Sue

I have a new, best friend. Her name is Sue. I have received a lot of gifts after my diagnosis with cancer. For example, I realized that although I consider myself a primarily lonely and isolated individual, I have a group of simply amazing friends. I never go through a chemo treatment alone. Someone is always here, even if they have to purchase expensive air fare, and even though being with me during chemo requires rubbing my feet and putting up with my horrible attitude. I’ll write more about all of these amazing people later, but for now, I want to write about Sue.

Sue is the best gift I’ve received as a cancer survivor. Sue and I met through an online chat website called www.colonclub.org I had posted several entries on the website and one day I received an email from someone named Sue. Sue explained to me that she had found my profile on the colonclub. She and I were diagnosed on the same day, and we had the same stage of colon cancer – Stage III. What was more, we were doing chemo on exactly the same days. Sue wanted to know if I wanted a penpal, someone to share experiences and insight with. I agreed happily, but at the time I still had no idea what a wonderful friendship would come of my fortuitous meeting with this new person.

Our emails to each other grew more frequent. On one occasion Sue sent me a picture of herself and her daughter. It was taken of them just a year or so ago, at a wine bar in Paris. When I looked at Sue’s image, I began to cry. She had such an amazing smile, and I could tell just from looking at her that this was someone who loved her life. She had a vitality in her 40-something smile that had always been missing from my own life. I cried because I worried that cancer had perhaps stolen this from her. I wanted to beat the living shit out of cancer, not because of what it had done to me, but because I feared that it had stolen something so precious from this woman, this wonderful person, and I feared that it would make her into a callous cynic like me. I would soon learn that Sue had not lost what I loved about her in this photo: she is a warrior times three, and she has enough vitality and love to save herself and me and hundreds of others.

Sue emails me every time I go through a treatment. She and I will ask each other, “have you made it through the other side yet?” We both know how chemo works. It knocks you down on all fours. And then, somehow, and quite magically, it’s over. The nausea and pain just end, like someone turning off a light switch. And then we go back to our normal lives: we run and spend time with family, and try to live a normal life for the 10 or so days we have until our next treatment. One time Sue emailed me to ask if I’d made it through, but I didn’t get back to her quickly enough. She emailed frantically: “are you okay? I’m worried.” She and I both worry about each other. We understand each other in ways that our families and friends simply cannot.

One time Sue asked me how I was doing “spiritually.” This was a tough question. I’m a Mormon by birth and raising, and an atheist by choice. I gave up God because I had come to think of him as a cruel authoritarian. Whenever I did pray in my life, it was usually in order to apologize – for some innocuous mistake or sin, for being gay, for whatever small infraction I had committed most recently. I prayed because I was afraid of God, because I didn’t want him to hurt me or someone I loved. And then, one day, I just quit talking to him altogether. I buried myself in intellectual life – and that became my God. But deep down, underneath, I still thought there was a God, and I assumed that he was mad as hell at me. So I figured that if I just left him alone, maybe “he” would just forget all about me. And after cancer, I assumed – unconsciously of course – that he hadn’t forgotten about me, and that now I was being punished for all of those suicidal thoughts and fantasies I had had as a teenager trying to come to terms with myself.

I explained most of this to Sue. And then she surprised me.

She explained to me that she had a different view of God. “I think God is just as pissed about our cancer as you and I are,” she wrote. She said that she did not think of God as an all-powerful being with the power to save and condemn. “There’s randomness in the universe, and I’m comfortable with that,” she wrote. When I read her email, it felt as if an enormous weight – 30 years worth of spiritual burden – had been lifted off of my shoulders. I felt as if, maybe, just maybe, I could once again have a spiritual life. Maybe, I thought, I could even pray – maybe it would be alright to do that.

One night I got home late and I checked my email. There was an email from Sue, only it was written by her daughter, Katie. Katie explained that Sue had to be taken to the Emergency Room. She had had cramps and pain for days. She had intestinal blockage due to some scar tissue that developed from her colectomy. She would have to have another entire surgery to remove the scar tissue. And she would have to delay her chemo treatments until she was well again. Sue – lying in a hospital bed somewhere in Rochester, New York, and in pain – had thought to have her daughter email ME. She was worried about ME!

I immediately began to weep in a way I have never cried before. I knew how terrifying this must be for her. When you are undergoing chemotherapy, your entire world becomes centered around FINISHING chemo. One’s biggest fear is that chemo might be interrupted, not only because this prolongs the horrors of chemotherapy, but because no matter how much we hate chemotherapy, we figure, at least it’s helping us, it’s killing the bad guys….so keep the stuff coming. I thought about how frightened she must be and my heart just split into a million pieces.

After reading Katie’s email, I cried and I went to my bedroom and I got down on my knees, just as I had done as a young Mormon before bedtime each night. And I prayed – for the first time in many years. I said, “please don’t let anything bad happen to Sue….make Sue well….and help her to be courageous and not afraid.” And I’m happy to report that Sue made a full recovery from her second major surgery, and she is now back on schedule for treatments. I don’t think this had anything to do with my prayers for her. It’s because Sue is, as I said, a real warrior. And it’s because that light in her smile that I saw in her picture still animates her. It animates me, too, most days. Cancer can take a lot of things from people, but it didn’t take that from her. And I figure, if there’s a God, it’s not some mean white-haired silverback living in she sky. God exists in the Spirit of people like Sue, and the strength they share with weaker people like me.

Sue and I have both applied to be colondar models. The colondar is a calendar put out by the colonclub to spread awareness about colon cancer in young people. We applied and insisted that we pose together. We hope we’ll get chosen, though we haven’t heard just yet.

Even if we do not get chosen, this much I know for certain. One of these days very soon I am going to fly to Rochester, New York so that I can meet Sue in person. And when I do, it’s going to be one of the best days of my life. We’re going to talk about her feminism, and her artwork (she’s a wonderful artist). We might go for a jog together or share a glass of wine (we both love wine). Or I might just sit there and look at her, if it doesn’t make her too uncomfortable, and contemplate all that she’s taught me and shared with me, the way she’s protected me in ways she’s probably unaware of.

A Little Something from my Cancer Diary

On September 23, 2005, I underwent a surgical procedure to remove a lump that I found in my abdomen. It was in an area of the colon called the “caecum.” I felt the lump during the late summer of 2005 while I was in bed one morning. I felt it again later that day while showering. I assumed that it was merely a strained muscle from my ab workouts at the gym, or one of those benign cysts they tell everyone about. During the time I awaited the surgery, all of my friends and family had little theories about what this lump might be: an absorbed twin, an ovary, or a clump of undigested Brie. My friends have colorful imaginations.

The surgery was the most traumatic experience of my entire life. No one can prepare you for surgery. You fall asleep and your entire body falls under the control of someone else. But the trauma begins even before that. While relaxing on some version of valium, the nurse and anesthesiologist asked me to roll over so they could insert the epidural. This requires sticking a long needle between your vertebrae. “Arch your back like a cat,” the anesthesiologist said with his Hindi accent. It doesn’t hurt, actually, but the thought of it alone (and the noise it makes going into your back, a short, quick “pop”) can make you sick to your stomach if you ponder it long enough.

When I awoke from surgery at St. Joseph’s Hospital in Elgin, Illinois, I had a tube going through my nose, down my throat and esophagous, all the way into my stomach. This “NG” tube was attached to a hose, and if I crossed my eyes, I could see the bile it was pumping from my stomach. I was, additionally, hooked up to oxygen, which made my throat very dry, compounding the discomfort of the NG tube, and making swallowing and salivating nearly impossible. I also had an IV, which fed me nutrients for the 2 days I was bed-ridden. I had a catheter, so I wouldn’t have to go to the bathroom. Of course, every nurse who walked by my bed managed to bump the hose of this catheter, sending shivers down my spine as I felt the strange sensation of my bladder twitching back and forth with the rhythm of the moving hose. This little game continued until I forbade everyone entering my room from approaching the side of the bed with the catheter hose on it. And I had a contraption hooked to my right index finger which constantly measured my pulse, blood pressure, and oxygen saturation. When my Oxygen saturation went below 90%, the machine would honk at me, obnoxiously, reminding me to breathe more deeply.

All of this nonsense was attached to me with surgical tape. I had tape on my back, from left hip to right hip, and all the way up my spine, securing the epidural. I had tape on the bandage which covered my incision. Tape on my hands securing the other gadgets that kept me alive and monitored. Now, what they don’t tell you is that the glue on surgical tape is toxic. It’s not like scotch tape. The stuff could eat through lead. And it burns. By the time I was finished, I had burns on my wrists, back, and stomach, all of which were far more tender the new 4.5 inch long incision which went from beneath my belly button to my right hip. Even now, 4 months later, I still have a scar on the left side of my stomach, not from the incision, but from the tape burn!

Finally, I had two leg-warmer-looking devices attached to my legs. They looked like something Jane Fonda would have worn during one of her aerobics exercise video tapes from the 1980s. Only my leg warmers were plugged in to an air pump. About every 10 seconds they would fill with air, and then release. Psshhhhh, fwump. Psshhhh, fwump. Every 10 seconds. Try sleeping through that.

None of this mattered to me, because I figured once I was walking again, and once my little stomach started processing food again, I would walk out of the hospital and go back to my old life, with no changes.

That changed very quickly when, on Tuesday, September 27, 2005, at 12:15pm, my surgeon – a man named Preston Scott Reilly, came into my room to give me the results of my pathology. The lump I discovered in my abdomen was called a “mucinous adenocarcinoma.” It was cancer. A tumor. Not a benign cyst. Not an absorbed twin, and not undigested Brie de Meaux. This tumor, he explained, was an aggressive one. It had spread to 6 of the 11 lymph nodes they had cut out of my 32 year old ascending colon. Once it got in the lymph system, Dr. Reilly explained, it could go anywhere. “It’s like throwing seeds into the wind,” he exclaimed, proud of his metaphor. I had stage III colon cancer. I would have to have extensive chemotherapy, which might or might not help me survive.

As I lay there in my hospital bed listening to him, all I could focus on were the trees outside of my window, which had just barely begun turning colors. I was amazed at the way just one orange leaf on an entirely green tree could stand out and look so beautiful. And the sky that day was so brilliant blue; it was like standing on the inside of a marble. I remember thinking that it was as brilliant-blue as it was on September 11^th, the day terrorists flew airplanes into the World Trade Center and the Pentagon. I felt like Preston Reilly had just flown a plane into my brain – and my heart. I didn’t even realize I was crying until he handed me some Kleenex and place his hand on my leg, a hand which felt as cold and clinical and invasive as the NG tube had felt days before.

The percentage of people between the ages of 30 and 39 who are diagnosed with colorectal cancer is .07%. That’s 7 out of every 10,000 people.

I have never been a fortunate person. I was born into a working class family and I was the first person in my family to receive a full college education. I was also the first person to receive a PhD, to publish anything, to earn above the American median, and to have 20-somethings call me “Professor.” But I didn’t get any of this due to luck. I worked for all of it. I was always determined, from the time I was a young boy, to escape the conditions under which my parents had labored their entire life. Conditions which I, at the time, considered pathetic and mean. I cannot remember either of them being happy to go off to work. Nor can I remember a time when life had been easy for them. To this day, they still owe a mortgage on the little modular house they own in Sinclair, Wyoming, a house that most people in my “circle” would silently turn their noses up at because it resembles a double-wide trailer attached to a cement foundation, but which is the absolute pride of my parents (my mother can talk to you for hours about the flowers she’s going to plant in the yard). None of what I’ve ever had was due to luck – I worked hard to try to create a better life for myself, but also to give my parents something better through me.

And so, I suppose, I’ll have to work at this, too. Luck won’t save me, just as it didn’t put me through college. I have to save myself, but I also have to save my parents. I’m the only reason either of them believe that there is hope in this world. I’m the only reason either of them believes the American myth: that if one works hard, a good life is possible. That myth never worked for them; it cheated them. Asa and Heidi Meeks are people in their 50s who, due to the frequently hard nature of their lives, look more like they’re in their 60s. My Dad has rough, calloused hands and deep wrinkles under his sad eyes, and my Mom frequently sounds tired whenever I talk to her on the phone, and she complains about aches that, in my view at least, are due not to anything physical but rather to the stressful nature of her life. They get depressed about bills they still can’t afford to pay. They rarely take vacations. They view the world as a corrupt one which didn’t give them a fair shake – because it is, and it didn’t. I’m the only, single reason that they believe there’s any fairness in the world. So I have to live. Because if I don’t, their hope and faith and everything else that makes them beautiful human beings, will die too. And no matter how unfair the world really is, their humanity is real too, so that cannot happen.

My first post

Hello everyone. Welcome to my new blog. This is just a test-post to see if I can finally make this thing work.