Steve's REAL Bad Day
Wow. I’m having a real bad day. It ranks right down there as one of the worst. And it’s only 8:23 AM on February 25, 06. Writing is one way for me to make myself feel better. And I can organize my thoughts and document them. I have a killer headache right now. This could be a long story, so, like with the Olympic coverage, tune out now if you don’t want to hear the score.
You are all my imaginary cyber friends. Not really, but I can share my very personal trials and tribulations with you because this is not real. This can’t be happening to my family. My headache is getting worse.
A few days ago I came down with some sort of viral malaise. A cold or the flu or something. It has made me feel very weak. My lungs fill up at nighttime. I have the chills. I hack and cough and haven’t slept much. My balance is horrible, and I’ve passed out a few times. It’s only 8:30 in the morning and I’ve already had a bad day.
Some of you have sent me private notes telling me I should write a book about a husband and wife both trying to survive brain tumors. I may do it. Last night I decide that I’m gunna try to find a pocket size dictation machine to carry around to capture my thoughts.
Many of my thoughts arrive in my head at night when I can’t sleep. I should capture them on a memory chip with a voice recorder.
I have always wanted to write a book, and I had even picked a topic some time ago. It wasn’t a fictitious story about a husband and wife who have brain tumors. I say it must be fictitious because it can’t be true. We still can’t even believe this is happening to us.
Ok, I hope I’ve made you curious about the other topic I was going to write about. This one is easy to believe and is in fact true. It’s about two young long-hairs who hitchhiked from Topsfield, Massachusetts to Colorado and back in the late 60’s. A good friend and I wanted to go mountain climbing in the Rocky Mountains. If you’re old enough to have been around in those days, you know what a different world it was. The trip was an adventure worthy of becoming a Monday night movie. Maybe not. That’s enough of that. Back to the other story.
I still have a headache.
Yesterday, February 24, as some of you already know, was an anniversary of sorts. My wife, Barbara, had her last course of radiation and it also marked exactly two years from my own 9 hours of brain surgery.
The hospital where Barb gets the radiation treatments is an easy 10-mile ride thru mostly New Hampshire back roads. We have a lot of good friends who have helped with driving so I wouldn’t have to drive her for the entire six weeks. These friends have supported us through all of this. Some of them know cancer first hand and are dealing with their own problems.
Yesterday I drove. Barb was excited that she has passed this milestone. No more radiation. Her last day. It was a time to reflect, and a time to step back and look at the big picture. This ordeal may be far from over.
In the hospital there’s a ship’s bell that sounds when someone has their final radiation treatment. It’s a ceremonial gesture that each of the radiation patients (and their spouses) likes to hear. Of course, Barb rang the bell. They also gave her a diploma and the mask that held her head still while they used surgical precision to blast the tumor with photons.
We soon left, but not before we said goodbye to the staff and some of the cancer patients. We are lucky to live near this hospital and many other leading hospitals in the Boston area.
We were feeling pretty good, in relative terms. You know what I mean. The drive home was no different than any other. The wind was blowing and there were a few rogue snowflakes hitting the windshield. Typical New Hampshire weather.
Barbara is a computer wiz. She works for the local school system and maintains their desktops and laptops. When we arrived home, she checked her mail as usual. This was yesterday morning. Barbara learned that her aunt had died at about dawn.
The news came to my attention when I heard Barb crying in the other room. She cried all day. By the end of the day, one of our lovely supporters gave Barbara a ticket to fly to Buffalo.
Barb grew up north of Buffalo on Lake Ontario. Most of her family is still there. Her deceased aunt lived next door to the house that Barb’s father built before Barb was born. Barb never knew her father. He was General McArthur’s driver in post war Japan, and spent time in Nagasaki and Hiroshima. A few years later he died of Hodgkin’s lymphoma. Go figure.
Newfane, NY is the quintessential American small town. It’s a place where you can raise a family and not lock your doors. It’s mostly a farming community with down-to-earth people.
Yesterday I tried to use my frequent flier miles to get a ticket to Buffalo, but it was too short of a notice to use them with USAir. The best rate I could get to buy one was about $500. Normally you couldn’t pay ME to fly to Buffalo this time of year.
Barb had an 8 AM flight. We didn’t sleep well last night. In between my coughing and her tears we spooned and talked most of the night.
Feeling as sick as I did this morning, I should have had someone else drive the 10 miles to the airport. On a good day, I’m dizzy and have poor balance. Today it was extreme. I had a hard time driving. The fact that I can’t feel my right foot doesn’t helps matters either. Barb can’t drive at all. She was still fighting back tears before we arrived.
I’ve done a lot of flying so I’m pretty savvy when it comes to airports. I dropped her off at the terminal and left her in a wheel chair and with a Sky Cap while I parked the car.
At check-in, our nephew’s wife happened to be behind the counter. She and my nephew, Eric, work at the airport. Yesterday, I had thought about arriving at the airport with a packed bag and try to finagle my way to Buffalo with frequent flier miles again. If I had known that Anne would be at the counter I would have tried it.
My headache is still with me. It’s getting difficult to think and write.
After checking-in Barb’s luggage and getting me a gate pass, I pushed Barb in the wheel chair to the security checkpoint. The people behind us were a little perturbed that it took so long for us to clear the X-ray and metal detectors. It didn’t help that I had a pocketknife and a metal belt buckle. Did I say I was airport savvy? I guess it’s been a while since I have flown.
Pushing Barb’s wheel chair gave me something to control my balance with. I left her for a moment to stand in line for a cup of coffee. My cane must have known the way because I can’t remember how I got there. While standing in line I passed out and fell on the guy and his wife in front of me. Twice! I have no recollection of ordering coffee and carrying two cups back.
It’s getting hard for me to write. So I’ll try to end this chapter.
My nephew the baggage handler had heard that we were in the airport so he graciously joined us at the gate. His friend was the gate attendant so he gave Barb special treatment and helped her to the aircraft.
I headed home. I still didn’t feel well both physically and emotionally. I don’t like to admit it, but I cried the whole way back. I haven’t been this depressed in a long time.
Up to this point, I always had to be the one to console Barbara. God knows she needs tons of help. No one on earth deserves it more than her. I’m going to be spending the week alone waiting again for Oprah or Dialing-for-Dollars to call. Nah, Oprah wouldn’t believe our story. Maybe one of you should tell her it really is the truth.
I’m done for a while. I feel a little better, but not much.
Steve Cox with the brain tumor
h/o Barbara with the brain tumor.
She just called, she’s in Buffalo and it’s snowing hard where I am.
Not there. Go figure!
March 7, 2006
Barbara is back from her trip home. If anything, her aunt's death was fortuitously timed to be after Barb ended radiation. In retrospect, I should have planned a trip home for Barbara at the end of radiation anyway. Maybe it's good that I wasn't that smart. I would have probably escorted her and fallen sick en route.
The flu really hit me hard even though I did get vaccinated. These flu vaccinations are apparently very stain specific. Just my luck I guess. I'm still feeling the affects. My energy level is near an all time low and I haven't yet gained back the weight I lost. Maybe that's a good thing.
When I wrote that 'Bad Day' email, I was 'under the influence' of a nasty virus. In fact, it was a very bad day. Sometimes I get carried away and really spill my guts to you all. That email was a good example. It's sometimes hard for me not to get depressed these days.
Barb starts chemo again in a few weeks. This time she will be taking a much larger dose. Five days on, then a few weeks off. I'm not sure how long this lasts, but I know it will be for several months. The whole experience has been incredibly difficult for her. Not that it wouldn't be for any human being. She has good days and bad, but even the good days often include tears.