Boots Beating Cancer is a 24-hour non-stop solo hike taking place on Saturday, September 19 through Sunday, September 20 to provide funding and raise awareness for cancer genetics research and genetics counseling. 100 percent of all donations received will directly benefit Penn State Cancer Institute's Cancer Genetics Program. With these donations, the Cancer Genetics Program can expand its services to mid-state families. In addition, donations will be used to assist in covering the costs for families who cannot afford or their insurance will not pay for genetic testing and counseling.
Maria J. Baker, LCGC, PhD, FACMG, with the Penn State Cancer Institute's Cancer Genetics Program, shares, "Our greatest need right now is for funding to cover the genetic counseling for patients referred due to indications other than personal or family history of breast cancer. The reason the funding is needed is because the Federal plans that cover those on Medicare, federal employees, those in the military, and the medical assistance plans do not recognize the training and qualifications (board certification, licensure) of Masters and Doctoral trained genetic providers. Our federal bill, H.R.3235 Access to Genetic Counselor Services Act” seeks to eliminate this barrier to patients accessing genetic services by a qualified healthcare provider."
Very few of us have not been touched by cancer in some way. Either battling it personally or watching a friend or loved one struggle with the disease, cancer leaves an indelible mark on millions of people. It is a brutal creation whose sole mission is to destroy lives.
My story began in September 2014. We were eating dinner at a local restaurant to celebrate my parent’s 45th wedding anniversary. Everything seemed normal on the surface; everyone was engaged in conversation while enjoying the normal favorite dishes. My father had ordered crab cakes, which were one of his favorite foods. He had finished one of the two crab cakes before deciding he had had enough for the evening. I can recall this being odd at the time because Dad rarely left food sit on his plate.
Fast-forward several weeks. I was at work and received a tearful phone call from my mom. Obviously I knew this was not a good call, and anticipated it being about my grandmother (who was not in good health). “They found a large tumor in your dad’s abdomen…” I don’t recall much of the conversation after that sentence. My mind was flooded with thoughts of what this meant, what was the prognosis, and how much time did he have. Further tests revealed a grapefruit-sized malignant tumor where his stomach and esophagus met. It was big, and it was well-advanced. Several weeks of limited eating had left Dad weak and in poor condition to attempt any treatment. The game plan was to try and get him healthy enough to attempt chemotherapy to shrink the tumor, although this was a palliative treatment and not a cure. In the next month, Dad would have a stent placed in his esophageal sphincter, followed by a feeding tube implanted into his small intestine. His diet consisted exclusively of water and ice chips since these were the only items he could stomach without feeling nauseous. As a matter of fact, I don’t recall seeing him eat anything but ice chips for nearly three months.
During this period of time, his life consisted of constant discomfort. If he wasn’t fidgeting around, he was burping or dry heaving from the tumor’s pressure. He became more and more withdrawn and spoke very little. I can only guess as to what he was thinking about. Most of the time I spent with him was intended to keep him company so he wasn’t alone. It also gave my mom a little bit of a break from treating open wounds and loading up cans of liquid nourishment into his feeding tube pump. I can recall Thanksgiving that Fall. I felt so much guilt “giving thanks” as my father was dry-heaving in pain in the next room. To this day, I have not spent Thanksgiving at my parent’s house because that memory will never escape me.
December slowly progressed, as did the cancer. The feeding tube had helped stabilize him, although the wound constantly weeped gastric fluid, burning his skin. His lower legs were enormous due to fluid build-up, which was compounded by Type II diabetes. Around New Year’s, it was decided to try chemotherapy in an effort to shrink the tumor. I’m fairly certain my Dad only did it so he didn’t appear as if he’d given up, but anyone that had been around him knew it would only buy a little more time. In essence, it was buying him more time to suffer. Chemotherapy started and contrary to the common tale, Dad had very little of the ugly side-effects typically associated with the drugs. He was actually somewhat upbeat afterwards since the experiment had been largely uneventful. However, his weakness had him limited to a small den area of the house where a TV and hospital bed had been situated. He didn’t even leave to go to the bathroom. The weakness was no surprise due to the chemotherapy, but his feet and lower legs were retaining huge amounts of fluid. The fluids were so abundant that it would seep through his skin via large blisters, soaking the carpet below. These blisters would soon fester into wounds that required special treatment and dressing at the hospital’s wound clinic.
As January wound down, I noticed changes in Dad. He became more agitated, more restless, and more confused. One particular day, it was so bad that my mom and I decided he needed to be seen in the emergency room. At this point, he was unable to walk and could only be moved by wheelchair. Arrangements were made for a special ambulance van to transport him to a local hospital. Upon arrival it was noted by one of the emergency medical technicians that Dad’s heart had entered a rhythm known as atrial fibrillation. He was immediately seen in the emergency room and within a few hours admitted to the intensive care unit. My immediate family was summoned, and traveled from various locations to see Dad. By the next day, our family had arrived to be by his side. My sister and aunt decided to stay with Dad that night so my mom and I could rest. It was a cold weekend with off and on snow showers, so we decided to stay at my house which was closer to the hospital if we needed to return in a hurry. I kissed my father on the forehead and told him I loved him, to which he replied in the same.
At 5 AM the next morning, I was woken up by a phone call…we needed to get to the hospital fast. My mom and I threw on the closest garments of clothing and quickly got to the hospital. Dad was unresponsive at this point. His eyes were closed, and he could not respond to any verbal command. We whispered our respective messages in his ear, and at 6 AM, he slowly passed away. Sadly, those few moments before he died were the most peaceful moments I had seen of him in nearly four months. As selfish as it sounds, his passing was a blessing. His suffering would be prolonged no more.
My father was a big influence on my life. He helped mold and guide me into becoming the man I am today. I watched his successes and failures, his strengths and shortcomings, and forged my own path based on his examples. Watching the suffering he endured during his cancer lit a fire in me. This life we have is short, and it’s much bigger than just us. We can make it as miserable or joyous as we want it to be. We can choose to be selfish or choose to do something bigger than we ever dreamed possible. The thought of positively impacting other’s lives beyond mine became a mantra, and thus this idea was born.
I wanted to start something different, something “outside the box”. Cancer had become the enemy, and I didn’t want it to cause the same suffering in others as it did in my father and my family. His suffering would be the motivation. His death would mean something. I know that it’s impossible to rid the world of cancer. There are just too many factors that cannot be eliminated. However, many cancers can be detected early by genetics testing and appropriate screening procedures. Catch it early and give people a chance to survive and beat cancer.
My concept was simple: I wanted to incorporate some of the mental and physical suffering that cancer causes and bear that weight for 24 hours…alone…non-stop. I wanted it to be hard. I wanted it to hurt. I wanted to have to push myself mentally and physically. I know that this in no way compares to the level of suffering that my father or any other cancer patient has faced, but maybe my relatively short period of suffering will save someone else from having to do it in the future. The idea of a 24-hour solo hike was born.
I would love to raise a ton of money to advance research in genetics testing and help people get testing that want it…especially if they cannot afford it or insurance won’t cover it. At the very least, I want people to know that genetic testing exists and is available locally. As clique as it sounds, if my hike can help one family not suffer the indignities of cancer, I’ve succeeded. I can promise you that I won’t stop. Walk, stumble, or crawl…I’m in it until it’s over.
I’m a 42 year old, regular guy who lives in Harrisburg, Pennsylvania. I was born and raised in central Pennsylvania, which I will always love and consider my home. I’m not a marathon runner, exercise junkie, or long distance hiker, so I’ve never done anything like this before. Believe me when I say I have no idea what to expect during the hike.