For the record I thought I’d be dead by now. I know that is an odd thing to say, and yet it is true. When you expect to die fairly quickly and you keep living it requires a reframing of your reality. In July this year I will take the last marble out of…
You don’t really get to know somebody by roadside signs. Even trying to Google them you may come up short. So you can get to know me as a person before you vote for Rocky Mount City Council on Tuesday, October 10. I invite you to download a free, digit…
Like many of you I have been concerned by the recent allegations made about the ethical conduct of a few Rocky Mount City Council members. Conflict of interest, especially within government or non-profits, has been in the news a lot lately. Every busin…
“Cities are places of human convergence, where people live, work, and play. But beneath the bustle of any city are systems that make these hubs of humanity function. Cities are akin to living things that take in energy, metabolize material, and spit ou…
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.
Three years ago today I spent most of the day in waiting rooms at Duke Cancer Center getting tested, scanned, and evaluated for cancer treatment. Danelle and I had come straight from family vacation to The Cancer Center the previous day in a grueling eleven hour drive. Those days were filled with anxiety and uncertainty. More than 80% of people with advanced, metastasized neuroendocrine cancer are disabled within a couple of years and die within five years. I wrote about those days in Dying to Go On Vacation which you can order from Amazon or shoot me an email and I’ll sign and send you a copy for a few bucks more. Like I said, that was three years ago.
Three years later I’ve learned hundreds of life lessons. I have spent my time striving to love deeply, live passionately, and listen to God more intently. I have had a myriad of treatments with only moderate positive responses and lots of side effects. My tumors have grown yet I am still able to function, work, and more importantly, go on vacation!
Each year about this time I try to share with you, my friends, the lessons gained from the previous year. Here are just a few of the things I’ve gleaned from the past twelve months:
1. Everybody is dealing with something.
Some are visible like obesity,a speech issue, or a physical struggle. Some are invisible like depression, OCD, or MS. All of them are real and let’s face it, for most people there is some part of life is just hard. One of the things I’ve realized is that we often want others to judge us by our best days, and we are often guilty of judging others by their worst days. When you see somebody struggling over something that seems trivial to you, you have no idea what difficulty they are dealing with in another part of their life that very moment.
Over and over again people have come up and thanked me for writing about my struggles, for speaking about my doubts, and sharing my pain. Some how by doing this it has given them voice to to the same. It is not easy to be vulnerable, and often after I do it I go home and wonder, “What was I thinking?” If I have learned nothing from the past three years, I’ve learned that everyone is dealing with something, and when you share your wound, it validates their struggle. This brings me to lesson number two…
2. When you are vulnerable and open up it gives others space to do the same.
When I wrote a book about part of my journey I didn’t realize it would be an invitation for others to tell me their story. Sharing our stories is important. Our stories tell more about us than all the personality assessments and Facebook tests combined. I had oftener wondered why, when asked a question, Jesus always told a story. He rarely actually answered the question, he would simply launch into a parable about a man robbed on the side of the road or a farmer with a field.
As an introvert in interpersonal, social situations, having a line of people standing waiting to tell me
their story after I speak some where is petrifying. I want to make sure every one of them is heard, because I know what it is like to suffer with an invisible disease or a pain you have seldom given voice to, yet is is still hard. I have heard some very difficult stories about abuse, neglect, and more than once somebody losing their job because of their sickness. I have cried with a lot of people, laughed with many more and, most of the time, just listened. Most of the time we don’t need anyone to fix our problems, we simply need to share our story. We need to know that somebody has been through a similar struggle and survived. We simply need to have our story validated as part of our life’s experiences and have somebody to share it with.
3. Being uncomfortable with another’s struggles is not bad.
Sometimes those stories made me uncomfortable but that is not a bad thing. We do anything we can to escape being uncomfortable, yet I have found we learn life’s deepest lessons when we are suffering from some form of discomfort, rather than when we are at ease in our own little life cocoon. Some where along the way we have made an idol out of comfort. In most cases comfort leads to complacency, and complacency leads to stagnation. I am learning to listen and to live into other’s discomfort. During those moments if discomfort there is the overwhelming temptation to try to escape.
What I’m learning is that even when it is uncomfortable, you must try to stick around anyway. In the past year I have found myself in be hospital rooms, mental wards, and living rooms. I’ve been uncomfortable in a hundred different ways and I’ve tried to embrace the discomfort. I haven’t always succeeded. I like comfort as much as the next guy, however like I said before, the best things seem to happen from times when you were the most uncomfortable.
As I re-read this, it occurs to me how counter-intuitive it is to everything that we are taught in our culture. We are encouraged to “put on a good show,” “pull ourselves up by our bootstraps” (not that I actually have boots), or “fake it till you make it.” What I’m learning is that in the end, when you “put on a good show,” that is all it is, a show. Real life is hard. Cling to those days that are good, share your story, and strive to live passionately! Quit the show and embrace real living!
If you want to help me celebrate my 3rd Year Cancerversary, how about joining me Friday and Saturday, July 15 & 16, 2016 for Into The Woods at The Dunn Center. This is a real show!
Gracious God, who, at the dawn of creation, gave humanity tasks to do, grant that I may use my hands to bring your Kingdom down and make the most of the time you have given me. Thank you for granting me the ability to do things that produce a tangible result, that allow me to focus for a while on something that isn’t cancer, and that brings me joy. In the name of the carpenter who became Savior, Jesus, I pray. Amen.
Frustrated with negative talk about the UMC, the Rev. Dr. Marty Cauley points out five things the church is doing right – including holding difficult conversations.
If I read one more well intentioned article about what the church, particularly The United Methodist Church, is doing wrong I think I will scream. Yes, I know we are struggling with years of decline. I know our buildings are old, our polity is complicated, and we are not trend setting, wearing skinny jeans, and we don’t have many “rock star” preachers. So what. Garrison Keeler is fond of noting that
The United Methodist Church is not very good at “tooting its own horn.” So as a dedicated, often conflicted, sometimes frustrated, United Methodist I want to point out five (of the dozens and dozens) of things The United Methodist Church is doing right.