Being the 1%

Summary

One of my favorite TV characters, John Astin, as Buddy with the best catch phrase ever. A staple in our household, Sandy and I use it at least monthly.

When we last left Kevin, things sucked. Now they're wonderful. By Sunday evening, I was "feeling much better now." Monday, slow and steady, worked all day. Tuesday better, today it's like rolling the clock back a month. Had a long talk Monday evening with the oncology Nurse Practitioner, Katie. She's thinking my total energy suck was maybe due to the blood booster, NuLasta. I've had it dozens of times, but either the 5 year gap, or something, maybe that was the reaction. Unfortunately, it's "lets try again and see what happens." 

Thanks to Rory, Stacey and Anna who came over Sunday and fixed my broken pool pump.

So it looks like I'm good to go until Cycle 2, first week of October.


Cancer By The Numbers

Warning: Philosophy Below.  Don't read if you can't stand squishy thoughts and pseudo math.

Ask any insurance agent, we are a very predictable society, as a large group. Odds of being injured in an auto accident, odds of being struck by lightning, you name it, there's an actuarial table for it.

Trouble is, those are all going to be high on goodness, low on failure type numbers. Cancer numbers tend to be a lot more centered around a mean of, say, crap.

My chance of getting my particular kind of lymphoma is 4% of 4%. Most of the other 96% of the 4% are pretty curable. So once you go down the "low odds" rabbit hole, life gets interesting.

When diagnosed with Mantle Cell in 2005, conventional medical wisdom using scientific, peer reviewed studies, said that even after RCHOP and an auto transplant, my odds were 50/50 of making it three years without relapsing. So in 2006 when I got done, I was hoping to make it to 2009.

But let's look at that. In one of the epiphany moments of my life, sitting there doing what ALL cancer patients do, which is to Google "<<my cancer type>> survival rate," Sandy tagged me with a life long (literally) goal. "What says," she asked, "you can't be in the RIGHT part of the 50%?"

Bingo. Thus began the crusade. I did every single possible thing. Became a lay expert on my disease. Became addicted to ASCO.com.  Contacted the German doctors doing the leading edge work. Then the English, doing 2nd rounds. Then the Canadians, doing 3rd phase. I already was pushing the U.S. system ahead of the FDA since I'm "rare." I took a radioimmunology pre-treatment (2nd one ever at Moffitt, first for that drug.). Took maintenance Rituxan AHEAD of the formal U.S. paper presentation.

And it worked. Plus the science kept going out ahead of me. By 2007, I had a 60/40 chance of not relapsing before 2010.  By 2008, I had a 70/30 chance. By 2010, I had an 80/20 chance of not relapsing before 2012. Which I didn't.

However, at the end of the rainbow is a chunk of solid ground. And the gold is deep under it, to coin a metaphor. (Anyone who understands these two lines is my friend in weird humor.)

So now it's 2012 and all odds are reset. I was barely in the 80%. The treatments I'm doing have a 80+% chance of putting me back in full remission, and a 90+% of at least partial. For how long?

Hmmm .... good question.  I caught up to science. So far, this regime hasn't been standard of care long enough for many people to die. Which is a weirdly interesting concept to cogitate. Plus, for the maintenance Rituxan treatments I plan to use, it's all anecdotal. So damn the odds, full steam ahead!

So, on the negative side, I'm tbd% of 80% of 4% of 4%. On the positive side, who knows?

In life, we all understand the 80/20 rule. Whether in PTO, Band, clubs, or churches, 20% of the people do 80% of the work. Sandy and I have always tried to be part of the 20%. Investing in life around you pays dividends. Being remembered as the "nice customers," the "always there people," the "always a pleasant word" person, moves you into the top 20%. It's not that hard, it makes you feel good, and it pays off in life.

So what about this 1% thing? Outside the blatant, pandering eye catching use of a currently socially popular phrase?

How do you further yourself from the 20% to the 5%? Or even the 1%? The two simple secrets to success, as they say in the infomercials, are amazingly easy. But, like the reality is, it won't work for everyone. Say about 95-99% (do the math, duh). But it works. And in the internet age, it's gotten a LOT easier.

Secret 1 - say yes. "Hey Kevin, want to go to xyz?"  Yes. "Hey, Kevin, you seem to be a guy that likes to do things. Want to pdq?"  Yes. See cool thing, tell yourself yes.

Secret 2 - talk to people. Nicely, respectfully, without fear.

NOT BRAGGING. Which means I am. A few things I'd have put on a bucket list if it wasn't invented late in my life:

Be inside a Space Shuttle. (dozens of times)
See a rocket launch (hundreds)
Get to know an astronaut (lots)
See the Hubble Space Telescope, Galileo, Magellan, most of the ISS (done)
Become friends with a millionaire. (Quite a few)
Sit at a table with 6 major SF authors and chat (done)
Be a fully suited crash test dummy for Shuttle evacuation drills (done)
Have a socially cool hobby and win the respect of many with it (fighting combat robots)
Save a life (still working on this, I'd say part credit 4 times)
Make a life (4, all awesome)
Work on Columbia recovery effort (done)
Have a cadre of true, solid friends with deep personal integrity and weird senses of humor (done done done!)
Sail through the Golden Gate into deep ocean water (done)
Build a house (most of one)
Build an in ground pool by hand (done)
Survive in the wild (done, for a short while)
Drive across the U.S. (three times?)
Publish books (3 so far)
Be a newspaper columnist (12 years)
Be published in magazines (100+)
Be respected among my professional peers (humbly, got to say yes)
Be a good husband (so far, so good, I think, 28 years)
Be a good father (ditto, 27 years)
Be a Godly person (probably 50/50 on this one!)
Speak in front of large groups (more than I can count) 
Hold a piece of the Surveyor spacecraft from the moon in my hand (done)
Present as a subject matter expert on starships at a DARPA conference (faked my way in)
A bunch of other stuff I'll think of after I post this (to be done)


See where this is going? All of you have a list like this. But completely different. Make it your mission to grow it in length and coolness by saying yes, looking for things to tell yourself yes to, and talking to people. On the internet, in person, on the phone, play "who do you know" and build that network. It is completely surprising how many important and/or expert people will communicate with you, if you're not an idiot about it.

What about the opposite list: stuff of badness? Got that, too. Anyone can play "my life is worse than yours." In fact, my list would be right up there, not counting the obvious here.

But that game puts you in the 80%, or maybe the bottom 20%. Stay away. There be dragons there.

In another post, I'll talk about the zen, or schizophrenia, or bilateral nature, or inside out nature of living with cancer. Here, I guess I'm trying to balance the 1% chance of the suckyness I've fallen into with climbing to the 1% pinnacle of being That Cool Guy.

And with that line, I gagged my kids, chuckled my friends, and gave my detractors ammo.

God Bless and Good Night,

Kevin

Treatment 1 of 6 Complete

This will be a short one. Just personal stuff, the science will have to wait for another day.

Tuesday, as already posted, was a long day. Slept quite well/drugged that night, went to work on Wednesday for half a day, didn't feel bad at all.

Wednesday's treatment was only 2 hours, no issues. Wednesday night, no sleep at all. Dozed occasionally, but mostly sat up and read or thought about life & how long a night can be.

Thursday put in almost a full day at work, felt pretty good. Went in at the end of the day for a shot of NuLasta, a white cell booster. Thursday night, again, almost no sleep.

Friday things changed. Went to work, started running down, wound up with that "energy loss" they'd mentioned. By the time I got home, it was a struggle to walk from the car to the house. Laid around, finally went to bed, slept very well.

Today, not even that much energy. I went outside for a while, moving a chair a few feet ran me out of breath. Later, tried to walk to the mailbox and it was a long, long trip.

So today has been a day of lying on the couch, watching football, hoping things pick up in a day or three. My family is amazing, helping in every way possible, as supportive as a Husband/Dad/person could ever want.

Can't end without at least a joke, though:


What do you call bugs with cancer? MalignANT and BEEnign.

Riding The Chemo Express

"Riding my train, high on Bendamus-tine"


<<administrative note: I think I enabled the ability to comment on this blog>>






With apologies to old rock bands. Today I had my  first trip with Doc. Levine's Magical Mystery Cure. Overall the day was long but went well. Got to Space Coast Cancer Center right at 8:15, left at 5:40. Took till 9:30 before I saw Levine, quick checkup then upstairs to the infusion center (i.e. The Chemo Room). This is a very large room, maybe 30' x 80'; with two long rows of recliners, guest chairs, nurses station, etc. Was completely full, maybe 30 patients getting treatments.

Started the pre-treatment for Rituxan at around 10:15. This is mainlined Benadryl, 500mg I.V. Which makes a person about as intelligent as a tree stump. Gives you the Thousand Yard Stare. After that's in, and you've taken some Tylenol, they slowly start the Rituxan. As this is an artificial antibody (a protein) your body isn't always thrilled with the concept. The pretreatment is supposed to prevent the body from rejecting the foreign protein, by making it a blubbering idiot, at the micro level as well as the macro level.

Even though I've had Rituxan 12 times (2005-2007) my body turns out to be pretty darn smart. Yup, it got angry at the invader and tried to throw it off, literally. If you've never had uncontrollable chills, about halfway to an epileptic event, think about those mechanical bulls you see on T.V. in cowboy bars. I was sitting on the throne in the bathroom when it hit, and was barely able to make myself decent and call for help. I put my knuckle in my mouth to stop my teeth from crashing together. They stop the Rituxan, give you MORE Benadryl IV, believe or not, Pectin, the fruit canning stuff, more tylenol, blankets, hot water bottles, and time for it to stop.

One I was over it, we started again, and no problems rest of the day. Nurse says people who haven't had Rituxan in years can do this. Confirmed. 

Rest was just sitting in a recliner for 7 hours, sometimes coherent enough to read or email or text, other times watching Channel 13 (6 news cycles per hour, all day. Gack.). And listening to annoying old people talk annoyingly loudly on cells phones about trivial things for 2 hours at a time. More Gack.

On the other hand, I ALWAYS hear inspirational stories, am blown away by the casual, everyday courage these folks have, and hear people talking about God right out in the open like it's a routine thing. Which it should be. You can spot the poor, new folks right away, they and their spouses have a bewildered, shell shocked, hesitant look and manner. My heart breaks for these people, many of them my age or younger. Getting cancer sucks like a 10 horse shop vac, and "the whirlwind" I mentioned before is a staggering life event that makes strong people weak, and weak people helpless.

Was great getting the bandage off my surgical site. Chest hair growing under a tight bandage was actually a form of medieval torture.

Tonite I'm a bit tired, not too hungry, ready to kick back at home. Slightly thick headed, (shut up. Just don't say it!), ready for bed in a while.

Tomorrow, 2 hours of Bendamustine, quick visit with surgeon to check the incisions, off to work.

So the process of kicking Cancer's butt began today.


Today's Funny

This isn't the treatment. This is the stuff to mitigate the potential side effects of the treatment. Some of it you take two times a day. I have a basket left over from last time, it all barely fits in there.

Going To The Mountain

Summary

Today my cancer center, Space Coast Cancer Center, a Moffitt affiliate, held a Lymphoma seminar. One doctor from Moffitt, three from SCCC, and a hospital head Chaplin spoke. The Moffitt doctor, Dr. Bijal Shah, is one of Dr. Sotomayor's research scientists specializing in MCL. He gave a very informative presentation, modified due to our communications last week; he and I and Dr. Levine consulted together for about 15 minutes; and then he and I spoke for almost 45. As a result, Dr. Levin is going to modify my treatments to align with next year's protocols. This is mostly in the area of increasing safety/reducing risk of side effects, but also includes a major improvement in my future, overall treatment plan. Thanks to Linda Bradley for sponsoring, Shannon Simmons from SCCC for setting it up, and Dr. Levine for just being him.

Three Pages of Notes and One Page of Conversation

I'm skipping a LOT of very scientific stuff. Please email me if you want that part and I'll try to decipher my notes.

Dr. Shah studied Neuroscience, Zoology and Religion at UF; Pediatrics at Duke; and Oncology at Moffitt. He is now a full time Principle Investigator/Researcher. He is very young, very pleasant, very conversational, and VERY smart.

He has one patient with MCL, still going after 15 years. This is 5x the median survival. All the presentations I saw now talk about three stages or types of cancer, not the old two types. They've added an "intermediate" type between Indolent and Aggressive. MCL usually falls more between Indolent and Intermediate, making it hard to treat. Indolent cancers just grind along, and since they are slow growing, don't respond well to chemo. There is no "standard of care" for MCL, it's all experimental. (Note: Insurance companies DO have an SOC, even if the researchers don't).

Indolent MCL has a median survival of 150 months. When it turns to Intermediate, that falls into the 5 to 8 year range. There is no good indicator to predict when someone's indolent might turn on, becoming intermediate or aggressive. However, something called the HDAC11 protein is a possible indicator, and he analyzes this on all his first time MCL patients to see if he gets a clue. HDAC11 inhibitors are the next great frontier in MCL treatments.

Rituxan, the miracle monoclonal artificial antibody, doesn't work for indolent MCL. Which I don't have anyway.

He sees autologous transplants as really not a transplant at all. It's a way to give someone maximum chemo, then recover quickly from not having an immune system. I always said it was like reverting your computer to factory settings, turns out that's a pretty good analogy.

80% of people make it 8 years with RCHOP + auto transplant before relapse. I only went 6.

Current research shows people who get continuous maintenance Rituxan after RCHOP do exactly as well as RCHOP plus auto transplant, 80% at 8 years. So why do the transplant at all?

Well, something called Rituxan Fatigue is real and two sided. First, people get tired of going to a sad place full of dying people, being drugged and poked every two months for years. It wears on your psyche. Second, your body does eventually break down under the Rituxan, and your white blood cells get trashed. Some people can go longer, some less, but sooner or later this becomes a real factor.

He is an expert in the vaccination technique. It's not available for me this time, as trials won't be available for months as they're in an evaluation period. How it works is they take your cancer cells, irradiate them, and reinject them. Somehow this teaches your body to fight the cancer, and increases the duration of first, second and even third remissions almost double. This is a strong candidate for me next time I relapse.

An item of good news. The "transplants must be done by 65" rule is bogus. It depends totally on your health, not on age. 

He and Dr. Levine talked about what risks I might have, given my "unique" treatment background. One is that my kidneys could get clogged with dead cancer cells, since Bendamustine kicks serious cancer butt. He's putting me on a kidney unclogging drug I can't remember the name of. Second, he's has a number of patients recur with shingles. I had this, and it sucks. So that means an antiviral medicine. Third, infections. So I get an antibiotic, and an anti-parasite  drug. This covers every problem Dr. Shah has seen in any of his patients.

What Does This Mean For Kevin?

First, he's VERY sure the Bendamustine/Rituxan combo will put me solidly back in remission, and the Rituxan maintenance will keep me there a good long time. Yeah Science!

Second, my risk of nasty infections or shingles will be less, ditto kidney damage. All because I went to a seminar and got my doc with a wizard, to talk in the back of a hotel ballroom.

Third, by the time I fall back out of remission, either vaccine therapy, or HDAC11 inhibitors, or one of a bunch of other promising treatments will be on line.

Fourth, this guy wants to keep talking to me, and seems open to very responsive communications, not the usual "talk to my nurse" mentality.

This means: 18 weeks of not-too-bad treatments, low side effects, low risk. Every other month I get a not-too-bad IV with no side effects. In 3 to xxx years I do something else. While talking to The Man Behind The Curtain.

I can live with this. 

Literally.

KB

Assimilated

Summary

Had the chemo port installed today, beginning my transformation into a cyborg. Next I'm considering having a 1 terabyte solid state hard drive installed, since my memory isn't what it used to be. No big events upcoming except healing until Tuesday, when I start chemo.

Tedious Details of Kevin's Experience and Upcoming Life (feel free to skip this part)

We got to Parrish at 1230, fairly quickly was called back into the pre op area. Normal stripping, gowning, vitals, etc. followed by a quick chest shave. Can't wait until hair itch starts!

Then, per baseline for any busy surgical day, the waiting started. Sandy and I exhausted the newspaper, analysis of last night's DNC speakers, sports, chatting with people we know (Mrs. Anderson, who in a nice sense of symmetry, was there working the unit the last time I had a port put in in 2005.) After sitting in pleasant silence for a long long time, we were visited by the anesthesia doc, my nurse anesthetist, then a different nurse anesthetist, the surgeon, the OR nurse. Then we waited more. At around 3:30 I got rolled back, went lights out, then woke up feeling like a large cross bred animal had kicked me in my left pec. Wow. Different than last time.

First port was in that little hollow between the collarbone, shoulder, and pec muscle. Just under the skin, nothing with the muscle. That made it, for the whole 15 months it was in, hard to sleep on my side, rubbed on shirts and seat belts, and basically just inconvenient. So Doc Zambos and I agreed on a lower site this time. When I asked him howcome this time it hurt like crazy, he mentioned that he used a, wait for it, "Tunneling Tool" to route the catheter tube through the muscle. There is no possible way to reconcile the terms "pectoral muscle" and "tunneling tool" without including the words "wish I'd known that ahead of time." Still, in a week or two, the whining will stop and hopefully this will be a better location that I have for a LONG LONG time. Why? Two more words: "Maintenance Rituxan." Protocol says take Rituxan for 2 years, just talked with a doc that has a patient still in remission after FIVE years of Rituxan and still in remission.

In other news, continuing my fully justified trashing of everything Moffitt except the scientists, after three weeks of no communication from the Transplant department, who was supposed to schedule an appointment with me immediately, Sandy got a call "reminding" me about my appointment next Thursday at 8am. Issues?
a) I'm in treatment at SCCC that day
b) We had no clue an appointment had ever been scheduled
c) They continue to schedule out of town patients appointments very early in the morning. So we'd have to leave home at 5am, drive through rush hour traffic in TWO major metropolitan areas, plus I-4.
When we got home from OR there was a confused message from a different person at Moffitt saying she'd heard we might have a concern about this. Yup, check that box. For a Human Spaceflight Operations professional, these bozos don't even qualify as rookies. To use one of my favorite analogies, these clowns couldn't organize a one car parade in a one stoplight town.

The Science of Cancer

To loosely quote my buddy Kurt. Chemotherapy will, in a few decades, be looked back upon as a horribly crude and totally medieval form of medicine, right in there with  trepanning with stone axes to let evil spirits out, bleeding by barbers, and amputations with a bullet between the teeth for pain. In a future post, I'll talk about the positive developments in cancer treatments, as opposed to chemo. In this installment of TSOC, I'll use layman's terms to explain chemo. To any medical professional reading this, I apologize in advance. To those who know me well, I'm just following my normal, straightfoward, (ie blunt) way of communicating with a fairly low BS factor.

Remember a few posts ago, where I compared cancer to domestic terrorists? Well, let's take that further. Say a militant radical domestic terror group gets established in Orlando, maybe a few thousand violent nut cases among the 2,000,000 people living in Orange, Seminole, Lake and Osceola counties. These thugs are tearing up the town, lighting off car bombs, maybe making homemade anthrax, and generally being Bad Bunnies. Plus, they are spreading, and pretty soon Tampa, Miami, Jax, and even Atlanta are next.

What to do? These people look just like the rest of us, don't wear uniforms or gang emblems, and have no central HQ. Well, using our cancer analogy, the "standard of care" to clean out these bums is straightforward. Lob in a few neutron bombs. Nice and clean. All terrorists dead, trees and buildings intact. Heck, even the Mouse is ready to reopen undamaged. If you're out of neutron bombs, a nice nerve agent, or maybe a limited biological weapon would do the trick. Dead terrorists, no problems, right?

What, you may ask, about the 1,998,000 dead innocent civilians? Well you OBVIOUSLY can't do simple math. There are 300,000,000+ people in the USA, and more born every day. Less that 1% were toasted to save the whole country. And, we're a lusty, prolific, and migratory people. Wait a while for the bodies to decay, and in 3 years you'll never know the society was sick at all.

Chemo for cancer is actually just like this. Truth time that most doctors won't bluntly tell you. Chemo is poison. The job of the doctor is to calculate the maximum amount of poison you can stand without actually killing you. The next time, he/she looks at your remaining amount of health, recalcs the dose, and poisons you again within, literally, an inch of your life. Repeat until you can't stand more. Hope all the cancer is dead. Wait and see. If not, repeat until cancer kills you or chemo does.

Brutal? Graphic? Negative? - yup. But, under the theory that most people think dying basically sucks, we'd rather get poisoned.

However, as you will read in my book, there's a lot of non-brutal options here and coming. I've had a few, will have more. The goal is to keep pushing victims lives out longer than the cycles of research take. In the chemo world, I have many more choices, more effective and less nasty, than last time. The regime I'm going to have is 2/3 less nasty than what I had last time. So, between that and some really neat stuff I'll talk about next post, things aren't always going to be nearly as ugly as the story above.

Horrible Cancer Joke For You Not To Read

What do you call a person who has a compulsion to get lymphoma over and over again?


A lymphomaniac !


Thanks for the prayers, and God Bless You All

KB

Into The Maelstrom - September 4th, 2012

Summary

Preliminary results from colonoscopy this morning show only one tiny polyp. Waiting on biopsy results which will take about 4 days to confirm no issues. Met with surgeon, Dr. Zambos, for pre-op session on getting my port put back in. Went to Parrish hospital and did all the pre-op exams and registrations. Port surgery scheduled Thursday. My energy isn't great, I'm getting pretty tired late in the evenings. Nodes in my groin are getting big, sore, and starting to make it uncomfortable to sit in certain positions, like driving a car. It's time to get this show on the road. First treatment scheduled September 11-12th. God Willing, then things start to turn around.

Gory Disgusting Details and Essential (to me) Medical Trivia and Life Events

Why the colonoscopy? Well, I had it scheduled anyway. So, Dr. Levine (my crackerjack oncologist) thought it was best to go ahead with it. Not to look for colon cancer, but because MCL often presents in the gastrointestinal tract as well as lymph nodes and bone marrow. So the results of the biopsy will give information about the progress of the disease.

Dr. Rylander, another superstar doc, upon hearing about my changed condition since we met for a "routine, healthy visit" modified the procedure. Usually he would only look in the large intestine for pollops, cancers, etc. In this case, since MCL may show up earlier in the small intestine, he went there and looked. One small polyp in the Large, some interesting but not concerning spots in the Small, which he sampled anyway.

Chemo port is horribly routine to the medical community. Dr. Zambos puts in dozens every week. I gave a link in a previous post about these. I have the surgery on Thursday to put it in. Went to his office for consult (time had changed 3 times). At 4:30 he was done with my, but in his normal take charge way sent me straight to Parrish to catch them before 5 for admission. Then to the lab for EKG, blood work, urine sample, X rays. As I was the only patient in a fully staffed lab, it was Bing Bam Boom done. About 6 daytime hours of lab work/waiting done in under 15 minutes.

In between the colonoscopy and surgeon we bought a car. My Grand Am is just dead, been driving without A/C for a couple of weeks, it leaks like a cartoon house in the rain, and needs motor mounts. We'd test driven a bunch of cars Monday afternoon, so today we ran by and bought the best of the bunch, a 2003 white, four door, Chevy Malibu with 84K miles. So of course as we drove off a window went down but not back up. Good local dealership, they were all over it. Car off to shop in about 15 minutes, will get it tomorrow.

So I'll work Wednesday, maybe some of Thursday, and maybe Friday. Next week it's Chemo Day Tuesday, short Chemo session Wednesday, post op surgeon visit Wednesday, drop in for a shot on Thursday then work, work Friday.


Horrible Awful No Good Disgusting Bad Cancer Joke Of The Day

An Irishman named Mike O'Leary went to his doctor after a long illness. The doctor, after a lengthy examination, sighed and looked Mike in the eye and said, "I've some bad news for you... you have a cancer known as Galloping Leukemia and it can't be cured. I give you two weeks to a month." Mike, who was shocked and saddened by the news, but of solid character, managed to compose himself and walk from the doctor's office into the waiting room. There he saw his son, who had been waiting.
Mike said, "Son, we Irish celebrate when things are good and we celebrate when things don't go so well. In this case, things aren't so well. I have cancer and I've been given a short time to live. Let's head for the pub and have a few pints." After three or four pints, the two were feeling a little less somber. There were some laughs, some tears, and more beers.

They were eventually approached by some of Mike's old friends who asked what the two were celebrating. Mike told them that the Irish celebrate the good and the bad. He went on to tell them that they were drinking to his impending end. He told his friends, "I've only got a few weeks to live as I have been diagnosed with AIDS."

The friends gave O'Leary their condolences and they all had a few more beers. After his friends left, Mike's son leaned over and whispered in confusion, "Dad, I thought you said that you were dying from cancer. You just told your friends that you were dying from AIDS."

Mike replied, "I am dying from cancer, son. I just don't want any of them sleeping with your mother after I'm gone."