Being a Patient Patient is Trying my Patience

“I can’t help but remember and am depressed. I call this to mind—therefore I will wait. Certainly the faithful love of the Lord hasn’t ended; certainly God’s compassion isn’t through! They are renewed every morning. Great is your faithfulness.” Lamentations 3:21-23

Dealing with a long-term illness is a lot about waiting. Waiting for scans. Waiting in waiting rooms. Waiting on results. It is a never-ending cycle of waiting. Usually I’m pretty good at this waiting game. I’ve become better over the last five years, especially since I wasn’t expected to last this long with my original prognosis. Now I’m waiting again.

If we have spoken in the last two weeks I may have seemed distracted. I am having serious focus issues. I am distracted even more than normal because two weeks ago I found out that the treatment I’ve been waiting for, PRRT (info in links below), is finally available at the Duke Cancer Center. This highly targeted therapy has been standard practice in Europe and Australia for years, and in January it finally received FDA approval. It has taken since January for it to go through the process of getting approved as a treatment that will be covered by insurance. Now, eight months later, it is finally becoming an option, eventually.

On August 16, 2018 when I had my end of summer scans and oncologist appointment, my doctor let me know that I could start the process to receive PRRT this fall. The first step is a highly specialized scan (oh the joys of having a rare disease) that is currently only available in North Carolina at UNC (it seems Duke had to send their machine back to Germany for repairs??). Since these two research hospitals work together well, it shouldn’t be a problem to get insurance approval and have UNC call me to schedule the scan. That was two weeks ago, or fourteen days, or 336 hours, or 20,160 minutes, but whose counting?

The treatment is a rather aggressive infusion radiation therapy that will require ten to fourteen days of contact isolation after every treatment, and I may receive three to five treatments. Because of the contact isolation issue, I have been reluctant to make any plans for the fall. I have turned down several speaking requests since, if it happens on one of the weeks I’m radioactive, I don’t want to expose an entire congregation to my personal microwaves. I also don’t know how I’m going to react to the treatment. Some of my “cancer friends” who have had it bounced back really quickly, others had some serious fatigue. “Therefore I wait…”

The people of God should be experts at waiting by now. From their time in Egypt waiting for a deliverer, to their time in the wilderness, and even now as we wait on Christ’s return we wait. This time of waiting has taught me a few things. First, waiting is an active vocation, not a passive one. Secondly, waiting doesn’t mean God isn’t working. Lastly, waiting clarifies and intensifies my motivations.

Waiting is active. When I read the Isaiah 40 passage, “Those that wait upon the Lord…” recently I began to realize that waiting could be an active verb. It is more like waiting tables in a bustling diner than sitting around twiddling our thumbs hoping for the best to happen. While we might not be able to do what we want to do, we can do something while we wait to do what is next. The world doesn’t stop while we wait, and neither should we!

Waiting doesn’t mean God isn’t working. It is so easy to allow waiting to devolve into worrying. Even in my case, I know (because I’m regularly annoying them) that my doctor and her PA are nudging the process forward as fast as they can. While they can’t control the billing department or make Blue Cross Blue Shield work any faster (I’m not sure anyone can), they are advocating on my behalf. I also believe that God is working on me, preparing me for what comes next.

Lastly, waiting clarifies and intensifies my motivations. We have all said, “absence makes the heart grow fonder.” This is a similar idea. This waiting has caused me to seriously begin to reflect on how I will order my life if this procedure is effective and it adds another decade or more to my life expectancy. I’ve been living the past years trusting in God and also uncertain of how much time I had left. This could open the door to a significantly better prognosis. What is God calling me to for the new and improved “long-term?” What new rhythms do I want to reintroduce into my life? How can I gather in intentional community more regularly? All of these thoughts have been part of my prayer and thought life for the first time in five years. I have a renewed since of what is possible!

Meanwhile I’m still waiting. I appreciate your prayers. Please pray that I will continue to actively wait, that I will trust that God is still working, and that God will continue to help me get clarity and intensity about the next chapter God is calling me into. I will keep you posted, I guess you’ll just have to wait and see with me.

Brief video explaining the basics of PRRT

I Thought I'd Be Dead By Now...

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 my “five year jar” and then have to start putting them back in I guess. Meanwhile I’m trying to figure out how to keep living and making it count.

When I got my diagnosis of stage IV cancer in July 2013 my prognosis was not particularly good. Actually it was bad, like go and make your final arrangements bad. Stage IV means that you have distant metastasis. That means that no matter where the cancer started it has spread far and wide, usually to other vital organs. In my case it is fully involved in liver metastases, as well as some other places. What we didn't know until I had several more tests was that I had neuroendocrine cancer. Neuroendocrine cancer, or NETS, is slow-growing and moderately controllable with proper treatment. So every other week I spend a half a day or more with my friends at the Duke Cancer Center to receive an infusion (drugs pumped directly into your veins through a port permanently installed in my chest). Additionally, every twenty-eight days I receive a deep subcutaneous monthly

shot (yes it hurts). Every three months or so I go for a set of scans to tell me one of three things: either cancer has gotten worse; it has gotten better; or it has stayed the same.

The good news is that the treatment is basically working. With the exception of a few setbacks over the last four and a half years requiring a change in chemo, the treatment is holding the cancer at bay. It is not really getting any better, but it isn’t growing by much either. My marker tumors, the ones they measure for a baseline, usually grow by just a few millimeters every few months. This doesn’t seem like much until you multiply it over time. Just this week I realized that all of my tumors have more than doubled in size since July 2013.

The treatments are not without some side effects. There is the fatigue you get when you pour a bunch of cancer inhibiting chemicals into your body every two weeks. There is the loss of some muscle mass, delightfully called cancer wasting, that occurs when you battle this kind of illness. There is always the shadow of depression that hangs around the edges as you realize all the things you can't do. There is a cost.

Nobody really tells you the how much it costs to survive. With my first treatment every January I am billed for my annual maximum out-of-pocket for my health insurance. Then it takes me the next few months to pay that off. Prior to having cancer we had a great house in the mountains of North Carolina. The back porch overlooked the Pisgah National Forest. In the fall you could smell the crisp autumn leaves and feel the coolness of winter approaching. In the winter the stars were so clear and so close you thought you could touch them. In the spring, the mountains burst alive with color in celebration of new life. When the cost of treatment began to set in, we realized that we couldn't keep the house in the mountains and pay for cancer treatment. Cancer treatment won. We sold the house and with it our dreams of retiring in the mountains.

Don't get me wrong. I am one of the lucky ones. I have good health insurance, an understanding employer, and a job that is flexible enough to allow me to be gone every other Friday for cancer treatment. I have a supportive spouse. We have the income to pay for the treatments without causing complete financial devastation. I've sat in the waiting room at the Duke Cancer Center many times and heard stories of families on the brink of financial collapse due to the cost of cancer. And that is just the financial cost.

Cancer breaks you. It also breaks the people who love you. There is an emotional and psychological cost that goes far beyond the financial one. You simultaneously carry with you a sense of hopefulness and the reality that the struggle will never be over until it is finally over. When you lay in the MRI machine or the CT scanner every few months you wonder if this will be the time when things go very badly. Sometimes even hearing good news is more like waiting for the other shoe to drop than a reprieve.

Over the next few months, I am going to return to blogging. This time it will be about reflections of taking the long way home. Realizing that the journey that you thought was going to be brief and intense is actually a long, slow climb. I am going to reflect on the great blessings, and some of the struggles. I am going to talk to other people who are taking similar journeys and hear what they have to say. I hope you'll stick around as we take the long way home.

Live Passionately,
Marty

Getting to Know The Candidates

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, digital copy of my book. It can be read on the Kindle App on your phone, tablet, or computer.





Dying to go on Vacation: A journey of discovering life while facing death. - Kindle edition by Marty Cauley. Self-Help Kindle eBooks @ Amazon.com.

Raising the Ethical Bar

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 business, non-profit board, or community agency I have ever had the privilege to serve required the signing of a "conflict of interest policy" document. Recently I discovered that the Rocky Mount City Council members are not currently required to sign a binding conflict of interest document. A conflict of interest policy, rather than being a burden, is a great asset. It provides transparency for the leaders, helps identify conflicting motives for their actions, and increases trust of those who are served.

Transparency of processes is essential for democratic government to work. A recent Fast Company (link below) article revealed that people are drawn to places where transparency is practiced. Transparency allows for open and honest communication which increases morale. Transparency removes the suspicion that there is always something going on outside of the official meetings and processes where some one is striving to game the system. It allows for open, respectful, and thoughtful discussion. Transparency, essentially, creates a healthier community. I believe that is what we all want from our city and its leaders.

A wise man once said, "A man cannot serve two masters, he will love the one and hate the other." A clear and binding conflict of interest policy allows for decision makers to make it clear about their motives. It should be known during ever vote if anyone on the city council, their family, or any organization they represent will benefit directly or indirectly. It would then be appropriate for that councilperson to recuse themselves from all debate, discussion, and any voting about the item or issue. In the event that it is later discovered a conflict has occurred, appropriate action outlined in the agreement can be taken.

The primary reason a conflict of interest policy is essential is that it increases trust. After reading countless minutes and notes from city council meetings it seems that there is an undercurrent of mistrust. The first step in raising the ethical bar is to improve trust. The first step in improving trust is by inviting every council member to sign a clear, binding conflict of interest statement (similar to the one used by The Gates Foundation below).

Rocky Mount has incredible potential for growth and progress. After years of stagnation momentum and change are starting. All of this can be undone unless there is transparency and trust. It is time to raise the ethical bar for our leaders and require they sign a conflict of interest policy document as a first step.

Serving in government at any level is a privilege, not a right. Serving requires selfless dedication to the community and should never be used as a platform for personal gain.

Remember you do what you can do. I will do what I can do. Together we can change the world.

Live Passionately,
Marty

Sample Conflict of Interest Policy from The Gates Foundation
Fast Company Article on Transparency

Cities are Systems

"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 out waste. They consume and grow, using digestive, respiratory, and circulatory systems. And, like living things, cities can, with a nudge from citizens and

their leaders, evolve in directions that increase their prospects for survival."
Can a City be Sustainable, Gary Gardner

Strategically Rocky Mount is positioned ideally to flourish. Certainly it has had its difficulties with the loss of tobacco, textiles, and trains as primary economic drivers. Then with the movement of the banking industry away from our city, we suffered another loss of our identity. Meanwhile 45 minutes east of us are some of the fastest growing communities in North Carolina. What should be our strategy moving forward?

First we need to create a single, comprehensive, and actionable strategic plan for growth and development that incentivizes new investment. With the investment already being made in the Rocky Mount Mills by Capital Broadcasting and the coming investment by CSX of the $275 million rail to truck terminal, it is time to leverage these advances into even more opportunities for Rocky Mount to flourish.

All of this begins with systems. As Gardner points out, a city is similar to a living body. When our bodies are not functioning well we seek medical care and determine how to treat the illness or injury. Similarly a critical evaluation of every system must occur so that we can help make our city more appealing to both current residents and new citizens. Improved systems will also allow Rocky Mount to be competitive when recruiting new businesses and investment.

Rocky Mount needs to become a "yes we can" community where our elected officials and city employees are empowered and encouraged to find ways to say "Yes!"

I have been privileged to work with the Central City Revitalization Panel for the past several years. Part of that work included assisting with the creation of a marketing document to help others see the benefit of investing in Rocky Mount. Download the document that summarizes those benefits here.

What systems do you think need immediate attention in our city? Where are we doing it right? Please leave your comments below.

#Cauley4Council

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!

Cancerversary Lessons Year 3…

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.

Counter-Intuitive

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!

Live Passionately,
Marty

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!