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!

Why I Keep Doing Stuff...

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.

Tangible Results

            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!”

Focus

            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.

Joy

            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:

Live Passionately!

Marty

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.

Why I Gave Up on Chemo…at least for the summer.

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.

Live Passionately,

Marty

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: 

https://youtu.be/PkrWwG5Q7wg