“I Would Rather Have AIDS than Leukemia”

storytotellya ♦ June 7, 2014 ♦ Leave a comment

I creep quietly in the cancer support group room because I am almost 15 minutes late. This is a new set of people for me. A fourth different group so far. I have been trying to find one that would actually live up to its name.

I sit down in the last empty chair and complete the circle of about twenty adults around the room. I spot the counselor right away. A perky forty something guy, rigid on the edge of his seat, gazing at the person speaking at the moment. It’s the introduction time.

“…so it turns out I would rather have AIDS than leukemia.” Concludes one guy, let’s call him Joe. He is in his 30s, baseball cap, shorts, flip flops. You could never guess he was sick. Looks like he just got back from a football game.

His eyes stare across the room, his life playing itself out in the irises.

“I mean,” Joe continues, “I didn’t even know what leukemia was when they first told me. They said it’s either AIDS or leukemia. And I was thinking please God don’t let it be AIDS. Well, I guess I was wrong. I would rather have AIDS than this.” He repeats and nods his head. He looks over to the person on his right and silently hands over the imaginary ‘what’s your story’ relay. The woman sitting in that seat starts speaking.

I look around the room. What other stories and thoughts are hovering in everyone’s head? That young girl with a thick braid and Ugg boots? That forty year old looking lady with sad eyes? The girl next to me who’s been fighting tears this whole time? What about the older looking lady huddled under a blanket with her fingers laced tightly around a mug of something?

The counselor is the only healthy person in the room and looks clearly uncomfortable in the face of all this disease and misery. In the face of the matter of fact stated stories about surgeries, transplants, reconstructions, chemotherapy, radiation, and recurrences. He keeps blinking and shifting in his seat, taking random notes in his notebook.

When I relay my story, I hear the gasps and see the mouths drop when I reveal I got two different cancer diagnoses in one single year. When I talk about my eye surgeries, everyone zooms in to detect any abnormalities on my face. Can they tell which eye it was? When I describe my mastectomy and reconstruction, their gazes involuntarily drop to my chest.

I wiggle in my seat and my leather jacket crunches. I cross my legs and shift my weight to one hip, ending my story on a positive note about how my hair is finally growing back and I am almost done with treatment.

But my brain vibrates and trembles with fear and the unknown. The hazy future. The smog covered years to come. The upcoming tests.

I open my eyes wide to try and reverse the tears I feel are starting to collect there. I sweep the room with my gaze. Will anyone give me hope?

But the looks are melancholic, sad and forlorn.

Everyone stares into the center of the room as if there was a huge revolving crystal ball revealing everyone’s destiny.

Why do I go to these groups? It is like a masochistic Catch 22. I go because I can talk about my cancers without any stupid follow up questions. Without people trying to make me feel better about how I look. Without people assuming that I am “…done now, right”? The people in the support group understand. They know. They have the same demons flying in their heads.

At the same time, the support groups depress me to such a degree, I want to cry within the first five minutes I am there. They are a constant reminder of just how wrong things can still go.

And then again, on the flip side of that, when I hear someone’s story who is worse off than me, I feel relief. I feel guilty and ashamed that I breathe easier when someone else is more miserable. But the relief is temporary because it turns into a “…what if that’s me in a few years”. Then I want to cry and smash a vase across the room.

I keep going to these groups because I can’t handle a normal social life. I can’t handle healthy people’s comments about “…the cute haircut” or the assumptions that now, since the bulk of the treatment is over, I am somehow done with it, like when a skinned knee heals over.

This will never be over. I have more scars than I can count and I have no guarantees from the doctors. All I have are statistics.

Then there is the head, the brain, the feelings. The anger. The sadness. The fear. The indifference to what happens next.

I don’t plan. Anything. Anymore.

I find it hard to listen to healthy people’s problems. I find it hard to find meaning at work. I find it pointless to search for happiness when there is a lurking dragon sitting in the cave and I can’t read his mind. I don’t know if I have one year left or thirty.

It has now been a month and a half since that support group meeting. The lady under the blanket passed away on May 23rd. I still remember her perky voice, so unlike the husk of her body. Turns out she was only five years older than me.

If someone would ask me about the future, I would probably use the famous line:
“I don’t know and I don’t care.”