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

Cycle Two Complete - With A Dose Of History

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Summary

Cycle two of six complete, not nearly as bad as last time. No adverse reactions during treatments, addition of one more drug to my arsenal (sleep aid) means I wasn't so beat all the time. The disabling fatigue didn't hit either. Friday I was slow but functional at work, last night got further down but not out, and today was able to stroll (not walk) the dog and do a little work outside on the pool.

So, 1/3 of the way through, I'm feeling OK about all this. My family has been, as always, amazingly helpful and supportive. As have my co-workers, friends, and neighbors.

Today's Cancer Science Lesson

At the Space Coast Cancer Foundation workshop I went to a couple of months ago, Dr. Sprawls gave a rather interesting segment on the history of cancer treatment. The French were actually in front, being at the cutting edge of science in the late 1800's and early 1900's. Curie's discovery of radioactive iodine led to attempts to heal thyroid cancer. 

In the interval between the World Wars, it had been noticed that mustard gas survivors, besides of course having lung damage, also had bone marrow issues, and shrunken lymph nodes. This was applied to lymphoma patients, with some results worth following up on. World War II, besides of course driving nuclear technology, also advanced along several major medical lines, such as antibiotics (yes, some cancer is treated with antibiotics); the mustard gas applications to medicine, as well as applying an integrated scientific/industrial approach to R&D.

In fact, Sloan Kettering Institute, one of the real pioneering cancer research centers, was started by transferring an entire chemical warfare research unit from the Army after WW II.

During this time, another common food product, folic acid, (vitamin B-12) also was found to positively affect cancer patients. 

So for years, the only two drugs being used to treat cancer (and still are, or their direct descendants), were a chemical warfare agent and broccoli. (Not exactly, but poetic license is allowed in a blog).

I've been studying a lot about this lately. I figure, hey, it's hardly worth having a major disease if you can't learn something about it, right? Otherwise I'd just not bother with the whole chemo/life stress thing and just not have cancer at all.

One thing I never knew was that the concept of "curing" cancer is actually newer that the space program. Through the 50's, that idea was just laughed about as fringe medicine. In the 60's, there were no oncologists, just whack researchers fumbling around the edges of real medicine. Not until the 70's, when some genius started combining medicines together and seeing results skyrocket, did long term hope arise for cancer patients.

In the 70's, 5-FU was developed as a targeted therapy for colon cancer,  another early heroic and then-scorned effort that is still effective today.

For the total science nerds, or those interested in the history of really smart people fighting bureaucracy in the interest of humanity, I recommend the attached excellent and really long article:

http://cancerres.aacrjournals.org/content/68/21/8643.full


Not So Bad Cancer Jokes. (Help me, I'm running out of material!)


A friend said that when his father woke up from his colon cancer surgery he groggily asked the nurse: "Guess what I am now? A semi-colon!" 

And a non-cancer one, but hey I love "a xxxx walked into a bar" jokes:

A string walks into a bar and orders a beer. The bartender says, "I'm sorry, sir, we don't serve strings here". The string, without saying a word, walks outside where he proceeds to tie himself into knots and mess up his "hair". When he walks back in and asks for a beer the bartender says, "Aren't you the string that was just in here?" "No, he answered, "I'm afraid not".



 Thanks for the prayers, support, concern, help and kind thoughts

KB
 

Cancer is a Binary Number

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Summary

Today was Day 1 of Cycle 2, after this four more to go, on three, or possibly four, week intervals. Good news is that WE HAVE PARTIAL RESPONSE!  PR is the first major milestone looked for, it means the cancer is responding to the treatment. Doc L thinks all upper body nodes are back to normal, and the big one in my left, uh, "pelvis" is way down. At one point it was about the size of three golf balls, now it's more like one.

Next milestone is Complete Response or CR, meaning we've found the Holy Grail of remission. Last time, that came after four cycles, followed by a bone marrow biopsy to confirm, then two more cycles of "consolidation" chemo, which is basically insurance. Cancer treatments follow my own personal mantra, "What's worth doing is worth overdoing."

Tomorrow, a 2 hour treatment, Thursday the NuLasta shot, then hope I don't repeat the truly disabling fatigue I felt on Friday-Sunday last time. I did not repeat the bad Rituxan reaction I has last time, so I'm hoping I avoid the fatigue thing also.

Zen and the Art of Living With Cancer

Cancer is a weird disease, socially speaking. As the title says, it's kind of a 1 or 0 thing. Generally, you have it or you don't. You are in remission or you're not. You're talking about it or you're hiding it. (Ed. Note: there are "indolent" cancers that don't follow this rule, also the "watchful waiting" approach doesn't follow this model either. So exercising blatant editorial license, I'm ignoring them for this philosophical dissertation).

In your family, work, and social life, you feel like a Dr. Jekyll/Mr. Hyde; schizo, multiple personality character. I'm either Regular Kevin or Cancer Kevin.  Regular Kevin goes to work, football games, marching band shows, Publix, Lowe's, and eats out a lot. RK mows the lawn, fixes whats broken around the house, and pretty much does the regular stuff.

Cancer Kevin writes blogs, researches treatments daily, plans RK activities around chemo cycles, talks frankly with friends who ask about it, helps newbies into the process, and tries not to listen the gibbering voices down in Reptile Brain Stem who haunt quiet moments with thoughts of death and dying. 

Regular Kevin worries about his 401K and wonders if it will be enough for a nice retirement in 2022. CK reads the fine print on life insurance policies, moves money from 401K to IRA's to make estate matters easier, and teaches his kids about the kludges that make the house run in case he's not around to do it. "Long Term Planning" is 4 years, not 40 for CK.

Many people live this way, moving through the real world while also living in Cancer Land. Even those who are in remission, or even cured, spend a part of each day thinking about their experience, and fearfully poking the places where relapse might show up first.

It is totally weird to be going through treatments, worrying if they will work, while dealing with broken appliances and weed eaters. My brain works on two parallel tracks, one dealing with every day crisis, the other part evaluating the effects of household decisions on the big picture.

Don't get me wrong. Living as normal a life as possible at home, work, and socially, IS WHAT KEEPS US GOING. Sitting around in misery pit, unstructured and drifting, is no way to live. Last time I learned a valuable lesson. Converting the binary, two track, schizoid lives into a single, productive, integrated, open, positive lifestyle is maybe the single most important thing a cancer patient can do other than showing up for treatments.

Horrible Bad Cancer Joke Of The Post - STOP READING HERE

I'm moving off my primary source, The Furry Monkey , and tried to find a new source. Most had the same jokes as all the others, nothing new. Then I found one, that was so tacky even I wouldn't post them!

So here's a real change. It's a horrible epilepsy joke from a cancer joke forum, with a twist. I'm not saying epilepsy is funnier than cancer, and I don't know anyone who has it to tell me if they have their own joke genre, but this one at least has the advantage of being in horrible taste AND twisted!

Bad Cancer Forum Post: "I was telling that joke about "What do you do if there's an epileptic in your bathtub" (You know: "Throw in your laundry." Ha, ha.), and a teary-eyed guy poked me on the shoulder and said, "You know, mister, that's not funny at all. My son was an epileptic and died in the bathtub."

I was very embarrassed, apologized and asked about his son. I found out he was only six. I asked if he'd bumped his head before he drowned or something, and the man said, "No, he choked on a sock."

Yours in the Yin and Yang of Cancer, 

God Bless You All,

Kevin