Can you support CaringBridge during our Fall giving campaign? Generous donors like you ensure that CaringBridge remains ad-free, private and protected.
The Highest Summit
Mar 25, 2017 Latest post:
Aug 1, 2018
In choosing to live an adventurous life, one accepts the risks associated. We plan for the possibilities of life in the mountains or life on the road. We play out scenarios in our minds as a way to minimize the risks we choose to take on. What if I fall off a mountain while hiking just slightly beyond my comfort zone? What if I get a serious illness or parasite when traveling in the developing world? What if I push just a bit too hard and break a bone or tear a muscle? We accept the unknown not recklessly, but with open eyes and minds. In understanding the risks, we gain a sense of control and freedom to choose our own destinies. We challenge ourselves to summit the next peak, collect more passport stamps, push ourselves to places we never thought we could go. As a result, we grow, we learn, we become more compassionate, more patient, more open, and we learn how strong we actually are. Who we become as a result, make the risks in choosing an adventurous life worth it.
There were a thousand scenarios I had played out in my mind when I left for Central America. All of those scenarios, in a way, I had analyzed in my head for their associated risks. I tried to minimize the risks I could by purchasing insurance to cover me on the road and when back at home. Like any seasoned traveler, my partner and I planned a route and learned where the dangers might be. Of all the ‘what if’ scenarios we planned for, none of those scenarios however ended up being a part of my story.
I was 39 years old when we left for Central America, but I felt in my body and spirit to be much younger. Despite the challenges of two adventurous souls living in a busy city for the previous two years, we were bonded by the challenges we had overcome and were hopeful for a future ahead of us. I turned 40 watching the sunrise on the highest peak in Central America, after a grueling climb and a freezing night. The world felt full of possibility, and although family illness was still drawing me back to the U.S., my spirit felt free and my body invincible.
I remember the first time I felt the mass, and I remember thinking it must have been caused by my new backpack. The chest strap hit across my chest and I decided the heavy load must have damaged my right breast. After a month passed, the mass hadn’t shrunk and I started the process of considering where in Central America I might be able to find adequate medical care. My research indicated that Costa Rica had good medical facilities, and because 80% of masses are benign, and I was incredibly healthy; there was no real cause for concern.
I can’t recall the words Dr. Monica Lopez used to describe her concern, but I will never forget the look on her face as she looked at the tumor using ultrasound for the first time. She was calm but serious, and this was clearly not a typical gringo tourist problem. Life’s path changed in that moment. Decisions about where the travel road would lead to the next day changed to interpreting mammograms, biopsies and clinical reports.
We cried a lot in that first week. As we scrambled to try to learn more about causes, we struggled with the unknown origin of the terrifying “c” word, which felt like it had invaded my previously healthy body. I was sure there was something I had done to cause the invasion, and the guilt was unbearable at times. I struggled to tell the people I loved, knowing the pain it would cause to hear the news. I was confused, angry, and afraid, but mostly, I was heartbreakingly sad. There were more questions than answers, and we found a mixture of comfort and fear in our internet searches. The internet is a blessing and curse when you are newly diagnosed. Information is easily accessible, but to interpret that information as valid when one is not in their soundest of minds can be overwhelming. We read countless accounts of people who rejected the traditional western models of treatment, as well as inspirational stories of people who found great benefit and even recovery from the natural world. My medical brain was confused to say the least. I was now afraid to eat anything, terrified to feed this living “thing” in my body. I wasn’t sure what information to believe or who to trust on either end of the spectrum and felt that neither path, the natural or traditional models, fully fit me as a newly diagnosed cancer patient. I was in this no man’s land searching for answers, similar stories and people who chose similar paths. There are numerous theories and opinions about the origin of cancer, and in weeks we explored most of those theories for answers. After hundreds of hours of researching, we never found the answer to the origin of my cancer; and like all cancer patients, we likely won’t ever know for sure.
Like many of life’s great questions, in the end, you gather as much information as you can, look at it from every angle, and finally come up with what makes the most sense for you. I don’t think there is any one right way to treat cancer. Each person is unique and I had to come up with what I know about my body and what makes the most sense for me. I believe that western medicine is going to help me clear the active cancer from my body, and the natural world is going to help me recover, heal and prevent its re-occurrence.
In that first week of diagnosis and while still in Costa Rica, I contacted my insurance company. I am not sure what I had expected, but to hear the words “your claim would likely be denied as it had to have been a pre-existing condition” felt like a sucker punch to the stomach. I have been fortunate and have lived a life free of medical difficulties for the most part. I have never spent a night in the hospital and the worst I have experienced usually has had to do with some sporting event or playing too hard in nature. I “follow the rules”, and have never taken the risk of having no insurance coverage. To add to the irony, I have worked in healthcare for sixteen years. I have seen the devastation first hand that no coverage, or insufficient coverage can do to an individual and to families. My nightmare now took on an entirely new dimension.
Within a week of the initial diagnosis, we landed in Jacksonville, Florida. My parents thankfully live close to several state of the art facilities, and it made the most sense for us to continue to explore our options near family. It felt comforting to be surrounded by the love of family. We made an appointment for the earliest availability at the Mayo Clinic in Jacksonville, as to not let the pending insurance drama impact the necessary care for survival. We agreed to pay out of pocket and scrambled to find insurance coverage simultaneously. Thankfully, Obama Care has not been repealed (yet), and although rolling admission had ended, I was able to qualify for and exception of coverage. The bad news, is that coverage still had a month’s gap in time before going into effect. We decided to continue to pursue treatment as efficiently as possible and not let the fear of the expense hold up necessary testing or surgical procedures. Luckily the medical team at Mayo Clinic felt it was safe to wait the additional couple of weeks for surgery and chemotherapy. If this were not the case, the financial implications could have been devastating. In the United States, one month can easily mean hundreds of thousands of dollars in medical bills, I am fortunate in that it will likely be in the tens of thousands for me instead.
Unfortunately, my story is not unique. There are people every day who are faced with medical news that change the course of their lives indefinitely. At a period in life when the focus should be on healing, coping, and self-care, in the U.S., much of our energy is spent on the enormous financial burden medical care puts on individuals and their families.
I believe whole heartedly in the power of collaboration and in positive group energy. I know how important support from family, friends and communities are. My goal is to use my experience to support others in similar situations. No path to cancer is unique, but undoubtedly, we have an opportunity to support, educate and influence the path to treatment and an ultimate cure.
There is an analogy that continues to play in my mind and I have grown to find enormous comfort in it. I can’t help but think of this journey like the summit of a mountain, or the achievement of an athletic goal. When we set a goal of summiting a mountain, it is often overwhelming to think of reaching the top. We don’t want to imagine the pain of the hours and often days it will take to get there. So, we set small goals, and we celebrate the success of each step. We often rely on our teammates, family, and adventure partners to motivate us, and pick us up when we fall. We need our bodies to be in peak condition to achieve the impossible, so we feed ourselves with only the best, and we keep ourselves as strong as possible. At times, we feel strong enough to move mountains, and at times so weak the wind could blow us off that same mountain. But we prevail, we persevere, we put one step in front of the other, looking toward the summit and we know that as long as we can keep on moving we will eventually get there. The view will be worth the struggle, pain and the tears, and we will forever be better for the journey we took.