I’m in a spaceship!
I close my eyes, confident in my conclusion. But after just a few moments, I feel disgusted with such thinking. What in the world would I be doing in a spaceship?
I feel a hand on my arm. “How are you doing, Mark?” It is the woman I had seen earlier at the monitor. She looks familiar to me, but I don’t know who she is.
“Where am I?” I ask in exasperation. “Why are we in a spaceship?”
She’s neither amused nor upset by my question. “You’re in the hospital.”
My senses are still very dull, but not because it is the middle of the night and I am tired. It’s because I am stoned on pain medication. But I finally understand—the woman is my nurse. My eyes well up with tears as I remember this is a nightmare from which I cannot wake up.
I have stage IV cancer, and things have gone from bad to worse as the complications mount from my surgery.
As I lie there, completely inactive and having just awakened, my heart beats one hundred times per minute, which is a jogging pace for me. It’s been banging away nonstop like this since the surgery three weeks ago (and will continue for another four weeks).
I’m aware my internal organs no longer resemble the human design. It’s a marvel anything works, but it does. My surgeon explains he’s hit some snags in the “plumbing redesign.” The undamaged part of my pancreas is still healthy, which is unexpected for pancreatic cancer. However, sewing a healthy pancreas back onto the intestine is like sewing a banana to a condom. And sewing the Pixy Stix–size bile duct into place is an equally challenging task. I was warned that approximately 20 percent of Whipples develop a fistula (an intestinal leak) as a result, and I am a lucky winner.
In the days following my surgery, I could look down at my abdomen and see a neatly sewn pattern traced along the bottom of my entire rib cage. But not today. The fistula has allowed most of my abdominal cavity, from my ribs to my hip, to fill with bile and pancreatic fluids. Last week, the surgeon had to open all the stitches along the seventeen-inch-wide incision.
Now I look like a cut-open deer carcass.
“Are you going to put the stitches back in?” I ask.
“No,” the surgeon says. “It may be hard to grasp this idea, but your entire wound has to heal from the inside out—no stitches. It’s what we call an open wound.”
Telling me that this might be hard to grasp is an understatement. One section of the incision is big enough to allow two fists inside my abdomen. The muscle looks like ground hamburger, and it is bathed in a constant yellow ooze of digestive fluids that will require bandage changes every few hours or so—for the next fourteen weeks.
As I reach down to lift the bed sheet away from my abdomen, I can feel the tug of the tubes hooked to my right arm. I glance up at the four bags of fluid hanging from the IV stand. I cannot eat because my new plumbing can’t handle the pressure or the task of processing food. So two of the IV bags provide my only nutrition (total parenteral nutrition, or TPN).
A fifth tube runs to a pump of Dilaudid (morphine times ten), which I can control. It comes with a detonator-like button I hit with my thumb when the pain becomes too much, which is about once an hour.
One of the side effects of the pain medication is the worst cotton mouth I’ve ever experienced in my life. But even worse than that is the fact that I can’t drink anything, and I feel thirsty twenty-four hours a day. The only water I’m allowed is ice chips or a moist sponge to keep my lips from drying out. In fact, I wouldn’t be allowed to drink until day twenty.
I think about how long it takes for a small cut on my hand to heal, and then I look down at that big incision. “There’s no freakin’ way, man,” I whisper.
* * *
The weeks that preceded and followed this single day were pure torture. The heavy narcotics, massive abdominal wound, drains, and lack of nutrition made it difficult to get out of bed, let alone walk, pee, or pass gas.
Every day, I would stand and plead with God for that pee to flow, because a nurse with a catheter was the only alternative if it didn’t. You can imagine how painful it might be to have a catheter pushed up my urethra three times a day to drain the bladder.
“Can’t you just leave the thing in there instead of cramming it in and out every day?” I begged the nurse.
“Not if you ever want to be able to pee again.”
To keep my digestive system moving, prevent blood clots, and maintain any kind of muscle tone in my body, I was required to walk. I couldn’t physically do it as often as I needed to, but I tried my best. I shuffled in slow motion for a couple hundred feet or so, one painful step at a time.
My inactivity and “sleepy” organs made it harder for fluids to drain, which resulted in about thirty-five pounds of water-weight gain. My legs and feet were swollen beyond recognition, and my testicles swelled to the size of oranges. (Noah, you laughingly referred to me as “Big Daddy” after you accidentally caught a glimpse when I climbed into bed.)
The fluid retention also restricted my breathing, which led to fluid buildup on my lungs, all of which made it even harder to walk, sleep, or even think straight. I felt like a bloated deer tick. “Can’t you just drain the fluid off the lungs?” I asked.
The answer was no; the procedure was too risky. “It would be better if you worked harder with those deep-breathing exercises ten times per day,” I was told.
I laughed. I could barely perform them twice per day. Doctors eventually drained a two-liter bottle of fluid out of my lungs.
* * *
When you’re scared, you go with what you know. As a twenty-one-year career soldier and officer, I initially recoiled at the idea of using words like battle, war, or any other military term to describe the cancer experience. There’s a “war” on everything these days—drugs, Christmas, obesity, illiteracy, poverty, terror—and we never seem to win.
I also didn’t like the idea that a war reference implied an enemy and losers. Cancer wasn’t some foreign invader. It was the result of my own faulty immune system, and I sure wasn’t going to consider myself the enemy or a loser because of it. Plus, I had seen too many soldiers fight and lose real battles in combat with a real enemy. It just didn’t seem right to make the comparison.
And yet, my resistance to using combat-related terms was short-lived. Nearly everyone who spoke to me used the metaphor, and the reasons made sense as I gained more perspective from my own disease.
Cancer isn’t something that pops, breaks, wears out, or busts loose in your body. It is a war—a murderous civil war within the body. I found that families with cancer needed the metaphor, because terminal diseases like mine tap into our worst nightmares about life—the idea of a slow death and eventually a painful, miserable existence for survivors and their caregivers.
The metaphor provided a rallying point for families desperately trying to cope. And as a soldier, war-fighting language was my language.
I was once asked to describe the difference between fighting cancer and fighting in combat. Well, in combat there are bullets and bombs. But the only real difference with cancer is the scenery and the fighters, because with cancer you still have to face both an enemy and your own fears. You still have to face death. You still have to endure misery and deprivation, both trivial and severe. And you still have to sit down with family and explain the blunt reality of the possibilities.
So, if everyone characterizes cancer as civil war, and you heard that one million of your own fellow citizens (cancer cells) were moving across the country, indiscriminately killing everyone in their path, whom would you categorize as your “friendly forces” in the fight?
Answer: Everyone who’s not with them.
In army-speak, my friendly forces consist of three “branches”—my body, my friends and family, and my doctors.
The only physical fighter in that lineup is my body. Other people can help, but the actual fighting has to be done by the body. In July 2010, the massing enemy force wasn’t at my border; the cancer
already had me outflanked, outgunned, and surrounded. The engine and fuel-processing station (the digestive tract) for my entire fighting force was already destroyed. My body possessed a strong heart, mind, lungs, and muscles, but without fuel, these were just accessories. They were being robbed of their combat capability by the day.
The friends-and-family branch of my army grew by about one thousand “enlistments” in just one week via my online journal.* These troops were long in motivation and spiritual support, but they could not offer any practical fighting capability against the cancer.
The last remaining branch of my army, and the one that possessed the most reason for optimism, was a small team of special forces (my medical doctors) armed with the deadliest, most advanced weapons known to human biology. The problem:
• doctors’ weapons kill just as indiscriminately as does the cancer;
• the confusion and uncertainty of “the fog of war” is just as disorienting for doctors as it is for soldiers;
• doctors’ solutions are sometimes entirely ineffective, despite a breathtaking swath of destruction to the cancer.
Any questions?
* * *
Folks who wanted to support me clearly struggled with what to say outside of “You can beat this!” and “I’ll pray for you!” It forced me to ask myself some questions about what kind of support I wanted. I am taking this on like a soldier, but does that mean I want to be told I will be victorious, no matter what? I laugh a lot, but is there anything to laugh about here? I am a spiritual person, but will the strength of my faith dictate my survival?
I decided to tell people my thoughts about each of these subjects and suggest how they could help with each—a task I now consider a responsibility of those who are severely ill. Here’s what I told them:
Help me keep it real by talking honestly with me about what I can plainly see with my own two eyes. Don’t put me in the grave, but don’t make boastful claims about my impending victory, either. Just talk or sit with me.
With regard to humor, I laugh at myself and at life. This is what I was like before the cancer, and I have no plans to change now.
When it comes to religion—which was by far the largest offer of support—please respect my beliefs enough not to impose yours. God is my inspiration for fighting and living, but I don’t see him as a cosmic bellhop who’s going to come loosen my bowels when I can’t poop or convince my immune system to start recognizing cancer cells. Pray with me, but please don’t tell me you prayed for God to do any work for me or for the doctors. I’m satisfied with the raw materials he gave us at conception and the inspiration he has provided since. That is miraculous enough.
* * *
There came a time when bold talk surrendered to sober reality about the journey and the work that lay ahead. Some thoughts I shared with very few people. Stage IV cancer is stage IV cancer. There’s no sugarcoating that, no matter how confident and positive a person seems on the outside.
Modern medicine gave me plenty of hope, but I also knew I needed to be honest with myself about the undeniable mortality of my situation. I had known too many people who had gained little or nothing in their big fights: they had spent the next six to eighteen months losing their dignity and most of their quality of life from surgical complications and had then died a slow and painful death.
Some friends and family considered this unhealthy thinking. But to me, this is what “strong enough to know you are weak” and “facing the stress and spur of challenge” really mean. I felt I needed to think long and hard about how I was going to balance my actions with my words.
My reflections and observations didn’t sap my courage; they just forced me to consider the possibilities and stay focused on what I needed to do, as opposed to what I might dare to hope for. The fear of such outcomes motivated me to get smart on the complications following my surgery, to brace myself mentally for things to get worse, to learn what questions to ask, to review and fully acknowledge my own responsibilities in the effort, and to help my family seek out the same perspective.
Examples of these considerations in action? I insisted on packing the open cavity in my abdomen with gauze and changed all of my own bandages. I demanded to know what medicines were being pumped into me every day. I read and I learned as much as I could so I could make independent judgments about all of it—thicker, thinner, more, less, or not at all.
In order to personalize the fight, I gave names to my wounds that I still use today. Buford was the open wound. Bullah was the drainage field inside my abdomen and the associated incision at my hip. I eventually used the term Buford as shorthand for the entire ordeal. Buford evolved. Our understanding of hardships evolves, too.
When I could finally start eating and my “hot” food arrived cold day after day, I didn’t just complain; I asked to see the hospital’s kitchen manager and passionately pleaded for better service for all of us—and he delivered.
When members of my surgical team talked down to me or dismissed my explanations of what I was experiencing, I firmly reminded them I was part of the team.
Action didn’t always come easy, and that’s what teammates are for. On August 27, Kristin showed up with a towel and some soap and encouraged me to tackle my greatest fear—the shower. My first in twenty-five days. I dreaded the idea of the pain that could come from rushing water through my open wounds.
I could barely lift my arms, so I just stood there while Kristin gently washed every inch of me with a small cloth. “Okay, lift your leg for me now.” I’d imagined a moment like this might come for one of us sometime during our lives, but not now.
She patted me dry when we were done, peeled sheets of dead skin from my legs and ankles (the result of the swelling), rubbed lotion on my legs and feet, and dressed me in a clean gown. Then she crawled into my small bed for the first time since the surgery, and we cuddled. I never felt so secure and comforted in all my life.
It was our sixteenth wedding anniversary.
* * *
In basic training, my drill sergeant asked me if I thought I could make it through a rigorous obstacle course. “I hope so,” I said.
“I’ll tell you what, Private,” he sneered. “You go ahead and hope in one hand and crap in the other, and then tell me which one fills up first.”
Since I’ve commanded my own audiences, I’ve used a more polite way of demonstrating the power that actions can have over words. I ask them to make an “OK” sign with their forefinger and thumb and then tell them to place the circle on their chin. Ninety percent of the participants instead place the OK sign on their cheek.
Why? Because I place my own OK sign on my cheek while I explain the instruction.
People see what I do and ignore what I say. As people usually do. Like all lives, mine is filled with examples of the power of actions over words—lessons that don’t come from instruction manuals.
When I was in JROTC some twenty-eight years ago, a high-ranking senior classman with long hair and a messy uniform didn’t wield much influence with lesser-ranked cadets, no matter how competent and motivated he was.
In basic training, we had a bright and confident West Point lieutenant who faced the same dilemma. He could talk articulately and with passion about fitness, soldiering, and leadership. Yet his words were overshadowed by his obesity, and he never seemed to realize it.
It wasn’t just hypocrisy that spoke volumes. I noted many drill sergeants ate before their soldiers at mealtime. Considering their workload, no one would have faulted them for doing so. But Drill Sergeant Paradeis ate last. “When I’m done, you’re done,” he would yell daily. How could I complain about how little time I had to eat when this guy had less time than me? When we did physical training, he did it with us—as opposed to standing over us, barking orders. When we went for a six-mile road march, he went the full distance—as opposed to meeting us at the finish line. His simple acts made me want to follow him.
The influence of those decades-old memories informed my b
ehavior throughout my life: I eat last, and I don’t ask anyone to do something I wouldn’t do myself.
* * *
Nothing underscores the raw simplicity of actions and words like parents and parenting—or, really, any interaction between adults and children. There’s not much sense arguing with a ten-year-old who calls you out when your actions don’t match your words. You’ve kept me humble in this regard, boys, and your kids will do the same, if you let them.
I judged my parents’ actions, too. My mom was all nurturer, and her actions as parent were the complete opposite of Dad’s. She prided herself on being there physically for us all the time and showered us with tangible expressions of affection. But when it came to consequences, she mostly just threatened. She would call out for my dad when she lost her patience, but then immediately regret the fury she had unleashed.
What my mom lacked in authority because of her familiarity, she gained in trust and confidence. We had mother-son talks—lots of them. Conversations with her were the closest thing I had to a “Dear Diary.” I felt free to share my emotions, even if I knew they were irrational. I was a “mama’s boy,” which I was less embarrassed about once I learned that Generals Patton, MacArthur, and Eisenhower all shared the same descriptor.
Love—an emotion expressed with or for people you always want to be around—came easy with Mom.
* * *
Love was not a word I would have associated with my dad when I was young.
How my brothers and I didn’t end up murdered is beyond me. All indications are that we deserved it. I once heard my dad yell that we owed him at least fifteen thousand dollars for all the doors, vehicle interiors, tools, and home furnishings we damaged or destroyed.
When I was eight or nine, something snapped inside my dad that showed us he was all done with words. I don’t remember what triggered it, but I sure remember what happened.
In our Minnesota home, there was no shortage of hockey sticks. He grabbed one, cut off an eighteen-inch section, sat down at the kitchen table, and carved it into the instrument we knew forever after as “the Stick.” He even engraved our names on it—Mike, Mark, Chris—for added effect.
Tell My Sons: A Father's Last Letters Page 5