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
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!
Friday, July 15, 2016
Tuesday, June 7, 2016
It is funny, when you have a terminal illness people feel free to ask you questions they’d never ask anyone else. Recently a “Facebook friend” (I really don’t know them closely) asked me about the crazy home remodeling projects I’ve been doing. They couldn’t believe I was spending the “time I had left” ripping up vinyl flooring and screening in my porch. It got me to thinking about why I keep doing these kind of projects. Like most things there are “reasons” for that I do them. I believe in being proactive, that is making plans and setting goals, and not simply reactive, waiting for things to happen to me. So, why do I keep doing stuff? I keep tackling these projects for a few reasons, first it is a tangible accomplishment, additionally it gives me something to focus on that is not cancer, and finally it brings me joy.
A lot of what I do as a coach, pastor, parent, leader, etc. doesn’t really produce tangible results. I believe it is all very important work, yet at the end of the day you have not really produced a product. When I tackle home projects, from building cabinets to screening in the porch, at the end of the project it is done. It is something I can point to, flaws and all, and see that not only is it done, but it stays done. I love working with people, helping them discover their calling, overcome life’s obstacles, and conquer a life transition. People, however, are never “done.” There is always another challenge, that is life. Sometimes you just like to look at something and say, “I did that!”
There are a lot of days when I am sick and tired of being sick and tired! Cancer demands a lot of attention. You have to be careful what you eat and when. You have to take your meds, get shots, go to the doctor. I explain to folks that having a chronic and/or terminal illness is like having another full time job. It also costs a lot of money both financially and in time you have to take off from work. It is kind of a bummer when you have to burn vacation days for doctor appointments or medical leave. When I am ripping out counter tops and scraping the floor I can, for a little while, focus on something that isn’t cancer. I can invest body and mind in solving the problems that arise and figuring out the best way to take on a task. It also allows me time, when doing mindless repetitive tasks that are often part of these processes, to have pretty frank talks with God about how much cancer sucks and trying to figure out what to do next.
Finally, I enjoy the satisfaction of a job well done. Oh sure there is usually lots of room for improvement. There are plenty of flaws in the cabinets I built or the floors I have put down. Even with these humility spots I get a lot of joy from knowing that I put my sweat (and sometimes blood and some not so nice words) into the project. I also have anticipated joy. I anticipate all the meals I will cook for friends in our new and improved kitchen. I anticipate the joy of sitting on the back porch, mosquito free, and listening to the birds in the morning while I eat breakfast.
These are just a few of my reasons about why I keep taking on projects and “doing stuff.” How about you? So what is that you do that produces a tangible result? What part of your life allows you to take a break from your struggles and focus on something else? What activities bring you both current and anticipated future joy? Leave me a comment below and tell me your story! Don’t forget to:
Tuesday, May 31, 2016
I called my doctor a couple of weeks ago and refused the latest round of oral chemotherapy to treat my terminal neuroendocrine cancer. I didn’t refuse it because I have given up. I have not quit fighting. I simply know that at this time it is not right for me. There are three reasons I gave up chemotherapy for right now, first it is not curative, secondly, I’m sick and tired of being sick and tired, and lastly it is hard to live passionately when you can’t leave your house.
The Chemotherapy Prescribed Was not a Cure
I have a rare disease. All of the treatments I receive are essentially palliative, that is they are designed to reduce the symptoms of the illness. If I am lucky, these treatments willslow down tumor growth. I take a monthly shot that reduces my symptoms and slows tumor growth, I will keep taking that shot. There are a few treatments in the FDA pipeline that have shown some results in reversing the disease, at least temporarily, but they are awaiting approval. The new treatment, much like the old treatment, was an oral chemotherapy pill that comes in a haz mat bag to be taken daily and has a list of side effects that can be overwhelming. Great things like explosive diarrhea, nausea, and bone crushing fatigue were in store for me once I began taking it. Sound’s great, huh? During my last series of oral chemo I literally had every negative side effect on the bottle, including getting pneumonia and with the exception of “death,” that I could get. Knowing that the treatment has a 0% chance of curing the disease and only a moderate (10-15%) chance to cause any sort of regression, I decided that the risk of debilitating side effects was not worth the tradeoff. This was my decision, and may not be right for you (or your relative). Those of us with these chronic and terminal diseases have to be able to make the best decisions we can, with the information we have, for our own particular circumstances.
I Am Sick and Tired of Being Sick and Tired!
I try really hard not to complain and to be consistent about speaking hope and wholeness into my life and the lives of others. As such, most of you have no idea that I have been seriously struggling since October 2015. In October I began to have some pretty serious pain and occasionally a fever or other digestive symptoms that are too gross to share. I went to my oncologist who referred me to a surgeon who ordered all kinds of really awesome and fun tests and scans. My favorite required me to swallow a mud flavored substance the consistency of bad milk and they they follow it through your digestive system while you are contorted into the most awkward positions imaginable. Yum! This revealed that my primary tumor in my upper small intestines was causing some blockage and my gall bladder was seriously inflamed, partly due to the shots I take to manage the disease. It is awesome when the treatment for one thing causes something else!
After spending October and most of November dealing with the symptoms and tests/scans, we scheduled surgery to bypass the tumor and remove the gall bladder the first week of December. What a treat way to spend my birthday week! The two-hour surgery turned into a four-hour surgery and the three-day hospital stay turned into almost a week. The gall bladder was much worse than they had anticipated. All of this to say that I spent the rest of December and a week or so in January slowly recovering and dealing with not being able to eat much of anything. I had severe lactose intolerance, and lots of other food issues while my system adjusted to the “new normal.”
In January I also started a new oral chemotherapy. The first couple of weeks weren’t so bad but as the chemical built up in my system I began to get serious digestive symptoms, my hands and feet swelled, I broke out in a rash, just to name a few. The oncologist reduced the dosage in hopes of controlling the symptoms, which did improve some but serious fatigue was still an issue.
In February, while still getting used to the meds, my beloved sister-in-law died suddenly. I was honored to officiate the funeral but it was very stressful for my extended family. That same week my mother began receiving Hospice care and permanently moved in with my sister. In March my mom died and I helped arrange and officiate at her funeral as well.
The icing on the cake was that in April I got pneumonia, a rare but not unusual side effect of the chemo med I was taking. I ceased taking the chemo pill while on antibiotics and something miraculous happened, the veil lifted. I had not realized how poorly I had felt taking the meds until I stopped for ten days. It was like somebody opened the blinds and let the sun poor into my soul.
My oncologist decided that the previous medicine wasn’t working for me after a scan that revealed that, despite all the side effects, my tumors were still growing. We discussed several options and she prescribed another oral chemo pill that would begin in May. I drove home and began dreading the next round of cancer chemistry experiements.
Wanting to Live Passionately
It is hard to live passionately when you can hardly leave your house. Due to some complications with my health insurance required mail prescription service there was a delay in getting the new chemo pills. The longer I went without the oral chemo the better I felt. Every day I felt stronger, and the world began to look bright again. I was able to get more done (like the crazy kitchen project Danelle and I have taken on) and was eating and sleeping better. I could ever drink a milkshake or eat ice cream without getting sick! That is when I made “the call.”
I contacted my oncologist’s office and the pharmacy and declined the new chemo meds, at least for the summer. I love the summer. I love sunshine, warm weather, and outdoor barbecues. I love going to the beach, smelling the salt air and watching the sunsets. I knew that if I started on the meds I would spend another couple of months trying to tolerate a whole new set of side effects without any hope of a cure and very little hope of any positive progress.
In our culture we talk a lot about “quality of life,” but we usually trade it for any chance at “quantity of life.” About this time, I began reading The Christian Art of Dying by Allen Verhey, a theologian and cancer patient. I decided that, at least for now, I was tired of being a cancer chemistry experiment without any real hope of being cured (apart from divine intervention of course) and that I wanted to make the most of my time. In order to make the most of my time I needed to feel “like myself” and not the chemo zombie that I had become in January through April. I realized that I had begun to lose myself, my spark, my passion for living while grasping desperately at straws to live a little longer. I am not willing to sacrifice who I am in order to be somebody else, some medical shadow of myself, for a little more time.
This is a decision I made for me. It is not medical advice. I do not know where you are, what treatments are available to you or your loved one. This was a profoundly personal and spiritual issue for me that I prayed about and continue to pray about. Then I talked it over with Danelle to make sure she was okay with it. Then I made “the call.”
It takes courage to go through with chemo, it takes courage to stop it. I once heard that being courageous was not the absence of fear, rather it is taking action despite the fear. I am giving up chemotherapy, at least for the time being, because I am committed to living passionately every moment I have left. I will not be defeated by cancer, or death, because my healing has already been paid for by the sacrifice of my Savior. Whether it is here or there, my healing is secured.
That is why I quit chemo…at least for the summer.
Gracious God, who walks with me through the valley of the shadow of death, give me the strength to live passionately today and trust you with tomorrow. In the name of the One who provided for my healing, temporal and eternal, Jesus I pray. Amen
Here is more about how Danelle and I view this journey:
Wednesday, April 27, 2016
Frustrated with the Negativity!
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
Reaching More People, More Diverse People, and More Young People
You may not know it but The United Methodist Church is starting more churches reaching more people, more diverse people, and more young people than almost any other denomination in the world. Most “church planting movements” are focused on spiritually displaced, middle class, Anglos filling their padded pew chairs with people from other churches. Thanks to the work of Path1 nationally, and the Office of New Faith Communities in my own North Carolina Conference, we are demonstrating a commitment to not only serve wealthy urban neighborhoods, but also struggling rural communities like Aulander and Winfall, NC. In addition to funding downtown, urban satellites, we are also seeking to reach minority communities, serve the growing Hispanic population, and create new places for second-life singles and young adults. In our own conference we have planted more than twenty churches in the last four years that represent the liturgical, theological, and cultural diversity of our communities.
The United Methodist Committee on Relief (UMCOR) is one of the best kept secrets in United Methodism. This disaster relief agency provides immediate and long term disaster relief both domestically and internationally. It is usually one of the first organizations on the ground, thanks to the global nature of The United Methodist Church, and stays long after organizations like the Red Cross pack up their trailers and head home. They provide emergency food, water, and supplies, and then stick around to rebuild homes, communities and lives. Staffed by a skeleton crew but fueled by hundreds, even thousands, of dedicated part-time and full-time volunteers UMCOR teams are at the ready for disaster wherever it occurs. They serve tirelessly and faithfully, often under the media radar because their primary mission is recovery not self-promotion.
Embracing the Global Nature of the Church
The United Methodist Church is growing. It may not be growing in the US or in Europe, but globally The UMC is expanding at a rate in South America, Africa, and around the Pacific rim at a rate that we can barely keep up with. I have been impressed at the way that The General Conference has embraced the globalization of the church and attempted to insure that the voices of these emerging global United Methodists are heard loud and clear. God is at work within The United Methodist Church, and I believe that the global revival that is occurring will spur renewal within the areas where our church is in decline.
Having a Big Tent
If you live in a town with more than one United Methodist Church I can almost bet that one of them is one of the most progressive churches in your community, and the other is one of the most evangelical churches in your community. I believe the fact that our denomination provides room for theological tension is actually a strength, not a weakness. Too often we are too quick to try to solve problems with pronouncements and legislation, when what we really need is civil discourse and the ability to love each other and disagree with each other. Like every family we have crazy cousins, and calm peacemakers, but that is what being the family of God is all about.
Having Difficult Discussions
Lastly, The United Methodist Church is willing to have difficult discussions. Don’t get me wrong, there are people on every side of every issue that would much rather scream, yell, and throw rocks than enter into prayerful times of discernment and discussion. This is incredibly frustrating for those of us who struggle with maintaining our evangelical faith and our social witness. I am glad that I serve within a denomination that doesn’t expect everyone to follow divine pronouncements from on high made by a few, influential leaders. Instead we enter into difficult times of discussion where we pray, listen, debate, practice holy conferencing, and strive to listen to the voice of God. Having these difficult discussions actually allows us to discover the truth at much deeper levels.
We Are Not Perfect!
The United Methodist Church is far from perfect. There are people that I love dearly and disagree with completely. There are times wihen the idea of locking 2,000 people in a convention center and feeding them a high carb diet and expecting them to make good theological decisions seems ludicrous. In the end, I love The United Methodist Church, I believe in the power of the Holy Spirit to help us overcome the “humanness” of our church and will guide us to continue to do all the good we can, in all the ways we can, wherever we can and to continue to proclaim the Gospel of Jesus Christ around the corner and around the world. This is my church, this is my family, and I’m staying!
The ideas, opinions, and reflections above are solely those of Marty J. Cauley and do not, necessarily reflect those of The United Methodist Church or The North Carolina Conference.