Back to the real world

Hi! Well, we're back from our family vacation. Aubrey calculated that we spent 41 hours in the van, not including the little trips to and from restaurants, tourist attractions, and the like. The kids somehow made it, though, and so did Kelly and I. We had a great time (see pics) and now it's back to the ol' grind.

During our trip, I saw so many friends and relatives. Of course, there were lots of inquiries about how I was feeling. I think there were also lots of unspoken questions about how I am doing. I figure the best way to answer that is on this blog entry.

"Woke up with a heavy head and thought about leaving town.

Could have died if I wanted to, stepped over the edge and drowned.

Oh no, babe. I won't give up that easy now. . . ."

To those who saw me, I'm sure I looked fine on the outside. I lost hair from radiation, but the low-dose chemo did not cause me to lose hair so my beard and eyebrows were still thick. I wore a knit cap to cover the crazy patchwork of hair that remained on my head (it has now dwindled to a small triangle at the base of my skull and a mini-mohawk on the crown of my head). Other than that, I probably looked quite normal.

Unfortunately, I felt quite miserable for much of the trip. My radiologist said the fatigue from whole brain radiation would peak at the end of treatment. He wasn't joking. I really hit the wall of exhaustion on day 13 (of 15) of radiation and it continued for a full week: right during the wedding and the early part of our trip to Colorado. Physical activity was a major effort, the fatigue accentuated the nausea, and speaking a few sentences--or even several words--put me out of breath. Driving only made things worse. And then there was the constant reminder, every time I tried to stand or move, that half of my body didn't want to behave the way it should and I couldn't get around like I wanted. Anyone who knows me knows that I'm an active person. I like to be doing, doing, doing. Having to sit, sit, sit is just plain maddening to me.

So it shouldn't come as a surprise to anyone to say I'm a tad frustrated with the whole situation. But that's not the full answer to the question.

"Don't you ever get lonely? Don't you ever get down?

Don't you ever get tired of all the wicked tongues in this town?"

Before my diagnosis, I had read an article titled something like "10 things you should never say to someone with cancer." I don't remember any of them and, frankly, I haven't had too many people say too many stupid things around me. Probably the worst comment I've heard was from an acquaintance who recently told me, "I thought you were really debilitated but you seem to be getting around great." I felt like saying "Look lady, I can't move my left leg, I'm walking with a freaking cane, and it takes all my concentration to keep from falling on my face. How do you define debilitated?" But for the most part, people have said the right things and been very encouraging. Let me give you an example.

After my brother's wedding, I was sitting in the back of church waiting for everyone to clear out. My aunt Rosalie walked quietly up to me and said four simple words: "You keep fighting this." It was the kind of polite order that only an aunt can give you. But it was exactly the type of thing I like to hear. Why?

For one thing, her comment recognizes that I am involved in a fight. My aunt knows something about this. Her son, my cousin, has been battling a form of sarcoma for four years. She knows that cancer is not like most other diseases or medical issues; it isn't something you tackle in one surgery or a bottle of pills. It's an interminable crusade that requires your full attention for weeks, months, and sometimes years of ongoing treatment.

Second, her comment implies that my efforts at fighting cancer have so far been worth it and should be continued. That's important to hear. Going through various rounds of treatment with little to show in terms of improvement is quite discouraging. And yet, if this battle is to be won, the fight must go on just as vigorously as it has been carried out so far. So many of you remind me of that with your kind and thoughtful comments. And I'm lucky to be surrounded by doctors and therapists who not only provide excellent care but also know what to say to motivate me to get better. When Dr. Mueller says "You're a tough son of a gun" or my physical therapist says "You walk surprisingly well given how few muscles are working in your leg," it makes me want to keep working as hard as I can for a positive end result.

"I ain't no tiger. Ain't no little lamb.
Suppose you tell me mama, who do you think I think I am?

So how am I doing? Pretty darn well, I think. There are bad days, but my outlook remains positive. I have never asked my doctor for a prognosis, and gratefully my doctors have never given me one. What they have given me is a reason to hope that, because of my age and otherwise good health and positive attitude, I can keep this disease at bay for as long as possible. I feel like I have no time to waste on self-pity, and I am glad that my doctors seem impressed by my attitude and perseverance.

I do sometimes worry that someone might see me on a day when I'm feeling sick or tired and draw the wrong conclusion about my commitment to this fight. I would encourage anyone who feels that way to find an old copy of Don Henley's "I Will Not Go Quietly" and listen to it. In the song, he sings about a failed relationship but the words sum up my attitude toward this whole ordeal (and they're driven home brilliantly by Axl Rose--who has what is arguably the most defiant voice in rock history--on backup vocals):

"I'm gonna tear it up. I'm gonna trash it up.
I'm gonna round it up. I'm gonna shake it up.

Oh baby, I will not lie down.
Turn this thing around. I will not go quietly.
I will not lie down. I will not go quietly."

Jeff

PS. On a slightly related note, my occupational therapist marveled when I told him today about my first time driving a car since my craniotomy on August 11: I took the van from our hotel in Colorado Springs to the top of Pikes Peak--solo--for something to do while the kids swam all day in the pool. I hit a small-town cafe for lunch and drove with the windows down all the way to the peak. Talk about a rocky mountain high!

PPS. Nebraska just fired Steve Pederson. Now all they have to do is rebuild the 30+ years of tradition that he singlehandedly destroyed in the name of eradicating "mediocrity".