Chemoland

For me living with cancer means living with chemotherapy.  In other words, chemotherapy means living.  People ask me all the time how much longer I have to take chemo, and the answer is…well, I guess as long as I want to stick around.  So every other Monday I pack up my chemo bag and my mother and head off to my treatment center (a place I fondly refer to as Chemoland).  It’s a magical place not unlike the Hotel California; I suppose you can check out anytime you like, but…well, you know the rest. 

 

 

My round begins with a five  hour stint at Chemoland getting every anti-nausea drug known to man, a number of rescue drugs to protect any organ I’d like to keep functioning, and then a push (read: giant syringe full) of my particular cocktail of chemo, called folfiri. It’s also known around the cancer campsites as 5FU.  (I like that name better.  I suppose it’s because I like to believe it means 5 “F” yous…right to cancer.)  After my push, I take an infusion of chemo home with me in what looks like a little box that distributes the drug through a tube connected to a needle that inserts into a port in my chest. (Yeah, a two-inch needle that sticks into my chest and is held in place by tape. That’s right, tape.) 
 

By Wednesday afternoon all the FUs are inside me and hopefully doing their jobs. So I head back to Chemoland to get disconnected and to get another infusion (which takes about two hours) and a $4,000 shot to keep my white blood cell count up.  And that’s it!  One round complete. Then I wait 12 days, rinse, and repeat.  I’ll admit that before I started my treatment I found the idea of chemotherapy…a little bit intriguing.  I think that’s the way we feel about anything that we only experience through TV and movies.  I wondered what it would feel like, how I would handle it, I mean…would it be like the movies? 

 

 

This week I had my 36^th round of chemo. I don’t wonder those things anymore.  Chemo sucks.  But, in the words of a greeting card my sister Laura once sent me, “But if it sucks the cancer right out of you…then, yeah chemo!”  I’m not sure I’ll ever get there exactly…but chemo, my treatment center, and the people I have found there have become part of the rhythm of my life now.  I guess I wanted to share with you all the things that go on in a round of chemo because I want to tell you that these things…these statistic-like things…are the least of the things that go on in a round of chemo.

 

 

When I started going to Chemoland I hated it.  I hated walking into a room in which I immediately brought the median age down by three decades.  I hated the lack of privacy, sitting in a large room with twenty-odd other people.  I hated hearing those people talk about their grandchildren.  I hated that I was jealous of them having lived long enough to have grandchildren.  I hated watching all those people shuffle around with their IV poles dragging along, as if those poles were the only things anchoring them to life in this world.  I hated that I felt like I was at a casting call for zombie extras on The Walking Dead!  But most of all I hated that I was now one of them…because I didn’t want any part of that place.  It was too overwhelming.

 

 

But at some point, I’m not even sure when, I stopped eavesdropping on the lives around me and started engaging those who were fighting to keep them.  And eventually I started to see something else too.  I saw God in this world… the incarnation of Christ in the suffering around me.  Dietrich Bonhoeffer wrote once about this kind of engagement with the world: “We throw ourselves completely into the arms of God, taking seriously, not our own suffering, but those of God in the world—watching with Christ in Gethsemane.”  Watching with Christ…and in that place my understanding shifted.  For in that moment, I wasn’t hopeful that God was present to the suffering in this world; instead, I was present to God’s suffering in this world…and it was manifested for me in those whom I have been honored to walk with, even if we do walk around dragging IV poles.

 

 

These days at Chemoland I usually hang with my crew, a group of bikers as a matter of fact.  (We have great intentions of starting our own biker gang: The Chemo Riders.)  And I’m as invested in their lives and their struggles as I am my own.  But I also find myself hanging with  parishioners, previously evaded grandparents, and Chemo Riders alike.  I guess I expected to eventually “settle in” at Chemoland.  But what I never expected when I first walked into that treatment center was that I would eventually be ministering from those chairs.  I suppose it started as I found myself receiving treatment next to those very same parishioners I was ministering to outside of Chemoland.  And it just kind of grew from there.
 

I remember reading a book in seminary called The Wounded Healer, but it didn’t exactly prepare me for anything like this.  It felt natural for me to minister to my own parishioners, but as time went by I found myself ministering to people who have never stepped inside my church.  I suppose in a way cancer has pushed out the walls of my church to include Chemoland.  It’s redefined for me what it means to walk with those to whom I minister…because ministering from Chemoland is a whole new ballgame.  Because it’s both a place of vulnerability and authenticity.  It’s a place where there’s no time to dance around the questions that we’re often too embarrassed or uncomfortable to face.  It’s where the matters of life and death and eternity become, well, the only matters.  It’s where I find myself asking the same questions that I am asked.  And, ultimately, it’s where I do my best to watch with Christ in Gethsemane.

A Sad, Sad Case

 

I have a confession to make.  I don’t understand how an atom works.  It’s true!  I mean, I understand the definitions of all the words involved in an explanation of this basic unit of a chemical element. Even so, it doesn’t make sense in my head.  I, therefore, also blame my lack of skill in calculus, physics, or any kind of chemistry…on the fact that I can’t wrap my head around the atom.

 

Do you know what I do understand?  Words.  That’s what I’m good at.  I like to think that if I can claim any kind of natural skills in this world, those skills can be found in the language arts. But since my diagnosis, I feel as if my innate comprehension of the English language has somehow escaped me.  I feel like I’m back in 7^th grade trying to wrap my head around the atom.

 

You see, I keep finding myself in these situations where I am at an utter loss for words.  And, in spite of my better efforts, I’m repeatedly and utterly shocked by the ways in which people respond to the revelation that I do indeed…have cancer. 

 

Let’s start with doctors.  Let’s face it, they’re an odd breed.  They see in black and white.  They have to keep a certain professional distance to maintain their own mental health.  And in the end, they’re just looking at numbers and odds.  That’s something I understand intellectually, but to hear my surgeon say the following is something altogether different: “So, I presented your case to the tumor board this past week, and they agree…you’re a sad, sad case.”

 

Ummm, thanks?  I mean, how does one respond to such a statement?  I daresay that even Miss Manners would have been hard pressed.  

 

Or there was the time when my oncologist asked my mother (while standing in front of me, mind you), “You have other children, right? Yes….good, that is good.”  I have to say that at no other time have I been more tempted to simply let my inner monologue run free. “Hi, remember me? You do realize that I’m still currently alive, and at the moment I’m standing in front of you…right?”

 

Or how about just the average Joes— when people learn about my cancer and look at me inelegantly, saying, “Oh, I’m sorry.”  I’ve found that this is the toughest one yet.  Maybe because I hear it a lot, or maybe because I do believe that there is sincerity behind this statement.  After all, I do think people are sorry.  Which is difficult enough to deal with.  But more often I think they just don’t know what else to say.  They’re uncomfortable.  And they immediately start wondering if perhaps they’re unknowingly riddled with cancer…and all of this translates into some kind of half apology/half onslaught of additional awkward-yet-cheerily-posed questions:

 

“Hope they caught it early!”  (Well, they didn’t, sooo….)

 

“But you’re gonna be fine, right?”  (Well it’s Stage IV, incurable cancer. It’s not cancer, it’s CANCER….sooo…)

 

“Then you’re like, what, in remission?”  (Um no, I’m in a full-on battle….soooo…)

 

“This is awful, what am I gonna do?!?”  (Um, I don’t know what you’re going to do, but I guess I’m gonna go fill my body with toxic chemicals that I hope will kill the cancer before it kills me…sooo…)

 

Then again, perhaps I do still have some kind of control over my inner monologue.  Because in the end when people tell me they’re sorry, I usually respond by saying “there’s nothing to be sorry about. It’s just the way life is.  It’s sucky…but true.”

 

Yep, I have a list of ridiculous things that people have said to me…and they weigh on my heart.  It’s sucky…but true.   It’s hard to hear the pessimism of doctors over and over again.  It’s hard to hear the statistics.  It’s hard to keep my life in focus.

 

But, then again, I have also had friends and family, parishioners and strangers, loved ones and co-workers who have eased this weight with other words…and sometimes it’s even the words that aren’t spoken that ease the weight the most. 

 

I have a mother who comes and sits with me through every single round of chemo.  We sit there playing cards, hour after hour…Gin Rummy is our game.  She also beats me at every single game! She has no pity.  (And I have cancer, for heaven’s sake; you’d think she could throw a game here or there!)  I have a mother who doesn’t feel bad when I lose at cards, because I also have a mother who tells me that cancer is a win-win situation.

 

I have two amazing sisters.  One who calls me from Texas every single day…no matter.  Just to see how I am, just to show her support, just to make me feel like she doesn’t live quite so far away.

 

And a sister who randomly cooks me soups she makes up the recipes for…and then freezes them in little individual containers before delivering them to me.  One who listens to me wallow, but who also doesn’t let me wallow too long.

 

I have a dad who tells me how proud he is of me.

 

I have a friend who tells me “who is man to call something incurable?”  I like that.

 

I have parishioners who tell me that I am a wonderful witness.  I don’t really know how to take that, but nonetheless.

 

I have a best friend who refuses to let cancer become the center of our relationship.  It’s not. We are.

 

I have a spiritual director who tells me that our time together is sacred to her.

 

I have a hetero-life partner (unless we find men soon…but my stock isn’t exactly going up these days) who lets me share my neurotic thought processes with her.  I try not to spend every second of the day thinking about how I feel, but once your diagnosis of “stomach flu” turns out to be not so much the stomach flu….it’s hard to move past that kind of thing.  Once I told her about my concerns regarding new pains that could be cancer.  (After all, every pain in my body could be suspicious metastatic activity!)  She offered to come over and punch me: “At least then, you’ll know that that pain…is definitely not from cancer.”

 

I have a Quadrilateral of Awesomeness.  Three friends from seminary who, along with me, make up a kind of Justice League-like team of pastoral care.

 

I have a Great Cloud of Witnesses…my Triumvirate, if you will, to whom I look for words of advice and solidarity along this path: Dietrich Bonhoeffer, Oscar Romero, and…well…Freddie Mercury.

 

I’ve had random people I’ve never met before walk up to me on the streets of Massillon, ask if I’m the pastor at Faith…and when I respond that I am, they tell me that they’ve been praying for me.

 

I have a friend with whom I once shared my concerns regarding the centeredness of my belly button. Since my abdominal surgery, I feel like it’s…just a bit off to the side now.  Odd.  My friend responded by asking, “Is your belly button still in the front? Well then…” 

 

Well then indeed.  Just a few of the folks who have chosen to bear some of this weight with me. To walk with me…

 

And yet there is another whose words not only help to bear the weight of the words in this world, but who actually takes on the entirety of the weight.  Sometimes I forget in the massive onslaught of words I hear from the doctors—and in the statistics—that God is speaking too.  Then again, sometimes, maybe I just forget to listen.

 

For I have a God who is telling me profound things.  I have a God who tells me that I am not alone. And I have a God who promises to suffer with me in this world.

 

God has called me to service in this world and shown me again and again that it is not the cure for cancer that I am called to seek.

 

I seek God.

 

Now don’t get me wrong, I’m not saying it wouldn’t be nice to stumble over the cure for cancer along the way…but more important, I pray for the strength and the courage to make the journey.

 

Strength and courage.

 

It’s a different way to view life.  But it’s the life I’m living.  And while most days of my life now do bring with them a certain number of unknowns…I am sure of a few things.

 

My belly button is indeed still in the front.  And I’m not going to die from cancer today.

 

 

DO YOU WANT TO LIVE?!?

I was two days into my non-elective hospital stay when I was shocked awake by a nurse screaming this question in the middle of the night. Thankfully, she wasn’t speaking/yelling at me…but I remember thinking that I had better have my answer ready, just in case my interrogation was next. Do you want to live? Well, yes! Yes, of course, I do!  After all, I had just turned 34.  I had just become an ordained pastor in the one true, holy, catholic, and apostolic church.  I had work to do.  Heck, I had life to do. Not only did I want to live, I felt like I needed to live. So yes, extremely vocal nurse person, I was ready for your question!

Turns out that it was a solo inquisition of the elderly man next door who refused to keep on his oxygen mask. Then again…it turns out, I’ve found myself answering this question a number of times and in a number of different ways over the last year.  I suppose it’s a year and a bit since my surgeon told me I have Stage IV colon cancer.  Since they told me all how very sorry they were, they are, or they will be…I suppose. A year and a bit since I found out exactly how annoyed I get when I even hear the world incurable. 

You see, I had been having stomach pain, but I had also recently spent a year living in Mexico and a few weeks travelling through  El Salvador.  And since graduation from seminary, interviews with churches, and ordination was on the horizon, it was the general consensus that I was stressed (after all, the very first words of the ordination vows I would be taking begin with the words, “Before Almighty God to whom you must give account…!”) and/or I had picked up some kind of evil stomach bug from my adventurous travels (maybe I really shouldn’t have shared that bottle of mezcal with that hitchhiker in Oaxaca, hmmm). 

Regardless, every doctor I saw asked me my age, and when they realized I wasn’t in the “risk demographic,” they moved on to a diagnosis that didn’t begin with a “can” and end with a “cer.”  I couldn’t keep food down and I had nearly constant stomach pain, but when I suggested the possibility of cancer to my general practitioner, she rolled her eyes with great frustration, told me it was NOT cancer, and also demanded that I stop googling my symptoms.  Unfortunately, ordination and a new job didn’t decrease my stress…or my stomach pain. A few weeks later I found myself at immediate care in the middle of the night (driven there by the church secretary, no less).  Immediate care sent me to the ER and the ER asked me my age…and diagnosed me with the stomach flu. Well. Good then. Except that a week later…I was still throwing up.

Ultrasounds and CAT scans were now on the menu. I’d never had a CAT scan, but I kind of found it fascinating…like an amusement park ride at the end of which they tell you your future.  A very cheery young woman called me a few days later and informed me they only saw some “swelling” in my colon and that a colonoscopy was ordered by the aforementioned eye rolling/google controlling doctor.  A colonoscopy. Sounded great. I signed up right away, and on October 26, 2011 (less than three months after my ordination), I had my first colonoscopy. Strangely, for this procedure they didn’t give me quite enough of the good stuff. So I was pretty clear headed and awake when “extra doctors” emerged from seemingly nowhere to observe and make numerous acclamations of “oh yeah, yep….there it is.” Well, that didn’t sound good. By the time they rolled me back and the doctor came to see me I was prepared for not great news. A tumor the size of a grapefruit was almost completely closing off my colon.  Of course, there was always a chance that it was benign, but “this is cancer,” the doctor said.  Talk about a shock. My dad was so shocked he had to lie down on the bed next to mine!  I can’t even imagine what must have been going through his head—my poor dad who had to watch his father die from colon cancer would now have to watch his daughter battle the same disease.  I didn’t quite know how to react. So I threw up in the bathroom. It seemed like an appropriate response.

A week later I found myself in the office of my new surgeon, who was telling me not only that I did indeed have cancer, but that it might also already be incurable. Oh, and he recited a laundry list of ways in which I could cease living seemingly spontaneously, not to mention during the surgery. He also informed me that he thought the tumor was the size of a mango. Maybe a small papaya. I didn’t know what was going on with the fruit in my abdomen, but I didn’t like it one bit. Not to mention I couldn’t eat for weeks because nothing could get past the onslaught of fruit in my colon!

But eventually surgery was upon me. Three hours later I had a foot less of my colon (I really thought those semi-colon jokes would have gotten more mileage), 34 staples holding my stomach together, and a doctor who was beginning the onslaughts of “I’m sorry’s” which seemed to be centered around phrases like “metastatic” and “we left disease behind” and “Stage IV” and “aggressive” and “three to six months.”  That last one wasn’t said to me; my family bore the burden of that opinion. If chemo doesn’t work, how long? Three to six months.

So did I want to live? Yes I did! Yes I do. Because while it’s true that I do have Stage IV cancer (and there is no Stage V)…I DO know that there is a place beyond Stage IV, and that’s where I find myself today—567 days past diagnosis.

It’s where I find myself. It’s where I find my ministry. And, sure enough, it’s where I find God too.