Home Stretch

 

“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

It's been almost 5 weeks since I last posted. I think a combination of things becoming routine, extreme busyness, holiday preps, fatigue, flavored with a touch of denial have led to the lapse in posting.

So here's the news. I completed cycle 5 of 6 the week before Thanksgiving. My sister Randi and niece Kelli came from California, and along with my Stepmom Sherry came and stayed with us for the holiday. We had a super time, had a huge group for dinner including our neighbors, and like traditional Americans ate ourselves into a complete stupor.

While I feel great, and am basically living my normal life, I'm seeing some signs my body is getting fragile. I've started "the infection of the cycle," having had a sinus infection, then shingles, then another sinus infection. I've gotten in front of the sinus infections by a lot of preventative and  not-to-be-talked-about-in-a-public-blog measures. The shingles were a medium case, just a band around my left side. Since I'd had the same thing around my right side after my initial battle, I knew what was going on. The cure for this, besides time & suffering, was to take four times the dose of my antiviral medicine daily. Which pretty much left my stomach a wreck for 10 days. "But I'm feeling MUCH better now!" (see video clip from earlier post).

December 26th I start my last cycle, a day later in the week than usual. That pushes my "bad days" to Saturday through Monday, but since that's New Years day I was taking it off anyway. I'll work the 27th and 28th, and return to work the 2nd to start the new year.

Medically, we've gained a lot more information but no clear path forward. We had a great meeting with Dr. Shah, the researcher at Moffitt who's on the leading edge of Mantle Cell science in the U.S. To recap an older post, in January I have three paths forward. The "do nothing" option means sometime between 6 months and 5 years from now I'll relapse again. Most probably in 2 years. Not in my nature to do nothing.

Second choice is to jump into the Allogeneic transplant right away. With the usual slowness I've become accustomed to, the Bone Marrow Transplant clinic still hasn't gotten back to me on my options for donor matches, even though it's been 6 weeks since my visit. If I'm going to do this, it needs to be done as soon as possible after my last treatment. Medically, it's the only known potential cure; but I'm not liking the risks very much. After analyzing them every way I can, and doing checks myself, here's how I read the odds: 15% chance of fatality within the first year; 20% chance of the transplant not curing the disease. 33% chance of chronic graft vs. host disease; 33% chance of everything going well. Going well means about 12-18 months on disability, but a probable lifetime of being disease free. Chronic graft vs. host disease means a diminished quality of life for years, disease free. Given no other options, of course, this is the way I'd go. These odds are somewhat customized to my age and general good health. If I was to do this at 60 instead of 55, of course, the odds swing a little more against me.

Third choice is "hang on and wait for more medical technology." This is what I did last time, opting for an autologous transplant instead of an allogeneic, hoping if I relapsed something less drastic would be available. Which it was. This treatment I'm on now, while certainly not easy, is very mild compared to the CHOP-R I did before. No hair loss, no bloating, no massive doses of steroids, food still tastes good (except for a few days after cycle 5). According to Dr. Shah, who wants me to seriously consider the transplant, the alternative is to go on maintenance Rituxan, every other month, for as long as it works. He says there's no limit to the number of times I can take it, and no record of anyone having a problem with long term use. Basically, you take it until you relapse. Most people who've done this are on their first occurrence of MCL. Only a few people have done it on relapsed Mantle Cell, so if I go this route I'm pioneering again. Of those on their first time, many have gone 2, 3, even 5 years before relapsing.

Why wait? Well, I've given up on keeping track of all the promising developments that are in Phase 1 or 2 trials, or right behind that, coming out of the European labs. If I can hold off until 4 years from now, I think the odds are higher than 33% something will be available to push this back some more years. Assuming something is available to put me back into remission, I could also do the transplant then. The gamble is that the next relapse will be harder to put back into remission.

Another factor, which seems laughable but is based on the reality of life and the state of health care in this country, is "this just isn't a convenient time to have cancer.!" My job is ending, the Affordable Care Act hasn't quite kicked in for my circumstances, and the stage of our family life really needs about 4 years before things are at a natural transition point. So 2015 or 2017 would be a much better time to have it. It's hard to keep these thoughts out of the medical decisions that need to be made.

So, short term plan is to finish the treatments, have a scan in February, see what Dr. Levine and Dr. Shah say, and make The Big Decision then. In the meantime, continue to interact with fellow travelers, do the research, pray, work, laugh, love, and worry.

Which is pretty much a prescription for anyone's life!

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

Want To Help? Give Lots of Hope, at Little Risk

 

“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 3 of 6 complete, half way done with this part of the process! The Good Doc Levine thinks I'm probably in remission, which is nice to hear. Still the proof is in the marrow, to grossly turn a phrase. Between cycles 4 & 5, in about a month or five weeks, I'll probably have a bone marrow biopsy, which "should" show I'm cleaned up. Then, cycles 5 & 6 which technically are called 'consolidation' but really means "Whew!"

Then the fun really starts. Decision time. We met last week with Dr. Ayala, my transplant doctor from last time, over at Moffitt. He gave us all the raw facts, good and bad, about allogeneic (donor) transplants. I got samples drawn for typing, and for matching against my wonderful and amazing sister Randi's files. She has been a registered marrow donor for years. More about that in a bit.

Now I'm trying to hook up again with The Man Behind The Curtain, Dr. Shah, who is one of the world's cutting edge research doctors for Mantle Cell. He is also at Moffitt, and he answers emails, returns calls, and generally wants to communicate with patients. A saint, I say, a saint. We'll talk about other options besides transplantation, so we can decide what the next 6 months and 4 years will bring.

This treatment was routine, thank goodness. Now that it's Friday, I'm having the down swing like the last two times, but so far, not so bad. We'll see what Saturday morning brings.

How Can I Help You, Kevin?

I get asked, told, begged, and pleaded with daily, for "what can I do to help?" Well here it is. Remember, you asked.

If I decide to go for the transplant, my sister has a 25% chance of being a donor match. In the general population of registered donors, I have about a 70% chance of a match. Now get ready. 6 years ago, when I was first thinking about donor transplants, there were about 5 million registered worldwide. Today, there are over 20 million! But ... with only a 1 in a million chance of a match, do the math. 

Want to help? Go to www.marrow.org and have them mail you a cheek swab kit. Or go down to the blood bank, even if you can't or don't donate blood, and ask them to pull a blood sample. You WILL NOT be a match for me. But you just might for someone. The odds are very slim you'd ever be called.

Don't be scared. YOU DON'T HAVE TO HAVE MARROW SUCKED OUT WITH A NEEDLE to register OR DONATE!  If you did happen to match someone, someday, you'll take a few shots, sit down with 2 I.V. needles in your arms, and have some cells filtered out of your blood. Just like giving platelets. NO MARROW SUCKING! You don't even have to go to where the patient is, just your local hospital. For half  a day. That's it. That's why they're called Stem Cell Transplants these days, the old scary way is gone.

Really want to make me feel better? Want to feel good yourself at less risk of actually having to do anything than the odds of being struck by lightning? Register.

If 100 people would sign up, this whole thing would sort of kind of be worth it. For a thousand, it would be close to a draw.

Marrow.org - do it. Tonight on line, or Monday at Central Florida Blood Bank. Then post on my facebook page, or here, or email me.

Thanks! No jokes tonite, this is serious stuff.

God Bless & Thanks for the prayers, texts, emails, calls, and visits.

KB

The Surprising Suckiness of Inspiration

 

“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

Personal Details & Updates

This is the third of the three weeks in Cycle 2. Overall feeling great, although my bounce back didn't come quite to "normal" this time, which is not just expected but part of the glamor of chemo. Each time, I expect to bounce back a little slower, and not quite as high. No complaints, this is WAY better than the CHOP-R I had last time, the BEAM before my transplant just giggles at Bendmustine. 

Next week, cycle 3 of 6. Moving from 1/3 of the way to 1/2 of the way done.

Thanks to Jeff Conner, who fixed my weedeater so we can keep up on yardwork. Not only did he have to take it apart, he had to make the thing to make the thing to melt it down to base metal and recast it into a new motor. That may be a little exaggerated, but not a lot. I continue to be re-amazed at the giant and supportive circle of friends and family out there.

And, as we say in the business .... any day you wake up with hair is a good one! And it looks like I'm in the 90% that keep it on this regime. 

The Fine Art of Being an Inspiration

All who know me, I hope, would agree I'm direct but not a braggart, except where my kids are concerned, which is socially acceptable. So when I say I've been told I'm an inspiration, I'm bringing it up in the context of today's philosophical rambling, not to toot my own horn. Which is an odd expression, by the way.

The problem with the Inspiration business is that it comes in two parts, which rank out as really hard and pretty hard.


Step 1: Have something really really bad happen to you that doesn't immediately kill you.

Step 2 - N {where N is between 2 and The Trials of Job}: Don't suck at the rest of it


It's possible to be an inspiration through clean living, good works, and the right amount of modest visibility. But let's face it, Step 1 above is a much shorter, and more common, path. And you don't even have to try, you generally get it as a free bonus given for playing The Game of Life.

So now, lets talk about Steps 2 through lots. Surprisingly few folks descend into the Pit of Whinyness. I'm always impressed how ordinary, mild mannered, run of the mill humans rise in the face of adversity. In a perverse way, being around a bunch of really sick, beat up, often dying people, is a very positive experience. In short, most people Do It Right.

How on earth do you "Do Cancer Right?" Well, just as cancer is an intensely personal and individualized disease, so are people's responses. Some quietly just get on with it, being pleasant and uncomplaining. I remember running into saintly lady named Betty Wheeler in the chemo room years ago, and was stunned to find she was on her sixth round of cancer. That's right, six times. I'd known her for 20 years by then, and had no clue until we saw each other in the infusion room.

Others tackle it with great, loud, good natured gusto. Many people are just jolly about it. They face the Monster with the intent of beating into submission with pure good spirits. They're helpful, kind, more concerned with the nurses and techs lives, families, and well being than the medical professionals are about them.

Then there's those of us who see it as a competition. The quote on the back cover of my book says it all:

"What is our aim? ... Victory, victory at all costs, victory in spite of all terror; victory, however long and hard the road may be; for without victory, there is no survival."

Winston Churchill, 13 May 1940

 Here's the other one I refer to a lot as I fight the good fight:

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, ² fixing our eyes on Jesus, the pioneer and perfecter of faith. (Hebrews 12, NIV)

So, we meet it head on, determined to punish the Monster, drive it out of our lives, stomp it, break it, bag it, burn it, and sink the ashes in concrete at the bottom of the deepest part of the ocean. As I like to say, "what's worth doing is worth overdoing."

And then we get serious about it. And do it more.

The key to most people's rise to the level of inspiration is at the beginning of the verse from Hebrews. "A cloud of witnesses" are watching. Our family, friends, co-workers, neighbors, and acquaintances are watching. As for me, if win battle after battle but lose the war, I want my wife and kids to remember me as never having given up. Personally, I doubt many people who don't have close friends or relatives could fight as well as a spouse, parent, child, or  sibling can. But I could be wrong. I just know that's why I do it.

 

Horrible Bad Poor Taste Cancer Joke Of The Day: Don't have one. Ran out. Internet only has 6, just change the name of the disease. Somebody help me!

Instead, here's a semi gory, funny only to cancer patients story from my book.

Funny story (if you're not me.) (slight artistic license applied, just because I can!) I go weekly for blood work, was feeling like crud last Tuesday. My mouth felt like I'd burned it on hot coffee, except it included a taste so bad it made me sick to my stomach. The nurse said, "stick out your tongue." Then "Have you eaten anything orange?" I said no. She said "hmmmm" and got another nurse. And another one. This was in the chemo room, which is about 10' x 20' and had 6 patients, plus family, plus 4 nurses. So PDQ my tongue had been examined by 4 nurses, the lab tech, the receptionist, 7 Little Old Ladies, 4 LOMen, two doctors, and a drug salesman. Everyone except the salesman thought a bright orange, fuzzy tongue was kinda cool. He looked a little queasy, but since everyone else was looking, WTH. Finally I told the doc "The words you NEVER want to hear from your car mechanic or cancer doctor are 'Hey, everybody, look at this!' " That broke him up enough to tell me I had Thrush, which is common to babies and chemo patients. It's a fungal infection. But he'd never heard of orange, its usually white.  So I spent the week with mouthwash, anti-fungal drugs, and everything tasting like burnt paper mache. But I'm over it now. And probably the feature topic in next years "weird cancer patients" seminar somewhere nice like Cancun.

For the record, the second thing I asked Good Doc Levine is "will bendamustine give me thrush?" (NO! was the answer, so I said to go ahead.)

Thanks again to all of you,

Yours in Getting Better and Better In Every Way Every Day,

Kevin