Tuesday, November 29, 2005

What Do You Say?

I had lunch with two friends yesterday. They both asked me how I was doing. Ah, the dilemma - should I be honest, or should I be nice? I was tired of being nice, so I said, "I spend most of my time trying not to be depressed."

Where is there to go from there? They wanted to know what I meant and so I told them about the things that I face every day.

How I am watching the love of my life being slowly eaten by her disease - consumed from the inside.

How surprised I am when I see a photo of her because she looks beautiful and full of life, not wasted.

How I need to find a job, but am getting no responses to the resumes I send out.

How I don't know how to face a potential employer and try to sell myself knowing that my wife is home dying.

How I need to assess my children's mental health by reading their blogs because they can't talk honestly with me about how they feel.

How I feel worthless because I am not working.

How the money goes away.

How we will probably have to sell the house and move to someplace more affordable.

How I can't even think of the insurmountable effort required to get ready to move. The packing. The cleaning. The painting. The moving of everything in the garage to make it look bigger. Finding a place to put everything in the garage. The "de-personalizing" of the house for showings. The endless voyerism of the showings where strangers come into your house and peer through your dresser drawers, peek in your bathroom cabinets, and move silently through your most private places.

How I dread the "looking" for a new place, a cheaper place, a different place full of ghosts of previous owners.

How I will feel so hopeless when she is gone.

They were silent then. Lunch tasted like cardboard.

Friday, November 18, 2005

Bad Days

My son is having a bad day. He turned in a school assignment late and got half credit. The problem (or one of them) is that he first claimed the teacher made a mistake on entering the grade. Then, when pressed, he said that he didn't do it on time because he forgot to write it in his planner because he was under too much pressure because of "things at home", which when decoded means "my mother and father have cancer."

I have left the conversation because I am tired of him blaming us for his behavior. There is no doubt that having both parents suffering from terminal illness is a bummer, but that is not an excuse for not owning up to your own actions. The real pain for him is that we grounded him tonight and he can't go to the new Harry Potter movie with his cousin. This is what eats him tonight.

Cancer makes a convenient excuse for anything bad that occurs in our life. This kid is asked to go to school, do his homework, do his home chores (pretty light weight ones), wash the dinner dishes every other night (meaning - load them into the dishwasher), and not much else. Most of the time, he is a sweet, reasonably behaved young man. But when something goes wrong, it is never his responsiblility. It is due to "things at home." Man, how that gets to me.

I know that he is only 12 (thirteen in about eight weeks). He is struggling with all of the hormone hell that goes with this patch of growing. So, does that excuse him from responsibility? I don't think so, but I am finding a dearth of ways to get this particular lesson across.

Maybe I just need to trust that things will lighten up in a year (or eight) from now. I don't know.

Fuck. This is just a shitty set of circumstances.

Monday, November 14, 2005

The Ache

I had a dream the other night of a woman's backside. She was climbing out of a window away from me. She was wearing nothing. She was not moving very fast and her vulva smiled coyly at me. I reached out and placed a finger gently on the spot where the plump, hairless lips met and slowly pushed my way in. She squirmed slightly and I knew I had been away from sex for too long because I no longer knew my way around. I had to fumble a bit before I found what I was looking for, an invitation, a promise of deeper mysteries. I entered.

I dream of sex a lot these days. I have not been able to make love with my wife for three years now. I ache with need.

This is perhaps the cruelest aspect of this disease, the loss of intimacy. Our relationship has changed because of it. We do not talk about it very often. I think that it is too painful for either of us.

The myeloma has caused bone damage that makes sex impossible. When you add the effects of chemotherapy and stem-cell transplants, passion has flown away.

I remain true to my wife in the strictest sense, but I feel the loss of physical love very strongly. I make use of the internet and newsgroups to find release of a sort. While my wife slowly wastes away upstairs, I cum to virtual sirens and am consumed with guilt.

Saturday, November 12, 2005

The Beginning (or perhaps The End)

Eleven and a half years ago, I found out I had cancer. I was diagnosed with follicular, small-cleaved cell Non Hodgkin’s Lymphoma. This is an incurable, ultimately fatal form of cancer. On the bright side, it is slow moving and so far, has produced no debilitating physical side effects.

When I first learned of this, I went through the usual state of shock, walking around looking at people, wondering why me and not that fat guy over there, smoking and stuffing down a Big Mac. I was prone to leaking tears unexpectedly when I thought of my young children not getting to know me.

Time passed. I have gone through four rounds of chemotherapy and still show no outward signs of the disease. My wife and I had come to terms with this and appreciated the time we were able to have. My children are growing and will perhaps have memories of me after all. I considered myself to be a lucky guy.

Then, we were hit again.

I returned from a business trip in Europe, and while lying in bed exhausted from international flight, my wife told me that she had been to a doctor in my absence, and that he thought that she might have multiple myeloma. I remember being paralyzed, struck numb by the thought of this. Throughout my illness, my wife was my rock, the family's foundation, the glue that held us all together. She could not be sick.

There followed a second round of shock when I moved as though encased in molasses. I could not function at work; I struggled to connect with my children. My wife and I lay wordlessly in bed and cried.

That was three years ago now. Since then, we have gone through three stem cell transplants, all failing. We are now faced with the final fight. How long can we forestall the inevitable?

This blog will be that record.