The Fork In The Road

 

“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

"Turn left if you find a fork in the road" - Kermit the Frog

"Life is what happens to your while you're making other plans" - Allen Saunders & John Lennon

Before going further in today's post, I highly recommend you watch this video.

Now, two things have happened. You have a major ear worm, that can only be removed by replacing with Barney the Dinosaur's "This is the song that never ends." And, I've successfully set up today's post.

Medical Stuff

This summer, I had 24 radiation treatments to resolve a mass in my groin. The theory was, since I was in remission everywhere else, killing that one spot would fix me for a year or two. I finished radiation in early August, had a CT in early September that looked great, and had a CT/PET in November (90 days after radiation) to confirm remission. But .... (there's ALWAYS a butt) ... no remission. True, the radiated nodes were dead, but in both groin and armpits there were lots of happy little nodes just growing away. (Channeling Bob Ross there, sorry.) So that pretty much sucked like a 10 horse shop vac.

Went over to Moffitt, saw Dr. Shah, he laid out three possible treatments. One is a chemo; Bendamustine plus Cytarabine.  I had Bendamustine with Rituxan in the fall of 2012, it beat the disease back but not all the way.

The second choice is a really good one, Lenalidomide plus Rituxan. This one is an immunomodulator rather than a straight poison. It has a high response rate

The third, which I consider pretty much literally a Godsend (see below) is ibrutinib. Back in the spring, Dr. Shah told me he thought it was The Bomb, and had been pulled from Phase 1 trials since it was just so darned good. They put it on FDA fast track, which is medical shorthand for "months rather than years." Even with the shutdown, they did it good. On November 13, it was approved. My PET results came in on November 14. Thus the "God" reference.

I had also been waiting for years for genetic testing to become affordable (see my book Taking Vienna, which discusses this in 2006 as the up and coming thing.) Late last year it still was on the patient, not insurance, and cost thousands. Well, now, it's "standard of care." That's medical shorthand for "insurance pays." The place that does it is FoundationOne, and their web site says "available December 16." Well, that's for open patient access. Going through a NCCI like Moffitt, it's available now. So on December 6, last Friday, I had a large node removed from my left armpit for testing both by FoundationOne and The Back Room at Moffitt (I am part of a clinical trial where I donate icky stuff to medical lab research nerds.)

That node was not gone any too soon. Just in the two weeks between getting my PET results and the surgery, it grew to golf ball size, was really sore, and messed with my arm movement and worse, ability to sleep on my left side. Taking it out just to fix that would be pretty stupid, but since one had to go for testing anyway, that bad boy was outta there.

The testing should help us make a good treatment decision, plus do something I've always wanted: positively confirm the exact genetic makeup of my cancer. I really believe that in a few years, rather than getting a strep swap, your kids will get a quick genetic test to see which antibiotic will kill their bug. Personalized medicine, or Genomic medicine, or Targeted therapy, (the name is still settling out) will be our future.

So About That Fork?

 Sorry, sometimes I feel like the Fozzie Bear of blog writers. Wocka wocka. The other quote at the top, sort of reflects the result of my treatment strategy - kick it down the road a few years, let the science get ahead of my disease. Which has worked PD well. 8 years so far, on a disease that was fatal at 3 years, then 5, then 8. Now I am finding people with 12 years under their belts. But, The Good Doc Shah warned me this time, the strategy is wearing thin. I've been holding in reserve the Nuclear Option, an allogeneic (donor) transplant. This one has odds I'm not in love with. So a year or three from now, while I'm in remission (next one or the one after) it will be really, truly, decision time. That's why I'm so hot on genetic testing to pick my treatment plan, because, like many things in life, it matters what order you do them in. Just like a fork in the road, the decision I make in a couple of weeks will take me down a road to somewhere. No sign, just a fork.

Life Happens

I've written before about the duality of living with cancer.  You live a normal life, going to work, soccer games, band concerts, walking the dog, buying cars. Planning for retirement, whether to keep or sell the house, travel or vegetate, buying groceries and planning Christmas. In parallel, you schedule treatments around commitments, reprioritize purchases, replan trips, and hold off decisions until you get to the fork.

Since I've had time lately to sit in waiting rooms, I've built a scorecard on what has happened in both lives while I was making other plans. I've had 8 major treatments, 13 surgeries or procedures that required anesthesia, had 28 rides in the chemo chair and 24 on the radiation table, become best friends with the gang in the front office of the cancer center, and lived way longer than I was supposed to, if you believe conventional medical wisdom. Which I don't.

On the other hand, I've watched all four of my kids become adults. One is married and bringing our first grandchild next month. Another is engaged. All four are in various stages of college. I've been to hundreds of soccer games and band concerts, choir concerts, awards programs, shows, and plays. I've had 8 more Thanksgivings and Christmases. Went from my 21st wedding anniversary to my 29th. Went from Shuttle to Station to Orion to my new job on the big booster. Met dozens of new friends, lost a few old ones, and reconnected with family.

And become a cancer expert.

So, once I select a tine in the fork, we'll head down another road, to see what lies ahead. The adventure continues!

Kevin

 

How My Cancer Might Save Your Life

 

“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

My name is Kevin Berry, and I am the victim of a rare cancer called Mantle Cell Lymphoma. About 4% of cancers are lymphomas, and about 4% of those are MCL. When I was diagnosed in 2005, the current treatment gave me about a 50/50 chance of making it 3 years before relapse, little certainty of effective re-treatment, and a significantly shortened life span. Thanks to receiving the best medical care in the world, backed by top notch benefits, keeping right on the edge of medical science, by the time I finished treatment 17 months later, those 50/50 odds were out to 5 years with some hope of re-treatment. When I did relapse in 2012, at 7 years, the 50/50 spot was actually ahead of me. But, more importantly, I had several options for getting back in remission. As of today, I am almost back in remission and at least two exciting new treatments have the possibility of keeping me in long term remission, meaning I can foresee living into the "normal" range for American males.

I give formal and informal talks about cancer survivorship, being an effective patient and advocate, and the role of God versus disease. With depressing regularity, I also serve as the "third responder" to newly diagnosed patients and their loved ones. The book about my first adventure, "Taking Vienna," has been downloaded thousands of times and emailed countless others. This blog is the chronicle of my current endeavors.

There is a formula to public presentations about subjects like cancer. First, you shock the audience with your story. Then you give them information they need to know. You pressure them, undoubtedly incurring guilt, into realizing they need to change their life. Finally, you uplift and encourage them that it's possible. This article is my attempt to distill 8 years of learning, introspection, discussion, research, analysis, and editing into a simple, clear presentation. Disclaimer: virtually nothing that follows can be 100% backed up with scientific data. It isn't meant to be. I am the original science nerd, and the first thing a true scientist learns is that discovery happens by taking odd pieces that don't fit, or are not quite provable, and assembling them into a coherent theory. This is Kevin Berry's Theory Of How To Minimize Your Chances Of Getting Cancer, And If You Do Get It, How To Increase Your Odds Of Beating It. (I need a slightly sexier name, and maybe a pronounceable acronym. That will come to me, I'm sure, in a year or seven.)

How I Got Cancer

 My risk factors were as high as they come. For most of my childhood, I lived with parents who smoked at home and in cars. I spent many years in Texas City, Texas, a chemical plant and refinery town. The air stank, flames lit the night, and when you washed your car you had to pull it into the garage to dry it, before it recoated with fallout. My childhood friend lived at the corner of Texas Avenue and Bay Street, in the heart of the industrial district. We swam and fished in Galveston Bay, eating the fish and crabs. There, and also in West Florida, we treated our yards and played in waste gypsum from the phosphate mines, now classified as radioactive hazardous waste.

In California, my relatives farmed. My uncle was an Ortho rep. His son, my age, had Hodgkin's Lymphoma as a boy. I worked in the orchards and fields, we dusted our garden with powdered bug poison, and hunted for food animals that ate in the seed bean fields, treated for weeds and insects.

On top of that I was an alcoholic throughout my teenage and young adult years.

In 2003, while working on the Shuttle Columbia debris recovery, working over 400 hours in the first month, I contracted a severe infection, Erysipelas , a serious staph infection. While it is fairly well known that severe infections can trigger some types of cancer, it is also possible that cancer was already present, and coupled with fatigue, allowed the infection. Either way, there is some scientific and I have much anecdotal evidence that severe infections may trigger cancer.

How You Might Get Cancer, or Not 

We are bombarded with studies, articles, advertisements, books and memes about what causes, and what prevents, cancer. Chocolate, red wine, broccoli, and certain expensive berry juices cure it. Red meat, plastic bottles, foam food containers, and practically everything not made of all natural materials cause it. Unless the natural materials emit radon, radiation, or bad thoughts. As you'll see below, if I was a betting man, the question isn't "Might" so much as "When." For you or a close loved one.

The first time I fought The Beast, many well intentioned people helped me with information about lifestyle changes. Our family has always believed in nutrition and health, and we probably had a cleaner lifestyle than most Americans. But when faced with fatal cancer, I chose to go mainstream, with great results. Before, I ran occasional 5K races, worked hard, and sort of managed my weight. After, I helped organize and did a couple of mini-tri's; did some 5K's, and pretty much went "back to normal" with my diet. I was just glad to be over it.

Then I relapsed. And went down the science road again, while (partly consciously) deciding "what the hell. I have it again. I'm going to just eat the damned cheeseburgers and fries. What's it going to do, give me cancer?" Then, when it began to look like there was actually hope of beating it, medium to long term, and thanks to encouragement from my incredible wife, I had a sort of epiphany. If I got in remission, AND cleaned up my diet, I could maybe swing the odds a little more in my direction. And with some deep and true hope of living to 65, or 70, or maybe even longer, I was motivated. So, towards the end of this article, are a clear, easy list of things you can do to change the odds somewhat in your direction. The best part: they aren't trendy, they make sense in all contexts (healthy living or beating cancer or heart disease or having more energy or being more spiritual, etc), and they are easy.

Now For The Guilt Part 

I need to make it clear I'm not comfortable with guilt. Giving it, I mean. Having it, I do. Well. Very well. Hey, I'm bred from a long line of solid Midwestern Farm Stock, where both genetically and culturally, guilt has been refined into a Family Value. But I prayed, and meditated, and truly feel I have a one time, God Granted, dispensation. Even though I'm a Methodist. So just this once, I'm going to admit, I don't cause your guilt. You do. Deal with it. (Please!)                 

Do you: Drink, smoke, have some extra weight, exercise too little, manage stress poorly, skip checkups, eat processed foods, drink milk, like sugar, eat and drink foods with preservatives, go outside, use lawn care products, get too little sleep, worry too much, or are unhappy?

Then, if you are male, you have a 1 in 2 chance of getting cancer, and a 1 in 4 chance of dying from it. Women? 1 in 3; 1 in 5.  Actual Science

 Yeah, that's right. 1 in 2 or 1 in 3.


 What if you follow my tips below? What are my odds?

No clue. But better. Your Mileage May Vary. But I know which way the variance will be. So do you.


KBTOHTMYCOGC, AIYDGI, HTIYOOBI  (made you look back, didn't I? I really do need a better name for this)


1. Get the checkups. All of them. Regularly.
2. Change your diet and lifestyle. Just a little bit.
3. Learn the difference between happiness and joy

That's it.

Checkups

My cancer was found during a yearly visit to my allergist to get a prescription renewed. Need to be motivated? Let me give you two ways.

Easy Way: Visit your family doctor. If you don't have one, get one. Have them list the things you need done, including getting an annual checkup. Take that list, get them done, and present it to your most loved one on their birthday. Repeat annually. Here's a start (not all are annual tests, but risk factors and recommendations change):

Annual Checkup
Chest X ray
Mammogram
Pap Smear
Prostate Exam
Colonoscopy
Dermotologist
Dentist
Eye Doctor

Hard Way: Men, don't like the prostate exam? Women, don't like mammograms? I can find you 1,000 people, by name, who would have one daily rather than what they are going through. I personally would take two colonoscopies over a ride in the chemo chair any time. Or seven.

Diet and Lifestyle

I'm not talking a new wave, odd, eat only weird stuff change. In my opinion, if you can change your diet by 25%, you will make HUGE strides towards fighting off cancer and living a more healthy lifestyle. Let's look at that. Say you, like most of us, eat 4 times a day. Three meals and a snack. 28 times a week. Start small and change just one of those 28 the first week, another the second, and in 7 weeks you'll meet the goal.

What change? Easy ones. Say you and buddy go to Fast Food Paradise for lunch. Instead of the Meal Deal, each get the burger. But split a small fry. You'll get enough. Diet soda? Sure. But fill it FULL of ice. If they have the little "soda only" button, put in a bit. Refill? Add more ice, more plain soda, don't top up the foam. You'll wind up drinking a whole less cup each visit.

Portion size. Don't put the food on the table. Leave it in the kitchen. Take a smaller than normal portion, and when done, sit and chat a bit. If you really want more, get up, walk over, take a spoonful, sit back down. Repeat.

Easiest of all? Antioxidants. Take a look at the list of 20 highest anti-oxidant foods. (This is what hooked me).  Good Stuff Good For You  Beans and blueberries. Really. No matter which list you look at, I happen to like almost ALL of it. I add a cup of blueberries to my morning cereal (see below); I eat beans all the time anyway, I love nuts. Artichoke Hearts? Great for you.               

Harder but worth it. Organic foods. You can't do it all, pick your battles and financial impact. Milk must be done. You, and your kids, don't need any more hormones. Produce? We focus on the leafy vegetables; and try to also pick canned organic where possible. It costs, though.

Processed foods? That's where I scored my biggest percentage gain. I ALWAYS ate some sort of less sugared cereal, but still with some sugar, preservatives, etc. Now? Breakfast is shredded wheat. Read the ingredients. Wheat. Just that. I add in frozen or fresh fruit, sprinkle on a bit of stevia, skim organic milk, and eat till I burst. There are 5 of my 28 meals scored. Some of my snacks were always snack mix, I love it. Now I use lots of nuts, dried cranberries, maybe some organic pretzels. Low butter popcorn. And yes, sometimes (often) I eat ice cream. I'm switching to organic and using a little bowl.

Cut down on the amount of meat, especially red meat. Again, you're only looking for a 25% change, not a radical diet. Go organic on the meat, red or white. Plus the price will automatically downsize your intake.

Exercise is easy to increase a little bit, if you don't have a physical impairment. At the store, park far away instead of fighting for a close spot. You say you never have time for a walk, but you always seem to have time for the store. Add 5 minutes by parking out of the fray. Take the stairs at work, at least 2-3 floors up. ALWAYS take stairs down, up to 6 flights. Gravity works.

Motivation time. Remember that "your guilt is yours" deal. I'm cashing it in. I have my own version of the "Scared Straight" program. I've had cancer for 8 years. I've had 28 days in the chemo chair so far, 13 surgeries or procedures requiring anesthesia (for a "non-operative type cancer!); am just finishing up 24 radiation sessions, had a 6 month bone marrow transplant requiring a month in an isolation room, 9 different treatment types so far, and the pain and suffering of my family cannot be imagined. "I don't like to get blood drawn because needles scare me." - heard it. Go find any diabetic, or any cancer patient (one or the other lives on your block) and ask them about needles. "I don't have time for checkups. I hate doctors anyway" - heard it. "You just get sick at the doctor around all those sick people" - heard it. You cannot make an excuse I can't top.

So, if you live within driving distance of me, come on over the fourth Monday of every other month. You and I are going to share a ride on the Chemo Express. If you live farther away, call your local "Infusion Center" and ask to come in and observe. I mean this sincerely and honestly. Do it.

I absolutely guarantee two things, or double your time back in some sort of service from me: You will change your life, and you will begin to understand joy.

Chemo rooms are the most depressing places on earth. Chemo rooms are the most joyful places on earth. You come share any of my 6 hour sessions, and you will see beat up, physically broken, sick, odd looking people. There will be noises and smells and groans. There will be laughter, jokes, personal questions, personal answers, courage in 55 gallon drums, incredibly nice people, and you will see that you don't have a clue what joy is.

Happiness versus Joy

This is on you. I will give you a few clues about what gives me joy. I just added #4 a few weeks ago.

Rainbows - I love them. Always have. Why? Well, first off, at critical times in my life, like when my father died, and during major cancer milestones, one always "happens" to appear. My kids know of my love so much they run and get me, or call me, when they see one. I am The Rainbow Guy. Second, they have no reason. None. Look, I said I'm a science nerd. I know the mechanics. But every other item of beauty in nature, whether you believe in evolution or creation or both, has an ecological function assisted by the beauty. Rainbows have none. They are just pure beauty as a byproduct of physics.

Butterflies - Can't tell you why. I mean, their beauty does have a function. But to me, they are just moving flowers. I never pass one by. The 3 minutes I stand and watch one is exactly the same, and totally different, than rainbow watching.

Caramel Ice Cream Sundaes - proof that God Loves Us. Perfect mix of flavors. Despite my healthy eating rant above, this is part of the balance of life. I'll eat an extra bowl of blueberries, OK? Also, as part of my cancer counseling, and to everyone for a lifestyle change, I prescribe that three times a month, planned but spontaneously, you go by yourself and sit and eat a sundae. Take yourself on a date. So far, most patients who took this seriously have told me it was the best advice they got. Sometimes it's a root beer float, or a banana split. But McDonalds has a perfectly fine caramel sundae, cheap, and on the way home.

Fireworks - just added this. Meticulously planned, very common, socially acceptable, extremely temporary beauty, in a crowd gathered together to waste thousands of dollars on just looking at pretty stuff blow up. Fireworks are joy.

So that's the story, and the theory, and the motivation. I hope it was worth your time. And, just this once, I hope you feel REALLY guilty.

Kevin

Friday, July 12, 2013

So, How'd That Waiting Thing Work Out?

 

“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

ANOTHER long gap in posting, wow! Well, here's what's happened with the waiting game.

Had the Rituxan Maintenance again, this time end of April. No problems, all fine. Late May, went for a long bike ride, soon noticed these large nodes in my "hip joint" (let's just all be adults and call it the groin, eh?) were sore. Kept on being sore. Had another CT, yup they were bigger since the January scan. So the maintenance regime, at best, was only slowing things down. Definitely not regressing.

Went over to Moffitt and saw Dr. Shah again. He suggested radiation to knock those nodes down. Radiation isn't a cure for MCL, nor often done, actually. Rather common in specific locations for more common lymphoma, though. We discussed what other options I have, and what comes next.

Dealing with these major cancer geek doctors, who truly have a passion to cure this evil, can be fun if you have your own head in the right place. Dr. Shah is as caring and compassionate a healer as you'll find anywhere. But, when you get him talking disease rather than patient, he's a real hoot. "What I like about your MCL," he begins ... Basically it responds to treatment, and my bone marrow must be made of silicon or something because it bounces back like crazy from every odd & strange thing its been subjected to.

So we had a bunch of choices. First, the Ibrutinib magic potion continues to be fast tracked by FDA as a "breakthrough drug," doing wonders for MCL patients Latest Press Release .  Won't be out until September, earliest, though Second, there is an oral drug, PD 0332991, which combined with an old chemo, Velcade, that shows great promise. Clinical Trial.  Moffitt is doing this trial, unfortunately, it means driving over there twice a week. Which I would do if I needed to, of course. Better choice from a personal standpoint is a Revlimid + Rituxan approach. Lenalidomide Study. This is a thalidomide derivative showing good promise, and I could take it at my home site of SCCC. And, it's not a chemo, but some sort of immune system activator.

Last choice was to continue to watch and wait. I was pretty sure I wanted to do the Revlimid approach, since it was "let's try another drug and I know how to do that." Honestly, the whole radiation thing scared me a bit. Can't say why, but it sure did.

Well, last last choice is to go for the allogeneic transplant I've been kicking down the road for 7 years so far. Dr. Shah wasn't really pushing that one as much, and I still don't like the odds. BUT I will reach an age/stage of cancer where I've waited my way out of that option, so I don't dismiss it from consideration lightly.

I really shrank away from the radiation option (future pun impending). Never had it, always scared of it, not sure why. Believe it or not, I find the whole concept kind of icky. Heck, radiation is what CAUSES cancer! (of course, so do toxic chemicals, but the Lizard Brain is not a Logical Brain).

Which is why thinking, talking, and researching and taking a few days to think is a good idea. I thought about all my cancer buddies who'd had it, still vertical and coherent (except maybe that lawyer buddy, and hey, let's leave those jokes for another day.) I also did what I am trained to do, when faced with a complication decision, and only subjective data. Analyze dispassionately.

• Fact: In January I had clear CT and PET scans except for the nodes in my right groin.
• Fact: In May I had a CT, only those nodes were bigger, no cancer anywhere else
• Choice 1: Use the Revlimid/Rituxan treatment to try to shrink the nodes, eliminate the residual cancer, either go back in remission or stall the growth until next attempt. (60-70% chance of success)
• Choice 2: Take the radiation to eliminate the cancer in those nodes, putting me fully in remission (90+% chance of success)
• Analysis: Why was I wanting to do another type of infusion? Well, because it's familiar, and can be done in Titusville. Why not radiation? Because I don't know the risks and procedures.
• Answer: Duh.

If I can increase the odds of a 1-2 year remission, with high odds (70-80%) that a preventative brand new, sexy hot designer drug is coming, why in the heck wouldn't I do that?

So Sandy and I met with the Radiation Oncology Nurse Practioner, who is one of the best "explainers" I've ever met. And the RO Doc, ditto. Lots of technical information, summarized below.

They do another CT of me, locating each specific squishy icky part. Then they use "What you NASA guys love"; a CAD program to design the path each radiation beam will take to avoid all organs except the nodes. Their machine has 8 beams rather than the standard 4. They say, other than major research hospitals and universities, no local Oncology center in the US probably has this level of machine. What matters is "rads on target" (my term not theirs). So if you are getting "X" amount of rads; this machine lets each path deliver 1/8 of it. So soft tissue in the way gets a 1/8 dose rather than 1/4. Only at the intersection (Let's call that The Gang Hideout Where The Evil Lurks) gets the full dose. THEN they figure out what a lethal dose is, there in that little den of hell where my "last" cancer lives, divide it by the number of safe doses for my good tissue, divide that by 8 paths, and voila - 24 treatments to get the proper sized "bucket 'o' rads" to the node. Radiation accumulates over time, so whether you get it all at once or in eyedropper fulls over time, same effect. If you don't need bowels, bladders, bone marrow, and those sensitive gender specific things we aren't allowed to teach about in school because Adam and Eve were naughty. If you every want to pee, poop, make blood cells, walk, and, uh, you know, again, it's better to do it in 24 daily shots rather than 1 dose!

So I decided to press with radiation. Went in, got the simulation. They draw sharpie X's all over your nether regions. Then they fire up the "hologrid" (yes my Rad Onc Nurse Prac is a trekkie I think). A grid of laser lights makes you into graph paper. They X you, shoot the CT, send you home to get sharpie marks all over your clean white sheets for a week unless you wear Ward Cleaver's pajamas.

A few days later they do another run. You get back on the machine, they run their CAD program (no radiation) as a full dress rehearsal. At that point you get tattooed with little classic green ink dots at each "X". Then you can scrub off what sharpie has ruined your PJ's and bedding. (Not that anyone is upset about than, no sir.)

Last Monday was supposed to be my first treatment. Computer broke. (NOT THE MACHINE they were quick to tell me.) Tuesday, computer broke. Wednesday the magic happened. As expected, quite the anticlimax. You lay there, not moving. A big disc moves around you, stops, buzzes, moves. 8 times, 5 seconds each. Done. Thursday, ditto. In and out in 15 minutes. It's almost scary how invisible and undramatic it is. Radiation can't be smelled, seen, heard, or felt. Which is why they have such strong safety procedures. And a lot of people involved.

And, while they do preserve your modesty as much as possible, lets face it.  A washcloth over That Area of a 55 year old cancer guy isn't exactly like Tarzan's little leopard skin! And no big knife or tooth necklace. But between all the young ladies and men being total professionals, and my 8 years of being a Cancer Test Dummy, there's not a lot of "who cares" left in that area.

When we had realized the Rituxan wasn't holding the line on progression, nodes were still growing, We had a month or so to get to Moffitt, make decisions, etc. Well as that went by, appointments were held, processes proceeded, I started to get a swelling in my thighs, basically big soft lumps under my skin, that would come and go. I'd had these last year, and since the timing ALWAYS went with when I'd gotten mosquito bites, I assume some weird allergy/cancer/treatment reaction. FINALLY got an answer this year. Lymphodema, which means, in highly scientific jargon, "lymph nodes clogged up."

As the cancer grows, the passages in the nodes restrict, the fluid backs up, and leaks out just like that A/C drain that flooded our garage on July 4th at 11pm! So Good Doc Levine gave me, oh joy, more steriods to take. These open things up, and also are somewhat specific to lymphoma (The "P" in "CHOP-R".)  So swelling is down, moods are iffy, and sleep is stressful.

And I'm alive, working hard, doing things with the family, writing articles, blogs, going to Orlando City Lions pro soccer games, and being as normal as I ever have. Can't argue that.

Back in 2005/6; I took a large dose daily for 5 days. My family used to cheer when Pill Five went in each three weeks, "because now Daddy can come back." Rugged on your psyche, moods, sleep, and eating.  This time, its only 40% of the dose but still a bit destabilizing. I'm doing well, mostly, but am balancing steroid buzz with sleeping pills to get about 5 broken hours sleep a night. Will need this until radiation kicks in, hopefully in a week or so, then can gradually back off the Performance Dehancing Drugs.

Next post will be a draft article I'm working on to kind of sum up What I've Learned From All This.

Love to God, my family, friends, and interested Readers

Kevin

Interregnum - Watchful Waiting

 

“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

Sorry for the long gap in posting. Many reasons, which actually have a lot to do with the current state of our health care system, and (despite my VERY open public posture on my disease) a lingering concern about discrimination against cancer victims.

First, the medical summary. I finished Cycle 6 December 26-28th. Another normal, regular treatment, nothing special. Was truly glad to have it behind me. I was a bit concernecd about the size of the nodes in my groin, still bigger than they used to be before this flareup. Doc thought they might just be scar tissue, since that's where things presented this go round. Had a CT scan in January, the results concerned the radiologist. Turns out they have an index for the size/reduction after chemo, and several of mine fell above that. Had a PET scan next. PET shows metabolic activity, and since cancer is very high in this, active cancer shows up as a "hot spot" on a scan. Well, a couple of my nodes still had some activity. This was not a great day for me, it must be said.

Thanks to Dr. Levine, who is amazing at discussing this type of thing with me, he understands my preference for direct, medical discussions while being obviously concerned and even upset by the news. Dr. Shah over at Moffitt was on it, responding to my emails, late at night, within the hour. He wasn't nearly as concerned as I was.

Why? Well, he has LOTS of ongoing, very positive treatment options. He considered my current state controlled enough to press on with Plan A, Rituxan maintenance even though I'm not completely in remission. He wants to wait on the more aggressive, progressive things until my disease is "bulky" again, if ever.

He worked with his nurse to get me an early appointment over at Moffitt. His meeting with me and Sandy was very positive. (Right out of the chute, when he walked into the room, he apologized because he realized he'd left an email unanswered, a few weeks before. Got to love this guy.) Just since we'd chatted by email a couple of weeks before, he's had such great response from a new, cutting edge Phase 1 trial, he's stopped any other treatment for all his current patients and moved folks onto that one! 

WARNING: MEDICAL TECHNICAL INFORMATION FOLLOWS!!!!

The latest wonder artificial monoclonal antibody, Brentuximab, or SGN19A, is similar to Rituxan, but instead of targeting the CD20 genetic marker, it goes for CD19. Combined with Velcade, a chemo drug, it's being moved rapidly along in the normally conservative Phase 1 clinical trial process. This isn't the same trial Dr. Shah is doing, but similar, with a lot of links at the bottom:

 

http://inclinicaltrials.com/burkitt-lymphoma/01786135.aspx

 

I've had one of the 60 day cycles of Rituxan, on February 28.  The plan is to do two more, in April and June, then have more scans. At that point, there are two branches in the decision tree. One, there is less activity, or none at all. In that case, continue maintenance Rituxan for as long as it helps. Two, things are worse not better. In that case, we move to something like the trial above.

 

Now, the emotional side of things. I was not happy, to put it mildly, to still have active cancer. The normal grieving cycle happened, and I had the usual lots of support from my family, friends, and co-workers. Sad to say, I'm getting used to this. After about a month, I did have a minor epiphany.  (Epiphan-ette? Epipha-lite?) I have officially moved from ever being cured, to being in a chronic condition. Once I approach it from that perspective, it's really no different from having diabetes, or many of the cancers my friends are living with. I've been doing this for 7 and a half years now, so going for another 7 and a half, or 15, or 30, is just something to do. Science is moving very fast, thanks to huge learnings from the Human Genome Project, which I've always said will prove to be as big a revolution as the Wright Brothers, television, or the internet.

What made things to difficult to handle was my job situation. As I came out of my treatment cycle, I knew our contract would end in March, or maybe as late as June. I'd figured on being "done" with cancer, and could focus on helping my team find jobs, extend things as long as possible, and find something for myself as well without being in treatment.

Instead, I still had the damned thing. On the advice of my family, and several good friends, I decided to suspend posting on this blog, not mentioning the whole "not in remission" thing. I didn't feel good about it, and truly if I was a single man, I'd have been loud and proud about it. But, having a family who needs my income, and more especially, the benefits, I suppressed my normal public profile and ran under the radar for a while.

 

I was truly and wonderfully blessed in February to be interviewed for one of the few jobs in the post-United Space Alliance contract that Jacobs won. (500 jobs, 7,000 people applied, 21,000 total applications!)  I was OK with interviewing with cancer because the men who were considering me are both close friends, and knew about all this. However, it worked out that I interviewed for a different job, with someone who had no idea. I struggled with what to say, went through the interviews, and waited for a long long week, not knowing what I would do if I got an offer. If their benefits would not accept pre-existing conditions, I had no idea what to do. I was in active treatment. Medical benefits are in the purgatory of full implementation of the Affordable Care Act. Most major insurance companies are in voluntary compliance, but not required to be. Worse, Life Insurance, Short and Long Term Disability, and other benefits are NOT covered by the ACA.

I got the job. Which was a huge relief. Before accepting, on a Saturday, I called their HR rep and discussed the issue in a generic fashion. "I have a family member with a chronic, expensive, medical condition." She assured me this was no problem. On Monday am, when I signed the offer, I asked again. No problem. That evening, I started my new job, for free, while doing my old job during the days. We had about 3 weeks before contract start, and all of us in management worked nights and weekends to get things set up. Somewhere in there, I had a chat with my deputy director, a local man who knew me casually. He remembered my award back in 2006 for coaching an OM team while in treatment, and thought the whole thing was none of anyone's business except mine. What a relief!

Still, until I signed the benefits packages, and worked very openly with the new HR reps, I was under considerable stress. Not to mention working 80 hours a week, just off treatments, while worrying about active scans and treatment paths and visits to Moffitt. And trying to hire as many of my current team as possible, while watching the USA contract unwind. Came March 1st, I was quite relieved to go to my new job, with benefits, with 5-10 years job security.

Last week, I went in to the cancer center for a port flush. I handed them my new insurance card, waited, and got a call from their insurance rep. My insurance has a pre-existing condition clause, I'm told.

Thud.

I was so upset I just walked out and sat in my car. Luckily, I had my benefits info in my briefcase, so I called up to Huntsville and talked to the benefits rep. He was livid. He actually cursed. I have, he said, a policy with full coverage and no pre-existing condition clause. Don't worry, he will take care of it. Damn the insurance company anyway, he said.

So now we wait for things to settle out. Hoping it comes out all right. Hey, stressful living is what I do!

In the meantime I enjoy my new job, my family, my friends, and we're even catching up on things around the house.

Happy Easter to my Christian friends. And Happy Easter to my non-Christian ones, too!

KB

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