Turns Out It's Not All About Me

 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

Kevin's Update

  Had day 1 of Cycle 4 today. No drama. Enjoyed my new music (thanks family) on my new headphones (thanks work team) all day. 9:45 to 4:45 is a pretty long day. Doc thinks I'm doing well, don't have to have bone marrow biopsy or CT scan. If the nodes are small, he's happy. What happens after 6 cycles (done by New Years) will depend on which path I take going forward: Do Nothing (doubtful); Transplant (not feeling it, but maybe); maintenance drugs (maybe).

 I Am The Center Of The Universe. Just Ask Me.

 This post makes me remember one of my favorite shticks on Saturday Night Live. "Remember, it's about me, Al Franken." The Al Franken Decade (the 80's). Surprisingly hard to find video clips of this on The YouTube or The Google. But it was funny. And apropos. Which is a word you have to work hard to use in a sentence. But I, Kevin Berry, did it. It's about me and my blog, so when you read it, remember to think: "How does my reading this help Kevin Berry? If everything I do doesn't help Kevin Berry, then why am I doing it?"

One of the many sucky things about cancer is that hits private people just as often as outspoken people. One of my "first three things to do when you find out you have cancer" (first sidebar in the book) is "talk about it." Activate your network. But that's hard to do. First, it hurts people to find out you're seriously ill and might die. Telling your kids, parents, siblings, neighbors, friends is maybe more horrible than finding out about it yourself. And, if you're a very private person, used to keeping your feelings and problems inside, it's totally embarrassing to have your personal private business hauled out into the open. Or worse, knowing people are talking about you where you can't hear.

When I give talks about my adventures, there's one story I always tell. Because it's the single most important thing I've learned from having cancer. Turns out it's NOT all about me, Kevin Berry. It's about everybody. 

A good friend, co-worker, and touchy-feely consultant braced me early on. "Kevin," she said, "You can't keep quiet about this. God didn't give you a disease. He gave you a ministry."

Well, let me tell you. I didn't want cancer, but I darned sure didn't want a ministry. Between the two, given a choice, I would have had to think pretty hard. But I got one anyway, without having an actual choice. Through my emails, book, speeches, and dozens of awkward (to me) one on one conversations, I've ministered to more people than I will ever remember or know. And that makes me kind of uncomfortable. Since it makes it about me, Kevin Berry, in a role I don't feel qualified for.

For almost 6 years now, every 3 weeks like clockwork, I get a nibble. "I've got a friend/relative that ...." Well it happened again. Right now. I write and edit for a couple of great robotics magazines, Servo and Robot. One of my authors, a couple of weeks ago, mentioned a medical problem he was having in an email apologizing for a slightly late article. One thing lead to another, he realized he was possibly heading down Avenue "C", I sent him my book. Today, while I'm sitting in the chair, taking one of Doc Levine's Magical Mystery Cures, he emails me. Lung cancer. So I'm in treatment, stoned out of my mind, mainlining benadryl, and counseling a man I know but have never met via email. I directed him to last night's blog post.

And here it gets weirder. In my intro last night, I mentioned that I've never been in the military or combat, so I excused myself from any opinion on courage under fire. Well guess what. This gentleman is a Vietnam vet. And I'm telling him about courage. Proving that God has a sense of humor. And that you have to be very humble when you talk to people, or express opinions. Or basically live in any kind of civilization.

So, if you have cancer, one thing you get is influence over people. If you suffer in silence, and try to hide it, people notice. If you mope around, complaining and whining, you suck the pity out of them PDQ. If you just sort of go with the flow, making it part of your life but not making a big deal about it, people think you're an inspiration. If you attack it, loudly and boldly, say, writing about it and posting on blogs, you'd darned well better be humble and helpful. Because nobody like a braggart. But usually, if you have a helping heart, the openness comes out as caring. That's what I, Kevin Berry, think anyway.

For the record: I don't believe God gives people cancer. I think the World does it to us, based on some abstruse combination (Hey! Kevin Berry used another 6 bit word!) of our misuse of technology, lifestyle, and also the random dance of chromosomes over hundreds of generations. Or maybe it's the Enemy, directly attacking. Fill in your personal theology here.

I do believe, though, that God's best thing is turning bad stuff into good stuff. So if you choose to out yourself, and talk boldly but humbly about your battle, He will leverage the World's attack a hundredfold into bountiful good you'll never know the extent of.

Galatians 6:
⁹ Let us not lose heart in doing good, for in due time we will reap if we do not grow weary. ¹⁰ So then, while we have opportunity, let us do good to all people

The Morning Face Of Courage

 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

Kevin's Update

Cycle 4 of 6 starts tomorrow. After this one, I'm either in complete remission, in which case I get 2 more cycles then we answer the question we've been asking: "What's next?" If I'm not in CR, then we start asking a new question, "What now?" November 27th we go over to Moffitt to meet with Dr. Shah to discuss both questions. Won't know which situation I'm in until sometime in the next 3-4 weeks, after some sort of testing, I'm guessing a bone marrow biopsy. (Had 4 of them so far, not really a big deal done by a good doctor, which I have one of. Along with bad grammar.)

Observations On Courage

{Note on this Veteran's Day: I've never served in the military, nor been in combat. Anything I say here about courage is about the homespun, civilian kind. Please accept my humble thanks for what many of you have done, with a type of courage I'll probably never witness in person.}

There are two kinds of courage, in my view. Adrenalin fuels one type. Running into a burning building, diving into a raging creek, pulling someone from a burning car. In the heat of the moment, sometimes literally, human beings can perform amazing feats. The mildest, quietest person may rise to the opportunity and become a hero.

Then there's the kind this post is about. I'm not sure what to call it other than perseverance in the face of a tough life. A couple of stories illustrate what I'm talking about.

Back in 2006, after my bone marrow transplants, I went into the little, dingy infusion center that was used before the nice new building opened. It was so small, people getting treatments were almost knee to knee with patients waiting for shots. The nurses almost had to sit in people's laps to treat folks across the way.

One day, when I sat down to wait on a shot, a man squirmed nervously in the treatment chair across from me. He was a very typical looking fellow. Early 40's; average clothes; looked like he maybe worked in the construction trade. He met my eyes and said, "I guess I'm just a big chicken. I'm scared." Before I could say anything, one of the nurses descended on him like an avenging angel.

This young lady was maybe 30, a single mother, and noted for being especially sweet and kind. Well, not today. Her eyes blazed, and she unleashed The Mother's Finger Of Scorn,  nailing him right between his eyes. "You just stop it right now!  You are NOT a big chicken. It takes real courage to sit in this chair! Just ask him!" And she pointed The Finger Of Speak Up Now Or Else at me.

I reacted as any 50 year old, father of 4, human spaceflight project manager would when accosted by a woman young enough to be my daughter. I folded completely. "Uh, sure. What she says. Is right. Yes." I stuttered.

I had assumed she'd go over, pat him on the shoulder, and tell him in a soothing voice that it would be fine, he'd be OK, etc. etc.  Instead, this angel of mercy, having experience with hundreds of patients, decided he needed a solid kick in the booty. Or, maybe she was so empathetic with all the suffering around her, her mothers/nurses defense instincts kicked in. Either way, he sat back, relaxed, and did what had to be done.

What brought this scene to my mind was one I witnessed three weeks ago, during my last treatment. A couple sat next to me, him in the big chair, her in the little side chair. When the nurse, who is also young and noted for being very sweet and kind, came over, they were bubbling over with joy. "The Doctor says I only have one little spot to clear up, then I'm done! Only a couple more treatments!" The nurse, and many of us around, congratulated him. Good news in the chemo room is good. Since bad news is more common.

Fifteen minutes later, 5 into his treatment, he was violently, seriously ill. I mean the worst I've ever seen in a chemo room sick. He was, to use a term I coined right there, "Six Nurse Sick." The worst I've ever been, any time, is Three Nurse Sick. And one of mine was a trainee. In about 20 minutes, the paramedics showed up. Another first in my long chemo experience.

The rest of that day, all night, and the next morning I thought about and prayed for that poor man, from joy to ambulance in less than an hour. And what his wife must be going through. But, when I went into the infusion center the next day, there he was, peacefully getting treated again. When done, he ambled calmly out, no sign that he'd been taken out on a gurney the day before.

Chemo (and radiation, and dialysis, and and and) nurses see courage every day. These places are swimming in it. The first time you go into an infusion center, you see a bunch of beat up people, of all ages and genders and races and economic situations. And it's really really sad. After a few days, sitting and watching and listening, you realize, these are people of huge courage and resiliency.

Talking to many of them, and with my own experience, here's how the days start for a cancer patient. The alarm goes off. You roll, literally, out of bed, and stumble to the bathroom, holding onto the wall for support. Then comes the worst part of the day. The First Look In The Mirror. You stand there, bald, bloated, saggy, pale, and baggy eyed. You see the scar on your shoulder, where the port was put in. And, usually, many others from surgeries. For about 10 seconds, you stare into those sad, scared eyes, having a major pity party, and say something like: "I hate this." (Others: "This totally sucks." "Why me?" "I can't do this any more.")

But, without exception, after those precious 10 seconds, you lift your chin, square your shoulders, straighten your back, and begin the rest of the day. Sometimes, you'll motivate yourself with a few choice words about not being a big chicken. Or, you'll realize you aren't doing this for yourself, but for your family, friends, and co-workers. And go on with life.

What is it that keeps people like this, who have every right to just go back to bed, going forward instead? Well, let me tell you. Cancer is your own body betraying you. You have no control over your most intimate possession.  What you can do, is live the life it's trying to stop. Fix breakfast. Take the kids to school. Go to work. Visit with the neighbors. Shop for groceries. Worry about next year's tax bill, even if it's a real possibility you won't have to deal with it. Cancer patients crave normal. The mundane is reassuring, even if every so often you step back and wonder. While you're sitting at a football game, your body is fighting your medicine. When you're at a party, everyone else is going to live 40 more years, while you might make it 40 more months.

The most surreal experience I've maybe ever had was sitting at EPCOT's Tomorrow Land Ice Cream Shop, enjoying the day with my family, while $100,000 worth of radioactive genetically created artificial proteins fought cancer cells in my body. It was a very nice day, I recall. And I won. Six year's worth of more time with that family.

This time isn't so bad. The medicines barely make me feel down at all. I have all my hair. No bagging, no sagging, no paleness. I've missed almost no work. And, most days, no pity party. Well, maybe some days. But not all. 

I'm a very Blessed man. Thanks to all my friends, family, co-workers, and random readers that are the normal in my para-normal life right now.

Kevin