Today, September 15, 2011, would have been my brother's 30th birthday.
I see so much out in the world touting Breast Cancer Awareness. Pink ribbons and pink fountains and pink rulers and pink coffeemakers. And while I'm sure we all agree this is a vitally important cause, I cringe a little every time someone says "Is that a REAL THING?" when I tell them my brother passed away at the age of 26 from tongue cancer.
John had gone to our dentist and wonderful family friend Bob for a routine teeth cleaning when something strange showed up in his x-ray. A big dark spot inside his tongue. John had noticed a sore on his tongue for a while but never thought to have it checked out; it just seemed like a canker sore.
The night John was supposed to receive his biopsy results, my mom was scheduled to be on a plane, flying home from a business trip. If he got the call while she was still reachable by phone, he was supposed to call her with the results. If he got the call while she was in the air, he was supposed to call me.
I was at work at the time, bussing tables at a barbecue restaurant in New York. My phone was in my leather server's apron, and as soon as it started vibrating I ran up to the restaurant office to take the call.
Hello?
Hey.
What's going on?
I just talked to the doctor.
Okay, and...? (This was a normal conversation for the two of us - getting information felt like pulling teeth.)
He said it's a tumor.
Okay. What kind of tumor?
I don't know. What do you mean?
Like, is it benign or malignant?.... Do you remember if he said either of those words? Benign or malignant?
I don't think so.
That is the information you need to know. Will you call him back and ask him?
I just got off the phone with him. I don't really want to call him back.
John, if you don't call him back, I will. Give me his phone number.
Okay I'll call him. <click>
One minute later...
Hello?
It's malignant.
The first surgery John had was to remove half of his tongue and replace the missing piece with a lump of skin from somewhere else. The night he had his surgery, we texted about where the skin could have come from.
Is it another piece of a tongue??
I don't know. It's from some dead guy.
But is it tongue?
No, I don't know! It's just skin. It could have come from anywhere!
So it could have come from inside a dead guy's butt?
I guess so!
You better wipe your tongue after you eat or it might get itchy!
I was so sad when the phone our conversation was saved on died for good.
That skin didn't last for long. The graft didn't take and the dead guy's butt skin just fell off one day. Luckily, his tongue was healing pretty well by itself, and since they didn't have to remove the tip of his tongue, he didn't miss it much.
The next two years were up and down for John, in terms of the cancer. He lived with my mom and did chemo and radiation. Sometimes he worked, sometimes he did not. The cancer reappeared in his tongue a second time, and then a third.
I was still living in Brooklyn at the time and had been, for a while, considering a move to a different city. I was looking at Austin, Texas and Portland, Oregon as possibly spots to land. As soon as the third diagnosis came in, I started making plans to move home to Kansas City. At that time, I still don't think any of us in my family or in John's tight-knit group of friends thought that this would ever be fatal. He was 25 years old. It just seemed like he needed all the help he could get to help him beat it. I wanted to be there, in case there was anything at all I could do to be part of that process. And, in the back of my mind, just in case this was it.
I moved in with my friends Bryan and Anthony, who happened to live in the same apartment building my brother and mom were living in. If there was anything I could do, I would be right there. Not long after that, we found out that the cancer had moved into his neck.
On Christmas day, I was over at a friend's house and his mom asked me how my brother was doing. I said "I don't think he's going to make it to this time next year." I had never, ever thought that until the words came out of my mouth.
In January, my mom started finding blood spots on the walls and on John's pillowcases. He had been falling down and hitting his head and not telling anyone. One day he was feeling so bad my mom took him to the emergency room. After an eight hour wait, he was finally given a room. They ran his bloodwork. His calcium count was off-the-charts. It was a sign that the cancer was in full attack mode.
He was admitted, and the next day they ran tests to find out where the cancer had gotten to. The doctor came into the room and let us know that it had moved all the way down his spine. He let us know that John could continue with chemotherapy to try to prevent the cancer from growing any more. Becoming cancer-free was, at this point, no longer a reality. It was just a matter of time.
I can't remember why, maybe my parents were off speaking with the doctor, but John and I were left in the room alone. We were there for a while, each of us doing crossword puzzles, which is what we both did to pass the time sitting in the dimmed hospital rooms. I told John I was going to get a soda from the vending machine and asked if he wanted anything. He didn't. I asked if he was okay.
Well, the doctor just told me I'm going to die.
This is one of those moments in life where, if you could go back and relive it, you would have the perfect thing to say. I would have said something like:
Let's talk about that. How do you feel?
But I was scared. I didn't want to acknowledge that he was going to die. That felt too grim. I didn't want to gloss things over and pretend like he wasn't going to die. That felt like bullshit. So I nodded for several seconds and I went and got a Coke. And I lie awake, now, thinking about that moment and how I could have been so much better.
After John was released from the hospital and into hospice care at my mom's apartment, he spent most of his time in a leather reclining chair in her living room. I can't remember why he couldn't sleep in his own bed in his own room. There was something about him being in the living room. They brought a hospital bed for him to sleep in but he hated feeling like a patient.
On Friday, I was at work, waiting tables at Room 39, when I got a call. The hospice nurse thought he was ready to go. I left work and went to be there with him while he died. He was in a coma, and the nurse felt he needed to be moved onto the fold-out couch. My mom, my dad, and I worked together to hoist him from the chair to the couch. As we were doing this, he woke up.
What's going on? Why are you guys crying?
John was awake for the rest of the day and into the night. That night, his girlfriend Carrie was there, along with my mom and some of his friends. We had the best time. I guess this is the rallying moment people talk about, because it honestly seemed like he was better. We were all having fun, John was showing me clips of a show he liked (Tim and Eric) on the On Demand, and at one point I think he ate some ice cream. It seemed like he was on the upswing.
We all went to sleep that night feeling really great. The next morning, we all woke up and John didn't. He was in a coma for several days after that, and on January 30, 2008, my brother John Henry Haugan passed away.
My brother was a talented chef, so funny, and gave the best advice ever. Happy birthday, brother. Where ever you are, I hope you are having the most amazing time. You deserve it.
