Hilleke’s Heartfelt Recollection
The staff at Padding Life is proud to bring you the following tale of Katie Hilleke’s life-changing discovery, embracing and adjustment to living with cancer. Though sometimes it might not seem like it, there’s a lot more to life than kayaking…
Okay, I am going to tell the whole story. Were there any symptoms prior to Honduras? That is what I have been asked over and over by the medical profession. There were. But hindsight is 20/20. I remember feeling abdominal cramps often, especially towards the end of the school year, and they were painful. But I can’t remember when they started exactly, maybe even a year ago or so. But they didn’t start out painful, it just gradually got worse over time. It happened so gradually that I never thought to go to the doctor. I didn’t have time because I was planning for Honduras.
Oh Honduras, there was a lot of heart in that plan. The mission was to practice my Spanish, do some kayaking and have an adventure. In that sense, mission accomplished. On the other side, the mission was to be part of a successful all women’s expedition to a third world country and run the hair! Unfortunately for Stacy and I, our part of the mission self destructed in 5 days.
Stacy Heer and I have been down many crazy trails in our journeys together. I loved all of them and I was blessed to have such a great friend to get us through the harder ones. This adventure started out like the rest of our adventures, facing down a challenge (and even some criticism) and going for it anyway along with Robin Betz, Jessie Rice and Laura Nash. We had plans for the “First All Women’s Expedition into Central America”, which sounded good to us. I was so excited to plan for this. It gave me so much to look forward to. I bought a new pin kit, a new rope, camping gear, hammock (with mosquito net, thank God), knife, new kayaking gear, etc. Each item was a step closer to being on our own in Honduras. I even wrote an article about planning for our trip in AW.
Our adventure into Honduras basically went like this. The night before we left, my brother Tommy and I set up a Z-drag in the back yard and a backpack carrying system for my kayak. I was so FIRED UP and nervous. I was nervous about the language, about getting around, running into guerrillas (not the animal type) and basically just getting in over our heads. I was not worried about colon cancer.
Stacy and I flew into Honduras the week before the other ladies, Robin Betz, Jessie Rice and Laura Nash, were scheduled to arrive.
Day 1: We arrived at the airport and were relieved to see that Jessie’s friends, Paul St Ruth and Rachel VanSloun, were waiting for us in a British edition Land Rover
Day 2: We kayaked the Rio Cangrejal.
Day 3: We paddled the river again and then took a ferry to the island of Roatan.
Day 4: We took glass-bottom sea kayaks to snorkel on the coral reefs.
Day 5: I began throwing up, but we went wake boarding that day anyway. That night: I began to experience severe abdominal pain and vomiting. Unfortunately the hospital was on strike on the island, so I had to wait till the next morning to go to the hospital on the mainland. It was not cool to be on a tiny airplane experiencing relentless pain surrounded by lots of strangers. Not surprisingly, the hospital in La Ceiba was also not the type of hospital you want to be in when something is terribly wrong with you. There was something that looked like blood on the floor, and the doctor had the pocket of his jacket stapled on instead of sewn on. But I was desperate, and I knew it was serious when I peed into a cup and it came out looking like cherry coke. They did an X-ray and an ultrasound, but couldn’t quite figure out what was wrong with me. No one at the hospital spoke English, so we were communicating in Spanish. This was great under normal circumstances, but I happened to be in severe pain, so it was a little frustrating. There apparently was some kind of blockage they thought, but didn’t have anyway of knowing what it was. They admitted me into a room at the hospital and let me know that they planned to exploratory surgery if I didn’t poop by the next morning (exploratory?). That’s when Stacy and I decided that I needed to cash in on my AirMed flight insurance, which I highly recommend having before leaving the country. Stacy did some major finagling, which involved several trips to a phone four blocks away to keep in touch with my parents, the insurance company, and Rachel (who played a key role in booking my flight home with the insurance company) since we didn’t have a phone in our room. They also wouldn’t give me pain medication because they were planning to operate and didn’t want me to OD before they actually performed the surgery.
Day 6: The AirMed people waited till day break, since there were no lights on the runway, to pick me up at the hospital and flew me to Birmingham where my parents and a very handsome gastrologist (Dr. TDH, Tall, Dark and Handsome, we called him) were waiting for me at the hospital there. They ran some test, and told my parents that they thought it was colon cancer, they spared me that knowledge for a few days.
Day 7: I had surgery to remove part of my colon, but I still had not been told it was cancer. It’s funny; I don’t remember how I found out that I have cancer. I must have been on too much morphine, but I don’t remember the words “you have cancer” coming from anyone. I knew it was serious when I found out Tommy was flying back to Alabama after just returning home to Colorado. I am sure someone told me it was cancer (they say it was the doctor), but in my memory, it was like I just knew.
After several days in the hospital I spoke with an oncologist (Dr. Doom, we called him) who explained that it was found in 5 lymph nodes, which meant that it was at least Stage 3c (I knew nothing of what that meant, but it sounded bad) He explained rather frankly that we would not know how bad it was for several weeks, when we could do a PET scan to see if it had metastasized to other organs, which apparently is also a bad thing. I never felt devastated, shocked, or frozen in a vision of death as fear set in like I would have expected to feel. The feelings I was having were actually somewhat familiar, although greatly amplified and inward.
I definitely asked myself, “why me?” many times in the past several months. It really bothers me that I was only 26, perfectly healthy, and took care of myself and I still got “colon cancer”, which as far as I knew was an old man’s disease. It had no business in the body of a 26 year old woman. In fact, 90% of all cases are found in men over 55. It didn’t seem fair that my body, which had no previous health problems, was marred in some way by this disease. But it is not fair that this disease can affect anyone, even men over 55. That would mean it should have picked my uncles, grandfather, or my dad. To tell you the truth, I’m glad it picked me this time. As a perfectly healthy young person, I’ll beat this soon and I won’t have to see someone I love struggle. Tommy, one of the most unquestionably optimistic people in the world, helped me to keep looking to the positive. We just refused to allow anything negative enter the picture.
The most daunting part of the entire experience has been going through chemotherapy. I have never felt so sick and so frustrated at knowing I have to feel that every other weekend for three days at a time for six months. It is a complete sickness where I am shut down the entire time and don’t even have the energy to watch a movie. The infusion lasts for three hours in the hospital and then another 46 hours through a portable pump at home. Getting through these times has been the hardest part. I can’t stress enough how important my friend, Stacy, has been to me while facing this part of the episode. She has been there for me in everyway, since packing my stuff while I was in the hospital and then riding back on the AirMed flight with me. She helps remind me to take my medicine when I am too nauseous to think about taking nausea pills. She sits and helps me to gather my courage as I watch nurses in gloves and protective clothing handle poison that they are planning to infuse into my bloodstream. She cracks a joke at the perfect time when the doctor visits are a little too heavy and my feelings begin to lodge into my throat. She helps me to remember that this is only temporary and I have to deal with it as each infusion gets slightly worse as it begins to accumulate in my system. She also helps me to remember that I am not the only one in the world going through this. There are lots of heroes out there going through much harder treatments than I am that last for years.
RUNNING THE GNAR (Treatment and Recovery)
I have been thinking for a while of how to write down exactly how important kayaking has been to me while facing this. Without kayaking, we probably would not have formed the bond that is carrying me through this.
It was truly a gift that paddling was in my life at this time. Kayaking really helped me to view the situation in a unique way. Kayaking became my analogy for approaching this new and dangerous challenge.
I had actually felt a similar feeling before when hiking into the Ravens Fork or the Lynnville thinking that maybe this river was going to be too hard for me. I remember this feeling distinctly above some rapids I had run, and more often rapids I had decided not to run. I began to think of cancer as a difficult rapid that was unportageable. My brother and his friends are actually the ones more used to this type of adventure. He provided some serious mentoring for me to help me grasp the seriousness of the situation and what I needed to do. First I was going to scout out the best line I could. I asked for all the opinions I could get, but when it came down to it, I made the decision because, after all, I was the one in the kayak. My family has been so supportive. They have given me opinions, and then have rallied behind whatever I decided to do. We all have been keeping a positive attitude, which I truly believe is the key to surviving anything. We checked out lots of different lines: different hospitals, doctors, and treatment options. The plan was to pick a line, deal with whatever happens in the middle, and be in the right place at the end of the rapid. I could do this.
I think that analogy kept me from being afraid and helped me focus in the beginning. Tommy and Stacy, who I had kayaked with on lots of challenging rivers have been helping me to keep that correlation in my mind. What I didn’t count on was the support from my friends and the rest of the whitewater community. I thought I wouldn’t see or hear from that many people for a long time. But I was so wrong.
My friends in Birmingham and the kayaking community pitched in and helped me out, just like they would help someone who was getting worked in a dangerous hole on the river, or pinned on some rocks. I had never seen anything like it. I felt love and support and encouragement from all around the country pouring in to help me face this daunting time in my life. I realized these people were made of the stuff that made good survivors: determination, a positive attitude, and a willingness to help out their buddies when the odds are stacked against them.
I would really like to mention everyone who has contributed to help support me through this. There have literally been hundreds of people who have sent support to me in the form of letters, cards, and donations to help me pay my medical bills that continue to roll in. I couldn’t possibly mention them all here without leaving out some important people. So I’ll just mention a few that come to mind off hand.
We are really greatful to Paul St. Ruth and Rachel VanSloun with Marble Hill Farms and St. Ruth Adventures for helping us get on our feet in Honduras, giving everything they could, including transportation, places to stay, river beta, and most importantly caring for me in Honduras when I was sick and helping Stacy and I get out of the country.
My parents are amazing and have really stepped in and picked up the pieces for me. I am so fortunate to have had them to fall back on right now. Also my uncles and aunts and cousins down in Alabama have really cheered me on.
My friend April Lambert and the Martin family first picked up the money raising effort. They opened up a bank account through Cahaba Heights United Methodist Church that was non profit, and held a benefit for me in Birmingham. It raised about 5,000 dollars and everyone I knew from Birmingham was there. George and the G men played for us and were great! I want to thank Megan and Joseph Hoskins and Elizabeth Hanky for helping out with that. Then a snowball effect began. Mike Brown, a friend of my brother’s in Colorado, picked up the torch with the Pikes Peak Whitewater Club and began a raffle, then became the organizer for all the donations coming from the whitewater community. Jason Hale and the boys at the Green River began a Green River Cancer Fund, which meant so much because these guys are like family to me. Then my friends Kirk Williams and Charly Albin held a fund raiser in Atlanta where lots of companies contributed items that were used to raise money for me. My friend April once again stepped up and contacted my friend Jeff Lane from the band Outformation, and they held another benefit in Birmingham for me. They auctioned off rock and roll memorabilia like paintings donated by Scramble Camble and “Frenchy”, a poster signed and donated by the Drive-By Truckers and more. Companies like WaveSport, Liquid Logic and Dagger donated custom built kayaks that were auctioned off. Bryan Kelson, started a website featuring “katie’s krew” stuff, which is so fun. Other companies and people that contributed to the cause were SouthMain, Jayne Clamp, WRSI, Shred Ready, John Grace, Penstock Productions, Immersion Research, Colorado Kayak Supply, Waterdog Productions, Jackson Kayak, Palm, Kokatat, The Range Life, Pyranha, Sweetwater Brewing Company, Patagonia, High Country Outfitters, High Gear and many other generous and incredible people from all around the country. In fact, the response was so powerful and so amazing that my medical bills that keep rolling in will probably be covered by the fund and there will be some money left that will be given to the Lance Armstrong Foundation and First Descents.
Despite the difficult nature of this particular adventure, many blessings have come out of it. After six weeks of lots of praying from people all around the world, we did some tests and it turned out that the cancer had not metastasized and that after the surgical removal of cancerous lymph nodes and part of my colon, there was no cancer left that was detectable on a PT scan. I was still facing months of chemotherapy. I now have two treatments left and one more minor surgery, and then I just wait and pray for the next 5 years that it doesn’t come back. I have learned so much through this journey, but I can’t wait to get back into my kayak!
We are now planning a fund raising kayaking effort into California this summer. Stacy Heer, Robin Betz and I are planning on raising some money through kayaking to donate money to First Descents and the Lance Armstrong Foundation. This is still in the planning phase, but we hope to make it available for anyone who wants to kayak for cancer. We want to raise as much money for donation as was raised for me. Most of all, I just want to be able to give the way people have given to me. I also want to feel that I am being proactive and that my battle with cancer doesn’t end when I finish treatments. We want to fight this cancer to the finish. It is a serious disease that a third of women eventually experience and half of all men. We all, as a community, need to participate in finding a cure and supporting those in their own battles with cancer until a cure is found. Our trip to California is just the beginning, but I am sure it will help me feel I have stomped down cancer this time in my own way on my own turf.
Maybe when this is all over, I will have the same feeling that I have had at the take-out of those same beautiful rivers. Maybe I will be so glad that I accomplished something so difficult to visualize myself doing. Hopefully, I will look back and see that no matter how hard it was, it was a beautiful thing.