Monday, July 10, 2017

4th Year Cancerversary: The Days Are Long, The Years Are Short

The Days are Long, the Years are Short

Four years ago today I was sitting in a hospital room in Erie, Pennsylvania when the doctor came in and confirmed the diagnosis that no one wants to hear, “You have cancer.” Happy Cancerversary! A little research about neuroendocrine cancer revealed that about 85% of people with the level of distant metastases that I have die within five years. The last four years have been a roller coaster of emotions and experiences. I have sought to love deeply, live passionately, and listen to God like never before. I have had days when I could barely walk, and other days when I have trekked miles across the Galilean hillside with my daughter and watched the sunset over Jerusalem. As I reflect on the past four years, there are a few things I wish I had known when I started. First, prepare for a marathon, not a sprint. Secondly, only you know what is best for you. Lastly, the days are long, but the years are short.

Prepare for a Marathon

I am not a runner. When I speak to a live audience I usually tell them that if you see me running, you should be running to because something really terrifying is behind me. That being said, I really don’t understand what motivates people to want to run 26.2 miles to get a medallion and put a sticker on their car. After talking to quite a few runners I have learned that every one of them have different motivations for taking on the challenge.

The key to doing anything for the long haul is to understand what motivates you, to set small goals that will lead you to the finish line, and to keep running. Most of us live our lives passively rather than passionately. We just get up, go to work, come home, go to bed, and repeat. If we aren’t careful we forget our inner “why?” Spending time in some serious self-reflection allows you to get clear on exactly what it is we are living for. I believe we have a life calling that is bigger than the mundane routine of our daily existence.

Once we know what our motivation is the key to living it out is small, daily steps. Taking the big goal and breaking into small enough is the key to keeping going, The ability to look back and see progress is incredibly motivating. Four years after my, diagnosis, I went away to the beach for a week. During that time I filled giant flip chart paper with goals. Now, four years later, those goals are finished. New paper is on the wall as I revisit the process to create a new set of goals to keep pulling me forward, one step at a time.

The other key to running a marathon, according to my friends, is to just keep running. Run in the rain. Run when it is cold. Run when it is hot. Four years ago I thought I was running a sprint. That this would be a fast, short sprint to the finish line. Then the line kept moving. I’m not complaining, I’m happy to have more time with my family and friends. It is, however, difficult to keep running when you aren’t sure where the finish line is.

When you hear the “C” word you become incredibly aware of your mortality. What nobody really tells you is that it is going to be a long road home, and no one can really tell you how long so all you can do is understand your motivations, set big goals broken into small steps, and then to just keep running.

Only You Know What is Best for You

Early on I read a phrase in some of the cancer materials that has stuck with me. “You are your best patient advocate. Only you know what is best for you.” Having a long-term, terminal illness means that everyone wants to give you advice, recommend treatments, and encourage you to “fight.” I genuinely believe that all of these people love and want what is best. Eventually you have to be the one who actually makes the decision about what is best for your situation.

In our house we often have the “quality versus quantity” conversation. It is a tough one. Is it really worth it to subject yourself to a treatment if it makes you so sick that you can’t function? This is especially true with cancers and diseases like mine where no treatment has proven to be “curative.” All of my options will only treat the symptoms and, perhaps, slow the tumor growth. The issue is that some of the treatments that slow the tumor growth come with a bonus package of  dozens of different side effects like chronic fatigue, joint pain that makes it hard to walk, and, of course, nausea.

Whether or not you take a treatment is your decision. Get that? Your decision. Sure your family can encourage you. Your doctors may try to convince you and maybe even share the possible consequences of rejecting a treatment plan; in the end it is your decision. One of my friends with small children has subjected herself to a myriad of treatments hoping to find the “magic bullet.” Why? Because she wants to see her children grow up. If my kids were that young I would likely do the same. I am in a different place in my life. My children are grown, and while I would love to stick around, I also want to live every moment I have left passionately. It is really hard to live passionately when you are throwing up all the time or so tired you can’t leave the house. Four years ago, I wish I fully grasped the idea that “only you know what is best for you.”

The Days are Long, the Years are Short

I woke up last week and realized it has been four years that I have been getting scanned, taking meds, and dealing with cancer. In some ways that is hard to believe. I’ve had four Christmases (when originally I wasn’t sure I’d make it to the first one), four birthdays, and four anniversaries. I’ve been to England and Israel, written a book, and been to New York City to see a Broadway play. I can truthfully say I’ve had as more experiences in the last four years than any similar period in my life. Time flies when you are having fun.

During the last four years I have also spent hundreds of soul numbing hours in waiting rooms, anxiously waiting for test results. I have had so many shots I have scar tissue in my hips, had so many scans that I might glow in the dark, and recovered from surgeries, treatments, and pneumonia. I have done funerals for people that I love and had friends also receive a cancer diagnosis, get treatment, and die. In some very real ways there have been a lot of very long days. Days I thought would never end. Days when I’ve had bone-crushing chills, when the side effects were so bad I wondered if I’d ever get better. Days filled with tears, pain and uncertainty.

When I look back, however, the bright moments of sunrises, warm embraces, and adventures out shine the dark ones. Suddenly four years have passed. Four years ago I wish somebody had let me know that while, yes, some of the days would be excruciatingly long, before you knew it the years would fly by. When you are dealing with a long-term, terminal illness the days are long, and the years are oh so short.

Happy Cancerversary!

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