Why Can't She Have Normal Cancer?

Tonight I got mad at my wife. Not only does she have cancer but the thing is taking up so much real estate in her skull that she sometimes forgets how to get up out of a chair. So not only do we have to deal with the ins and outs of cancer treatment, but her personality at times can resemble that of a precocious 6 year old. She also has problems wetting the bed. After three mornings of wet sheets I am now an expert of how to get urine stains and odor out of a mattress - but that is another post.

I planned to make the idea of adult diapers fun and amusing. What a folly that was. (Note: See previous posts on making plans.) The long and short of it is, the plan didn't work. You see - having a honkin' big tumor sitting on your frontal lobe means you can kiss your "executive function" goodbye. You understand what you have to do and know the steps to do it but somehow the message to your body all gets scrambled and you just give up. So putting on this stupid, humiliating diaper contraption was not going to happen. I employed every tool in my newly formed arsenal: modeling behavior, re-direction, bribery with fresh berries - you name it. But that diaper was not going on.

I snapped. I did. I couldn't bear the thought of another morning of wet sheets and dousing the mattress with peroxide. I got pissed off with love of my life because she has a fucking brain tumor and can't respond to simple directions. What kind of person yells at someone with cancer who can't help the fact that their body has turned against them. Me - that's who.

Realizing and admitting your humanness is a difficult but worthwhile lesson. One that you cannot complete without agreeing to be totally vulnerable. Cancer makes it possible for you to have that lesson. It gives you the opportunity to walk to the edge of your life and look down. To become honestly and acutely aware of your frailties. Pick them up, turn them over, set them down - pick them up again if need be. Then close your eyes, hold out your hand and ask for forgiveness from the one who loves you so much she will stand on that edge with you, hold you, wipe away your tears and promise it is all OK.

So tonight my wife, who has sinonasel undifferentiated carcinoma - a rare and difficult to treat cancer, comforted me. And I let her.

On The Road

Humans love to make plans. We set our sights, choose a major, set goals, select a career path. Not a bad thing, entirely. And is is probably part of our wiring. But today 7 year olds start worrying about how their transcript is going to look on their college applications and have the schedules that would rival a candidate for public office. They worry about how to participate in enough extra-curricular activities to outshine all their peers. So I got to thinking that we may be taking this planning thing way to seriously.

I've been one of those serious plan makers - and I tell you that I am not sure where on the spectrum I fall now - but I am starting to think that maybe I should chuck the plan making and start with the living. Seven year olds do not know that what happens in high school will be of little consequence a decade later. But I would hope that the "grown-ups" around them do. Why, then, do they continue to hold up the facade is beyond me. Maybe it is like the story of the Prince's new clothes, nobody has the guts to step forward, point their finger and shout "Your're a fool!". Plan making can keep us from living. Because real living is more fluid. Planning is a mental process - living is physical, experiential. We can get way to caught up in planning. Many people leave this physical life with stellar plans but little else - because the circumstances were never perfect for launching "the plan".

So where does Hope fit in with all this? I think it is what we have left if we are lucky enough to realize the folly of our planning ways. You may say "All you have is Hope?" Well, no, but I think it is the wagon I am going to hitch my star to because all that other stuff, that planning and choosing and selecting, it is really all an illusion. An illusion of control. A lie that was started by someone before either you or I ever got here and it is perpetuated by.....God knows what. So, at this point, I am embracing Hope. I am reveling in Hope. And I am fluid, following the dance, like a tree in the wind, to let Hope carry me along while I practice my Faith.

Five white coats, four pair of muted pant legs and one pair of stocking legs, five serious facial expressions. This was not good. I think we both knew it even before they opened their mouths. A low buzz followed by a feeling of being pulled backward down a tunnel. Too many thoughts and images flashed at once across my consciousness. Only two short years until retirement, until our road trip. We had plans, sell the house, rent an RV, train the cat to walk on a leash, travel the country, take pictures, explore, laugh, sleep late, try new things, get lost. Cancer was NOT on the list.

So that is why this blog. We have this big hurdle. This stupid cancer. This treatment, endless questions by endless doctors, residents, nurses, chemo and radiology technicians. It sucks. But we also have friends. Friends who send cards and prayers, who help us shop and cook and eat. Who are there if April needs someone to stay with her while I run errands. And we still have HOPE...Hope For the Road.