrain ourselves from joining the dance troupe; we swayed and clapped from the sidelines.  I was a happy photographer capturing many movements of the dancers.  And then it was time to gather and find out what we had in store for us.

Dancers - Volcanoes National Park

Our guide explained the rules of the trail – stick together, check our gear (gloves to protect our hands from stinging nettles, gaiters wrapped around our ankles to keep the chiggers out of our boots, rain gear, water, snack, walking stick, rucksack, camera equipment), and would we like to hire a porter for the day – to carry our rucksack and/or camera equipment?  Once we all learned that these porters were once gorilla poachers and that they were part of a successful rehabilitation program to draw them away from their poaching activities, we all hired one.  Cost was $10 for the entire day.  In the end this was the best decision I made.  My porter not only carried my gear but often pulled me up the steep trails.  Never left my side.  Once we were all set, had received information about our gorilla family – the Sabyinyo group – we set out across the potato fields and headed for the mountains. To be continued . . . . .

Trekkers in potato field - start of journey to gorillas

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