D.Vadar, new vocab words and other alien life forms

Had copious time in the car driving to/fro Wisconsin this past week.  Here are some personal favorites from phone surfing:

Darth Vadar caught in modern ennui

Pawel Kadysz is in the process of capturing 365 days of Vadar doing regular stuff. More from Kadyz here (he’s shooting one pic per day). Hopefully Darth can appreciate the everyday activities before the “Force Awakens” and his ensnarement in epic tractor beam hoopla arriving this Christmas.

Vader-Reads-a-Book

Vader-Enjoys-Some-Coffee-e1448051509497

taking notes

Wonder if we will get to see Darth doing something “mundane” but with more sinister twist – eg jettisoning empty coke can from the his X-34 Landspeeder on I-70, while texting his dark apprentice a reminder to DVR the Oakland Raiders game. Gonna send a request to Kadysz.

darth reading and driving

 

 

 

 

 

Texting and Driving

Sarah and I were astounded a few times at some of the driving practices on the road.  I’m not claiming to be a perfect driver by any means but it was almost comical to see the swerving and speed changes of those otherwise occupied with other activities than driving, while driving.  Had heard, via hearsay, about dangers but had to look it up just for “fun.” Didn’t cite source below as the sources are prolific.

  • The National Safety Council reports that cell phone use while driving leads to 1.6 million crashes each year.
  • Nearly 330,000 injuries occur each year from accidents caused by texting while driving.
  • 1 out of every 4 car accidents in the United States is caused by texting and driving.
  • Texting while driving is 6x more likely to cause an accident than driving drunk.
  • Answering a text takes away your attention for about five seconds. Traveling at 55 mph, that’s enough time to travel the length of a football field.
  • Texting while driving causes a 400% increase in time spent with eyes off the road.

Seems like more reason to support Google and others efforts to realize self-driving automobiles.  Imagine if they get that right and speed limits could increase as a result of better cyber drivers…200 mph speed limit for automated vehicle drivers only…and 5 hours to Wisconsin or Chicago from Colorado?  Game changing. Check out this fantastic article on the veritable “arms” race between Apple, Google, Tesla and other big car manufacturers to be the first to market self driving automobiles.

In the meantime, there are some different offerings for curbing cell phone use and more specifically texting while driving such as cellcontrol and last year Apple was talking about a new patent to do something similar (not sure where this is currently, maybe getting ready come come to market so news is quiet?).

The texting stats reminds me, kinda, of motorcycle stats…and just glad I did not look this up before we spent hours on the ATVs over the last week.

Then again its all too easy to fall into an “everything causes cancer and/or leads to dismemberment and injury” mentality. Here’s the current list of current and known carcinogens in the name of collective mass hysteria,or not…although I defy you to figure out what half of the list consists of without looking them up with a dictionary or encyclopedia or cell phone (while driving of-course).

New Words

I wish there was a good word for the aforementioned figures on texting, “Gobsmacking” comes to mind but, um, that’s not really a word. Then again, neither are these words, officially yet anyways, but still righteous.

24+ Brilliant New Words We Should Add To A Dictionary

My personal favorites have got to be “cellfish” and “nerdjacking”…the latter could probably summarize 98% of content on 98braintumors.com

Other Aliens

Finally, realize this was “so last week on Facebook” but wanted to re-post this masterpiece from my friend Paul G. Altogether a pretty good likeness I’d say…though the chin could be a few feet longer and now I’m going to have to eat his brains for revealing my identity.

martian

 

 

$10 for the whole thing

Man!  Around twelve years ago I started hitting the heavy bag and lifting weights.  Even though I grew up playing a variety of sports (until I got, err sidetracked with less healthy activities in high school) I had previously resisted pumping iron as being a little too meat-headish. It was therefore a pleasant surprise how much I thoroughly enjoyed getting pumped up (okay sorta, genetics has an unfortunate hand in this) while listening to intellectually stimulating works like ‘Break Stuff’ (yeah Limp Biskit).  With weights I discovered a totally fun, healthy obsession- the perfect activity for the off-running days which provided the same mind slowing, endorphin buzz along with ample justification for supersizing my McD’s french fries.  The only draw back was that I had no clue what the hay I was doing – you know like proper form – and managed to tweak the hay out of my lower back.

It got so bad I considered putting the kibosh on activities like weights, running, combing hair, brushing teeth, and wearing deodorant.  Okay I may have been using the lower back issues as a mere excuse to loose myself of those last three oppressive facets of modern living; but actually, what really bothered me was trouble doing key activities such as standing for more than 10 minutes at a trade conference for work or tossing Connor and Derek’s cute diapered butts in the air (and yes, Social Services, catching him on the way down).

Thus started a gerbil treadmill-style journey involving doctors, chiropractors, yoga, acupuncture, hanging upside down by toenails, dunking myself in heart stopping ice baths, other, repeat, on and on for @ a year. Finally I found this book called ‘Pain Free’ by Pete Egoscue and I can say without a shadow of a doubt that’s the most brilliant 10 spot I have ever spent, EVER.  A ton of things resonated with that read, besides the fact that it worked to relieve the pain while resolving the problem within the next few days and weeks.

Egoscue took a novel approach as far as I was concerned.  He talked about how inactivity versus activity was actually the cause of a lot of lower back problems. Resting could be contraindicated for most conditions; that indeed sedentary/resting in life could yield a sore back, neck, arms etc in the first place. He also put the onus on the person suffering with the pain to do something about it.  In other words, he offered some specific things (in particular his incredibly simple “e-cises”) I could do to fix the problem…with the main ingredient being that I had to do the exercises. Righteousness! As soon as I got past the idea that someone else didn’t need to fix me (this wasn’t/isn’t always easy I think for the way we have been socialized to believe medical practices work…or maybe that’s just me, dunno), life and my back got exponentially better. His rally cry was not surprisingly, “Move or Die.” This meant, maybe, I didn’t have to stop doing some of the things I’d grown to enjoy so much.

All parts of the body he argued were interrelated as a ‘gestalt’ or system. Sitting at a desk 8 hours a day with poor posture could cause the inner thigh muscles to weak and atrophy which, in turn, could cause an over reliance on other muscles which in turn could lead to injury during a physically demanding scenario; hurting a knee could generate a situation where someone starts compensating with poor form when walking, which in turn could lead to a lower back injury (just like misaligned tires causing a variety of problems with car). Curiously enough as my back got better and my form improved, my knee started hurting. I remembered that I had hurt my knee weeks before the original back pain started (and imagined I had started running like Egor or the hunchback of ND, at least subtly, which in turn led to the back pain).

As I’ve said, those 10 bones proved totally brobdingnagian, gigantic even, the best ever spent! Kind of makes you think about the relative nature of money and “value.”  $10 bucks for bowling, a movie, or big salad vs. a life changing, pain relieving solution to a problem that plagued me for the last six months? Crazy relativism at work.  Anyways, I’ve become somewhat of Egoscue missionary- giving away, letting borrow, or sending the link for the book to anyone I hear has back pain.  People who follow his advice seem to get results. For severe cases, some of my friends have even gone to one clinics (in person or online) and also seem to benefit.

So why am I rambling about this? “What’s the point already Leland?”

Besides my need to proselytize Egoscue followers and the obvious parallels to my battle with cancer (research, potential for self-initiatives, experimentation and the belief in alternative ways to solve problems) I’ve been reading things in the news lately that give me pause to think again about health as that same kind of “Egoscuian” gestalt (or idea that natural systems should be viewed as a whole). Specifically as relates to ongoing treatment for melanoma.

PooFirst off, let’s introduce some good old fashioned poopy talk into this discussion…because you know what’s a 98braintumors.com blog if I can’t drop some poo-poo-caca into the diction every once in a while.

Researchers studying the effects of Pembrolizumab (chemical name), Keytruda(commercial name) or anti-PD-1 therapy (the name I was first introduced to during a compassionate use program in LA and am still receiving every three weeks) on mice found that mixing non-responding mice with mice that were responding caused the non-responders to get better.  What was the difference? Well, eating each other’s poop of-course!

The mice were sharing intestinal bacteria by virtue of munching each other’s doodoos. Researchers surmised that such bacteria (Bifidobacterium -the good kind of gut microbes) boost the body’s natural ability to produce cancer fighting t-cells; while also offering provocative explanations as to why certain therapies only work for small minorities of patients (the ones who might harbor good gut bugs). Increasing success therefore might include a study of a person’s inner environment and prescribing probiotics.

I used to swear my old dog Blake’s mission in life was to sample every conceivable form of “waste product” on the planet before he died. God rest his soul, he was highly successful at this. I’d call for him while running and he’d come dashing out of the bushes with a load of horse, deer, coyote, dog, human, whatever tumbling out his mouth. It used to seriously tick me off, especially then when he’d tried to give me a big lick back at the car. Here’s the old guy with Conn.  You know he was looking off camera at a big pile of that brown stuff!

Blakey

Who knows though, maybe the old boy was on to something with these fecal transplants. The big goof lived to 13.5…like really old for a 100+ pound love monster.

Getting back on point, kinda, the influence of the microflora suggests there’s more to drug effectiveness than simply, um, drug effectiveness. It would be great if there was a silver bullet for everything that ails but such articles indicate that there are perhaps a complex series of mitigating factors at work.

Next let’s talk about vitiligo.  That’s what happens when you feel dizzy right? Um no. No wait, its a Hitchcock thriller my Dad made me watch but actually turned out to be cool? Nope.  We are talking vitiligo, as in that thing that M.J. (Michael Jackson) was famous for…among other things.  In hindsight it makes some sense why he chose to wear masks, if he worried about appearance.  I’ve got a mild case on my abdomen as well as chin, characterized by portions of skin losing color as a result of dead pigment cells. What’s interesting about this is that they have linked vitiligo to that drug I referred to above, Pembrolizumab.

Unlike traditional chemotherapy which indiscriminately kills cells (including the good ones). Its an immunotherapy or a drug administered to stimulate the body’s immune system to destroy cancer cells. Keytruda targets the PD-1 (programmed cell death protein 1) pathway or a protein that works essential as a shield to hide cancer cells from detection by t-cells.  T-cells are lymphocytes or white blood cells and are the soldiers pledged to the immune system.  When activated they have a variety of weapons (I think I read something 70 different weapons at their disposal – sweet!) to destroy viruses or mutant cell freaks like cancer. Sometimes however the process causes the t-cells to go after the wrong party. Researches, as relates to vitiligo, is caused by the T-cells targeting melanocytes or the cells responsible for skin color, causing vitiligo.

What’s cool here is that incidence of vitiligo in those receiving Keytruda is also linked to higher survivor rates.  As reported,

“A higher occurrence of vitiligo was associated with an objective (complete or partial) response to treatment (12 of 17 patients vs. 14 of 50 patients; P = .002). The median time to onset of vitiligo was 126 days from start of treatment.”

I had read this before regarding another immunotherapy (yervoy) and it made me feel better about a little skin discoloration; okay maybe even grateful…where before I might have been thinking “great, now this!” My attitude changed for the better. Finding out recently that Keytruda also included the same potential side effects reaffirmed such feelings.

But, in terms of thinking of things as “a whole” what I find even more interesting as I thought and looked at this further was some other research I had done related to vitiligo.  Name, it was reported that vitiligo is often a “comorbid” disorder meaning that it often occurs in conjunction with other disorders (20% of patients) such as thyroid disease, inflammatory bowel disease, pernicious anemia. I’ve had bouts with all three of these things in the last three years. Oh, and by the way, all of those things are listed as potential side effects for Keytruda.

So is the drug causing the issues or the disease?

With thyroid disorders there is pretty good data to suggest that increased levels of TSH (thyroid stimulating hormone) might provide fuel for melanoma growth (search for “Expression of thyrotropin-releasing hormone by human melanoma and nevi” and “Human melanoma cells express functional receptors for thyroid-stimulating hormone”). This data suggests if you have melanoma, you should think about a dosing supplemental thyroid hormone to suppress TSH production. Does melanoma place higher demands for TSH as part of the disease process?Furthermore I’ve read that thyroid issues can cause gut issues as well as low red blood cell counts /anemia.

But still haven’t answered the question.

Who are the chickens and who are the eggs in this story? Which ones come first?

Let’s review, cuz that might help:

  1. Pete Egoscue’s “Pain Free” kicks some serious back.
  2. My ol’ yellow dog liked to eat poop.
  3. So do white mice in cancer research studies (thank you for your service Rodents!).
  4. What’s happening in the intestinal tracks of those receiving immune therapy might make all the difference.
  5. M.J. probably wore masks cuz of vitiligo.
  6. Vitiligo might be a sign immunotherapy is working.
  7. Supplemental thyroid replacement hormone might be a great idea for melanoma patients.
  8. Vitiligo, thyroid disease, gastro intestinal and blood issues might all be caused by cancer treatment, by melanoma, or by each other…

Um, okay, that didn’t really help.

Truth is I don’t have the answers here. I know they are there, somewhere, skulking through the medical darkness, all at work somehow, just not sure how they fit together yet. My suspicion is its probably going to be obvious someday and pretty simple.  Kind of like the fish that swam around the entire ocean looking for water.

Tomorrow I have appointments- with the GI doc and then another infusion at the hospital. Gonna bring up all these parts and pieces and see what the experts think.  Gonna also choose to believe that we will eventually get to another “Egoscue-style solution” and a few simple c(cancer)-cises for $10, to fix the whole of everything.

Xoxo

Leland

PS. Its my high 20-something-ish installment of Keytruda tomorrow. Will also be applying some guided imagery to supplement the process. Thinking ill-tempered sharks with fricking laser beams attached to their heads are a great idea.

sharksdr. evil


Euphoria

 

If you had told me when I was sobering up twenty four years ago, that I could feel good, great, or even euphoric just “being me” I would have laughed in your face. After croaking out a hallow Seth Rogen style laugh, would probably have accused you of suffering from Terminal Cornball Disorder (T.C.D.) and pattered my crazy self away as fast as my crazy paws could pitter. I mean people, as far as I was concerned, didn’t feel good, great or even “euphoric” without extra curricular help. Inconceivable!

Yet the word “euphoric” keeps popping into my head this week. Wikipedia says that euphoria is derived from Greek roots meaning “well” and “to bear.” I read this as “to bear wellness.” I had been thinking about euphoria more as an absence of pain. Yet when I considered the definition and my own ideas further, I realized they were the roughly same thing.  I mean pain and sickness are the antithesis or opposite of wellness right?  So being well and in a good state of health should be considered – and this made me sit up in my chair – a state euphoria.

Over the last few days I’ve found a few things that have helped tremendously with the ulcers and gastritis (inflamed insides).  We’re talking going 3-8 hours without the internal forest fire ablaze in my guts, entire nights spent actually sleeping (what a concept!), and riding to work with the radio off and feeling okay in my own skin. After spending the majority of the last 60 or 90 days living inside the flames, I can tell you that is indeed an apt word for the experience.

This leads me down a philosophical path. Sorry about this.  As with anything here, please take it or leave it as you will. But I’m wondering, “Is this meant to be our natural state?” In other words are we born to a state of euphoria?  Is it only over time, through bitter experience or heartbreak or sin or ego or whatever-you-want-to-call-it, that we forget how good it feels to just be well and breathing?  Having spent weeks in pain I can tell you today that I believe that’s the case.  I believe our natural state, if we are well (clearing away accumulated mental, emotional, spiritual, physical junk), is to feel okay or better than okay…you know like euphoric.

Alright so the fact that I realize these things probably means that I need to buy one of those bumper stickers that suggest “miracles happen.” I’ll slap it proudly next to the newly stamped, custom license plate reading, “T.C.D.”

XOXO

Leland

PS.  We got our biopsies back from the doctors office today. Great news! Neither the pigmented ulcerous tissue nor the inflamed areas of my stomach are cancerous. This looks like a straight up GI problem. We still need to figure what’s causing the problem, but are relieved and grateful for this news.

P.S.S. If you have gastrointestinal issues and want to trade war stories or solutions let me know.  I’ve tried just about everything under the sun and am happy to exchange ideas.  Lately what works for me is slippery elm bark and marshmallow root (a revelation, you can google both) and smaller meals of mainly vegetables…I know sounds simply euphoric doesn’t it!

 

It just doesn’t matter

Had an endoscopy on Thursday due to acute-bordering-on-chronic abdominal pain.  When I woke from general anesthesia I met with the doctor and he let me know that I was the proud Poppa of inflammation in my stomach and a bouncing baby ulcer.  Should have known better and been expecting this surprise- namely because I wasn’t expecting this surprise.

This is one of the near constant lessons of the entire experience, something along the lines of “just when you thought it was safe to go back in the water…”  There are so many twists and turns.  Whenever I’m convinced that I know what the next turn is going to be, there’s a twist in the turn.  Prior to the procedure I was pretty certain that the issue was going to be gallstones.  Those still may be in play, more tests are needed.  But for now we need to address the ulcer.

Needless to say, my reaction to the news was crappy. Like epic crappy.

“Normally,” the doctor said, “ulcerations in the stomach are pink.  You’re particular ulcer, Mr. Fay, is pigmented and due to your medical history this could be melanoma.”  That was all I needed to hear.  Felt like I was pinned to the bed. Next came my typical reaction to this sort of news. I don’t cry or talk or whatever.  I get mad.  And I was hurricane Katrina mad.

Now, we don’t know if it is a melanoma ulceration.  Won’t have biopsy for another couple of days.  What’s more, previous non cancerous ulcers in my gut have been pigmented.  So there is hope and reason to believe that this one will be the same.  Even if it is not something we want, we aren’t talking hundreds of tumors.  There may be more steps we can take.  But I wasn’t having any of that puerile hope stuff.

I know part of it is I am exhausted. Tired of butt kicking.  Didn’t eat for 4 days last week.  Can’t enjoy food – even my crappy sugar free, non-bacon and juicy burger eating, vegetarian diet, such as it is. Tired of trying to maintain some semblance of normalcy.  It’s a lot of pressure to be working, being a dad, hitting all these appointments, trying to be positive along with kind, patient, helpful yeah yeah yeah…  I guess these kinds reactions are to be expected.

But, got to say I’m sick of that too.  Maybe more sick of the sucky attitude than anything else.

The reason I’m bringing it up is because I woke up Friday morning and realized I had to at least try (emphasis on try) to snap out of it. That meant getting up a half hour early in the morning and spending some quiet time and attempting (emphasis on attempting) to get myself right.  It meant trying to attempt (equal emphasis on both trying and attempting) to be helpful to somebody even when I don’t feel like it.  None of that makes sense to me.

But I can tell you, three days later, it works.  I don’t know how or why but it does. Its better. I feel a little better. Have some acceptance going and realized that it doesn’t matter what happens if I insist on an ulcerous outlook.  The attitude is what will make or break whatever comes next and today I choose to believe that whatever comes next is good, thy will be done.

Dunno where these dorky references to “old” movies arise but Bill Murray has taken up a chant in my head.

 

Yellow Thing of Cattle- Free to Good Home

The next time you are at a Chinese slaughterhouse, playing Texas Chainsaw massacre with cow cadavers, prepare to be strip searched. That’s right, remove your bloody jumpsuit, yellow rubber gloves, galoshes, spattered goggles and hard hat.  Open your mouth wide as they probe your alimentary canal (throat/digestive tract) , then bend over and do your best Fletch impersonation (https://www.youtube.com/watch?v=CfZiAiYNcI8) or pray the backscatter x-ray device is working instead.

Alright I don’t know if they go to quite these lengths, but I have read that the abattoirs in China, similar to diamond mines of Africa, carefully scrutinize outgoing workers. What the heck are they looking for? Cut of Kobe (beef not Bryant)?  No- that’s Japan. Flintstones sized slab of ribs? Not that either.

Their prize is far smaller contraband.  Round. Kind of rhymes with “falls” but, easy now, doesn’t start with “b.” We’re talking Niu-Huang, aka “yellow thing of cattle,” aka gallstones.  Some cultures, particularly in Asia, prize this bi-product of the meat industry as an “antipyretic”or substance that reduces fever (aspirin, ibuprofen etc) as well as antidote in folk remedies. I might be tempted to pop a few as a cure for melanoma – I mean why not right – if it wasn’t suspected that I already have a few of my own.

Gallstones are deposits in the gallbladder, a small organ that stores bile, which is a digestive fluid made in the liver. They consist of cholesterol, salt, or bilirubin (discarded red blood cells).  Tomorrow, despite threatening to go the ER by the end of the week, I have another endoscopy appointment or probe of my stomach and small intestine.  The doctors want to do this before ordering a more detailed study of the gallbladder.  Either way they are leaning towards gallstones as a likely culprit for the pain and discomfort of the last few years.

All I know is I feel like I gulped down a few choice cactus trees, whole. But I am glad that things are at least changing at this point and feel like we may be on the right track.  Prayers answered.

Just know that if it does turn out to be gallstones, you can have my “yellow things” if you want for free, at no charge.  Who knows they might even make a nice pair of earrings or a beaded necklace, with the center piece being a small sac-shaped organ /gallbladder, which they usually take out as well.  Sounds lovely don’t you think?

Stay tuned and thanks, btw, for your continued support and well wishes.

xoxo

Leland

Gutteral

Well, I’m truly at my whit’s end with these abdominal issues.  I’m not a big fan of whining and complaining publicly, but wanted to let my friends and family know what was going on, in case I’m silent here for awhile. If I am silent for awhile it will be because I have either checked into the loony bin or gone on a sit-in at the hospital entrance with a sign on my chest.  Will consider the old school clyon costume if it will help.sign
Basically, the abdominal pain continues to beat the ever living crap out of me.  It doesn’t really seem to matter what I eat or when, but if I do then I might as well have boa constricted a hot iron. There is no current explanation for this despite a litany of endoscopes, a colonoscopy, ct/pet scans, blood tests, ultrasounds, x-ray procedures, tummy tucks, extreme makeovers, calf implants and Botox overdoses (are you really supposed to inject into your butt I am so confused!)…pain still parked here even with synthetically shins, shrunken waist line and expanding gluts.

Solution of late is fasting.  I did a water fast for 36 hours starting last Thursday and have subsequently been juicing since…would seriously consider murderizing somebody for a few pain-free Frito’s Scoops out of the pantry. But that’s not happening. The cost of eating has become too steep to pay.  The fasting has helped some, there have been fewer really rough episodes, yet they remain.  

From what little I know, fasting is often recommended for people with pancreatitis as a way to rest the pancreas and gallbladder.  Fasting in this sense is more like “slowing” because it gives the organs a chance to rest.  Thing is, as with the other tests run, my blood work is not immediately “presenting” as pancreatitis.  Lipase and amylase are on the low end of normal.  Pancreatitis typically causes those to be above the end high end of normal.  Gallstones, which I may also have, might be exacerbated by fasting because the bile in liver and gallbladder might get thicker as a result. So the long and short of it is, I don’t have a damn clue what I’m doing.  Have a saying in a program I’ve been attending for a long time that we should never get too “Hungry, Angry, Lonely or Tired (HALT).”  I’m batting 750.

And I’m frustrated, okay ANGRY, with medical care.  Waiting 2 hours in the doctor’s office for 5-10 minutes of somebody to refer me to another specialist is finger licken redonkeylous. I could also contact other alternative medical professions and, while they will likely give an hour or two of consultation, insurance is not paying that bill.  Sometimes it seems like you have to wind up screaming in agony in the ER before the proper attention is paid. Grrr. Argh. Growl.

The plan at the moment is to continue juicing and then, potentially, do a liver and gallbladder flush.  There’s a lot of mixed debates on the internet as to whether or not this is true quackery or truly useful.  Seems like I’m always crashing against this sort of parliamentary debate. Whatever, if nothing gets better by doing the above Sarah and I discussed checking me into the hospital at the end of the week.  

I know its time to ask myself what I can be doing differently. I’m not talking physically.  Though that’s definitely been the obsession.  Its hard not to think about anything but physical.  But what am I doing with my mental, emotional and spiritual state? From my experience seems like nothing changes physically unless I’m willing to look at those things.  Weird, paradoxical and, frankly beyond annoying as hell, but at least considering…  Grr. Argh. Growl.  

MRI Confirms Sightings!

Just in case you live in a cave and missed the news feeds yesterday, Tumblr and Twitter blowing up, Facebook buzz, or the nationally broadcast public service announcements regarding my recent MRI…

I am pleased to report that after months of conflicting information, rumor mills going bananas, and scandalous-bordering-on-dangerous innuendo, the neurology team at the University of Colorado announced definitively that, indeed, I have a brain. Ha!  Take that you army of sayers of nay and Knights that Say Ni. Score one for the good guys.

This does mean unfortunately – and I’ m so sorry Scarecrow – that I’m gonna have to find another song to sing at work.

scarecrow

In related news, doctors reported this week’s MRI demonstrated stability.  That means no new new cancer and no growth in existing tumors. Meanwhile the radiology team at Memorial Hospital in Colorado Springs reported that the PET/CT scan of my neck, chest and pelvis demonstrated ‘stable to improved.’ This is all good news.  We like good news.  You know good news is good.

Now we have to figure out what is causing the mysterious, seemingly never ending abdominal pain that has been plaguing me for the last few years and has gotten acutely worse of late. Gallstones, pancreatitis, food allergies, stowaway killer bunnies with really sharp teeth or, who knows? Nobody seems to know. On a more positive note, the office of the newly referred specialist will be able to see me sometime in late December, earliest.  Good thing its not indescribably painful.  Phew.

Anyways, THANK YOU to all of you for your continued support, prayers and words of encouragement!  We appreciate it.

…all right Scarecrow buddy, one more time, from the top, for posterity.

‘I could while away the hours, conferrin’ with the flowers
Consultin’ with the rain.
And my head I’d be scratchin’ while my thoughts were busy hatchin’
If I only had a brain.
I’d unravel every riddle for any individ’le,
In trouble or in pain.

Oh, I could tell you why The ocean’s near the shore.
I could think of things I never thunk before.
And then I’d sit, and think some more.
I would not be just a nothin’ my head all full of stuffin’
My heart all full of pain.
I would dance and be merry, life would be a ding-a-derry,
If I only had a brain.’

The 13 Doughnuts

pacino doughnutsIts one of the fundamental laws of the universe that if you want to get 100% attendance at a meeting (especially one of mine), you bring doughnuts.  Doesn’t matter if you snagged a couple dozen from the bargain bin with an “Sell by date from 1902” as long as the glaze glistens and the fat is fried, “If you bring them, they will come.”  So I figured why not use this same gimmick to introduce the subject of this blog?

This definitely wasn’t necessary though as Amy Morin’s “13 Things Mentally Strong People Don’t Do” needs no cheap parlor tricks by way of introduction.  Sorry by the way, if you got excited about the promise of “13 Doughnuts,” but I’m actually gonna talk “The 13 Do Nots.”  These particular fat pills are far more nutritious and don’t include a trip to hypoglycemia ten minutes after consuming (and as a result near total loss of productivity for the attendees of the all-too-important meeting).

Amy’s list hit my inbox in 2013, at just the right moment.  It was @ the time I’d just been told that I actually had 98 brain tumors, instead of what was originally believed to be 44.  That was difficult news to digest. I had just finished nine months and 4-5 rounds of gamma knife and things had been reported as stable to that point.  To hear about this new number 98 seemed insanely-ridiculously-cosmically-ludicrous.  44 had been gonzo enough.  But 98 brain tumors!  That didn’t compute.  It was like we were talking about funny money, “sure I’ll buy Park Place for a million dollars you bet Doc.” And the thought of having to deal with another 4-5 rounds of radiotherapy and more fear, uncertainty and doubt (aka F.U.D.) was unpleasant. I was reeling.  We all were.

The news got me thinking more about the kinds of things I wanted my two boys to know.  For one, what could I pass or hold out to them as important if I weren’t here to tell them myself? My hope was that the experience of losing their dad would not crush them permanently. Instead it would be, I hoped, something that would only serve to make them stronger men in the long run.

Its not that there weren’t solid examples, leaders and messages all around us. We are/were fortunate to have our church, family, friends, and even hockey organization that, I believe, serve to continually reinforce good messages in a variety of different ways, through a variety of means.  But what’s that rule in marketing…you have to say the same message 7 different times in 7 different ways before anyone hears you?

I hoped the boys might be able to cultivate, out of a tragedy, the kind of mental toughness Amy talked about in a unique and succinct way. Even if they did not completely understand, at least they would be exposed to the words and concepts and could perhaps return or recall them later if needed.  Two copies of the list were promptly printed and tacked to their respective doors.  This meant of-course that not only were my boys passing by these messages on a daily basis, but so was I.  For someone who needs continual, arguably remedial reminders about what and how I should be trying to deal with and live with life and more recently cancer, that was bonus material.

As time went by and boys got older, the rooms changed.  The lists were eventually replaced by “Do not enter.  Hockey Players Only,” caped crusaders, Pokemon stickers and fingerprints (apparently “door”, along with “sleeve”, “bare forearm”, “white shirt collar” and “upholstery”, is a synonym for “napkin” in boy parlance).  Yet, here we are a couple years later and thankfully we (as in the Royal sense/me) are still topside.

Recently I was reminded of the list when Connor came dragging himself off the ice after his first two hockey games of the season. He had a great tryout but seemed to whither a bit when faced with strangers from a strange land (Denver).  As we were talking about it, it made me think of the 13 Donuts, pardon me, Do Nots again.

So here they are.  I inserted some comments in italics below related to the more recent conversations I had with the boys on the subject.  I think all of it is relevant for the attitudes we should strive to cultivate whether dealing with hockey games, messy fingerprints, or life threatening illness.

1. They Don’t Waste Time Feeling Sorry for Themselves

Mentally strong people don’t sit around feeling sorry about their circumstances or how others have treated them. Instead, they take responsibility for their role in life and understand that life isn’t always easy or fair.

Dad /Connor/Derek Conversation (DCDC): Its not that we don’t find ourselves feeling sorry for ourselves, ever.  You can’t stop yourself from doing that.  It’s that when you recognize the dark cumulonimbus cloud overhead, you don’t waste time sitting under or in it anymore.  Another way of saying this is that I may not be responsible for the thoughts that come into my head; but I am responsible for what I choose to do with them.  So if you discover you are feeling sorry for yourself, find something more productive to think about and/or do.

2. They Don’t Give Away Their Power

They don’t allow others to control them, and they don’t give someone else power over them. They don’t say things like, “My boss makes me feel bad,” because they understand that they are in control over their own emotions and they have a choice in how they respond.

DCDC: It would seem ideal or the state of perfection would be to practice this perfectly, “sticks and stones” and all that.  Although I think there is a qualification in order here. I have known brilliant engineers and other crazy folk that were borderline Asperger’s Syndrome; who, to a fault, seemed impervious to the opinions and words of others. We talked about importance of hearing what others have to say; but at the end of the day, using discernment about what parts you choose to believe and make your own.

3. They Don’t Shy Away from Change

Mentally strong people don’t try to avoid change. Instead, they welcome positive change and are willing to be flexible. They understand that change is inevitable and believe in their abilities to adapt.

4. They Don’t Waste Energy on Things They Can’t Control

You won’t hear a mentally strong person complaining over lost luggage or traffic jams. Instead, they focus on what they can control in their lives. They recognize that sometimes, the only thing they can control is their attitude.

DCDC: Easy one.  If other team scores, if something happens out of your control, decide what kind of attitude you will have, how you will respond, keep working hard, head down or rather, in the case of hockey, head up and eyes on the puck.

5. They Don’t Worry About Pleasing Everyone

Mentally strong people recognize that they don’t need to please everyone all the time. They’re not afraid to say no or speak up when necessary. They strive to be kind and fair, but can handle other people being upset if they didn’t make them happy.

DCDC:  Really hard for the oldest son, perhaps too easy the younger one.  People pleasing is embedded I think in the first vs second child genetic code.

6. They Don’t Fear Taking Calculated Risks

They don’t take reckless or foolish risks, but don’t mind taking calculated risks. Mentally strong people spend time weighing the risks and benefits before making a big decision, and they’re fully informed of the potential downsides before they take action.

DCDC:  Hockey, especially the pros, has gone bonkers over stats.  I don’t know but there may be a stat for jumping up into a play aggressively vs. skating backwards and letting the play come to you.  How many times does this kind of risk lead to a goal by the opposition vs. a goal for your team?  Nevertheless, the key is discernment.   The way, we discussed, you get to discernment however is by making mistakes and learning from them. The ultimate mistake is never making one.

7. They Don’t Dwell on the Past

Mentally strong people don’t waste time dwelling on the past and wishing things could be different. They acknowledge their past and can say what they’ve learned from it. However, they don’t constantly relive bad experiences or fantasize about the glory days. Instead, they live for the present and plan for the future.

8. They Don’t Make the Same Mistakes Over and Over

They accept responsibility for their behavior and learn from their past mistakes. As a result, they don’t keep repeating those mistakes over and over. Instead, they move on and make better decisions in the future.

DCDC: definition of insanity…doing the same thing over and over and expecting different results.

9. They Don’t Resent Other People’s Success

Mentally strong people can appreciate and celebrate other people’s success in life. They don’t grow jealous or feel cheated when others surpass them. Instead, they recognize that success comes with hard work, and they are willing to work hard for their own chance at success.

DCDC: one good way to do this is to congratulate and do something for the kid down the bench team scoring all the goals.  Act like you are not jealous but happy for them and eventually you will be.

10. They Don’t Give Up After the First Failure

They don’t view failure as a reason to give up. Instead, they use failure as an opportunity to grow and improve. They are willing to keep trying until they get it right.

DCDC: Again hard for perfectionist Number #1 son.  The measure of success or failure is not getting knocked down, as someone used to tell me, but how quickly you jump back up.

11. They Don’t Fear Alone Time

Mentally strong people can tolerate being alone and they don’t fear silence. They aren’t afraid to be alone with their thoughts and they can use downtime to be productive. They enjoy their own company and aren’t dependent on others for companionship and entertainment all the time but instead can be happy alone.

DCDC: Here my boys look at me with blank stares.  Huh?  But Dad, you’re home.  As a dyed in the wool introvert I have been simultaneously grateful and resentful about that for 10 years.  Is that wrong? 0-;

12. They Don’t Feel the World Owes Them Anything

They don’t feel entitled to things in life. They weren’t born with a mentality that others would take care of them or that the world must give them something. Instead, they look for opportunities based on their own merits.

DCDC: We talked about the slippery slopes of victimization. Victims have a tendency of remaining victims long after the crime occurs.

13. They Don’t Expect Immediate Results

Whether they are working on improving their health or getting a new business off the ground, mentally strong people don’t expect immediate results. Instead, they apply their skills and time to the best of their ability and understand that real change takes time.

…We added a couple more Do Nots just for fun.

14. They don’t worry about whether they are not mentally strong yet. 

Kind of like whenever I think I’m being humble, I’m no longer humble.  “I mean gosh Leland you are such a humble guy!”  Wow!  Not-so-much.  If you think you are mentally strong, that’s great, but be prepared for the next challenge life has in store for you.  You might find there is room for improvement.  My recent butt whipping and heavy whining at the hands of treatment related ulcers and gallstones is a great example of this. Better not to spend an inordinate amount of time either praising or pounding yourself over the question of mental fortitude and, as the commercial says, “Just Do It.”  

15. They don’t forget to teach these principles to others

By teaching and modeling these principles to classmates or teammates there is no better way to improve your own understanding.  Makes you realize where you can improve while reinforcing the things you should or are already doing on the way path to mental fortitude.

Finally, at least from my experience, I felt obligated to throw in a spiritual angle here.  What I found is that in order to even come close to approximating a life described above I had to find and involve a power greater than myself.  We talked about how strength can come from failure and admission of weakness. There are probably lots of people that don’t feel the need for this, but in my case discovering that “on my own I am nothing, the Father does the works” was the key that unlocked the door to living the kinds of principles espoused by the 13 Do Nots.

PS. It would be blatant plagiarism to reproduce and talk about 13 Don’ts, if Amy Morin had not been gratuitous enough to let me republish here.  Thanks again Amy!

BTW you can pick up her book on Amazon, 13 Things Mentally Strong People Don’t Do: Take Back Your Power, Embrace Change, Face Your Fears, and Train Your Brain for Happiness and Success

Happy Birthday Mom!

Mom –

You gave up and put up with a lot to raise your children.  Thank you for being the staunchest supporter from day 1, for your constant encouragement, sacrifices and smiles.You are a model of perseverance, good humor, and faith.Thanks for everything and Happy Birthday!

cathy fay

Love you forever,

Leland

PS. Its one of the mysteries of the universe that somehow I find myself 44 and yet you remain to this day, 35.  Alas, sometimes, ours is not ask why.

PSS.  If you are reading this Happy B-D message to my Mom and are in need of the best, most experienced and nicest Real Estate agent in Chicago please contact this lady, Cathy Gibson Fay, at Baird and Warner,  Cathy @ B & W, 312.617.6207.

PSSS.  If you are an eligible bachelor in the Chicago area and at least 35 (younger would be too scandalous) let me tell you how this is gonna work Worm: after you sign the waiver and agree to participate in a series of background checks, blood and hair samples, and rigorous sessions involving a dark room, single bright light bulb, and pack of cigarettes you may possibly be allowed to go on a date with my Mom, if approved and not completely broken by the interview process (we will reassess this with further psychiatric interviews and testing).  After which I really don’t want details. Unless there are issues.  Then you may expect a prompt visit by a baseball bat or large caliber bullet upside yo head, or both, in that order.

PSSSS.  Mom, one of your grandson’s prepared this startlingly realistic picture of your middle child (me), his Father, for your birthday.  Apparently I’m a ‘Weird Dad, Poop Dad, Fat Dad and Chubby Dad.’  Gosh durnit that kid Derek is not only a savant artist but as observant and astute as a whip!  He even got my super sharp teeth right.  XOXO

derek picture

 

Me Medicine

No, I am not regressing to cave man, going all Tarzan, or trying a new paleo diet for English language.  If only things were this simple:

Me medicine.  Me medicine good.  Me want cure medicine Jane now.  

Some might say that “neanderthal speak” or the like would be a definite upgrade for 98braintumors.com.  I’ll grok on that later…

In the meantime, the more popular terminology for “Me Medicine” is “Pharmacogenomics” or the more palatable sounding “Precision” or “Personalized Medicine,” or PM. It’s something I’m enthusiastic about, at least from a user perspective. In my opinion PM is the future of cancer therapy as long as we don’t screw it up too badly.

Imagine you have recently been diagnosed with cancer.  You’re freaked.  You’ve done a bit of research on the internet, just enough to freak you out more.    The “fight or flight” response kicks into full gear. In a lot of ways you are reduced to a primal, ‘Me Medicine Now Jane’ state.  You’re thinking is on par with ‘Ug’ the caveman and you wonder how long until he clubs you over the head and you melt into a simpering puddle of shivering goo.  What about your wife and kids?  Is it gonna hurt?  How long do you have? Wait, does your stomach hurt?  Your elbow?  What is that in your foot?  Have you felt that feeling in your big toe before?   

In walks the oncologist.  You soon start wondering if he’s framed in an angelic white light or if its just the long coat.  That’s because he tells you how extremely lucky you are, that five or ten years ago, he would not have known the exact chemotherapy or immunotherapy, along with the right supporting medicines, to “cure” your cancer.  Sure it might hurt a tad when they stick the needle in your arm once a week (poor baby) but man, you are home free.  You suddenly find yourself in a world restored to “ah yes” instead of “oh, sh, um, shoot.”  

Needless to say, this was NOT my experience.  During my visit to the doctor’s office we started with statistics, jumped into disease processes, talked staging info for malignant melanoma, and I honestly can’t remember what the heck happened next.  I recall the medical “nerdery” was vaguely interesting in a nice and sterile/non emotional kind of way.  But it was by no means the central goal of the conversation as far as I was concerned.

Soon the doctor started pinning treatment options on the statistics- radiation, chemo, surgery, wait and see, clinical trials, immunotherapy, targeted therapy. These things were prioritized and, probably because of my cave man status, moved through my ears in dizzying and confusing sequence.  Each course had its positives, negatives and associated risks. Some were more provocative than others.  But none were a slam dunk solution. I realized that the doctor was not going to tell me what to do.  As much as my paltry research had indicated this would happen, I was still clinging to a #2 pencil sized glimmer of hope that he’d have magic bullets loaded in his anti-cancer Gatling gun.  

But wait Doc, so you are telling me that the medicine you are recommending can cause life threatening colitis, hepatitis, dermatitis even toxic epidermal necrolysis, neuropathy, endocrinopathy, and anal-leakage-itis (I added that last one, seems like every rapidly-spoken-disclaimer-on-TV-talks-about-anal-leakage-itis-don’t- you-think?) and, yet, it has a 15-20% response rate.  In other words, I might get the privilege of a couple weeks of pure insomnia, fevers, and hives only to find out that the stuff didn’t work and/or my immune system was completely trashed and now cancer could have his/her proverbial way with me?  In fact there is a darn good chance (as in a 8 out of 10 person chance) that the stuff ain’t gonna work?  Sphincter says what? And this makes sense why?

You know this wasn’t the doctor’s fault.  It’s indicative of the state of the fight against cancer.  The answers are not yet clear.  There is no small box equivalent inoculation. You can’t knock out a tumor with a mouth full or a month full of antibiotics and bed rest (dammit).  “It is what it is” and “ain’t what it ain’t.”

But what about, “what shall or could be?”

In the software industry we have a process called “test driven development.”  Rather than writing code first, the developer begins by writing the test case (usually automated) which is, at least initially, doomed to failure.  But by doing so he/she essentially creates the success criteria for what shall or could be; then writes the code to pass the test. In this sense when you fail you pass.  What if there was a similar methodology, “Test Driven Oncology,” that could applied to cancer treatment? Test and “fail” first, then code the prescription, based on the definition of success criteria.

I’ve read somewhere that there are over 1300 different genetic tests on the medical horizon (for cancer and other diseases).  Many of these tests- even ones for a full genomic profiling- will be south of $500 dollars (which is BTW, @ 25% less than one of my quarterly scans).  There are also companies and clinical trials offering molecular profiling and tumor testing.  And companies offering to grow your cancer in surrogate mice (mouse avatars), such that a barrage of drugs can be tested against it, before testing it on you, Mr. Guinea Pig.

I got real close to doing that last one.  Had the initial interview.  Talked logistics.  At the end of the day, I did not want to talk about the money.  Thank God I had other options.  However, it remains in the category of “last ditch efforts” if I need it.

So what is the point of telling you about all this?  Its to provide an outlet by which this data can be shared. I think its important information that people need to know. Personalized medicine is potentially a far more effective medical practice.  It is out there and it is growing.  Perhaps most importantly, it’s possible that the potential could be realized for you right now. If you have cancer and can afford it, there may be a better way to understand and treat your disease as of yesterday, tomorrow, next week – things are moving that fast around these here parts.  If you are taking care of someone with cancer, ditto.  Google “precision medicine” or “personalized medicine” + “<insert your cancer type here>.”

If you are running a hospital or are an insurance provider, PM holds cosmic possibilities. I think I read that the average cancer patient costs @ $1M.  Just think if you could prescribe a test for $500 which led to a prescription of a $100K medicine and the story stopped there; instead of paying thousands of dollars in scans, followed by successive series of $100K treatments, hospital visits, oncologist visits, specialists and surgeries and hospice as your patients tumble down to the bitter end.  Stopping with the one test and the one treatment is not only good for the patients and their families but the bottom line. And what a new, more powerful bottom line that could be!  It is the stuff of which Vice Presidents and CEOs are made.

The pharmaceutical companies are already hip to the potential cost savings.  Customizing trials to specific genetic defects or vulnerabilities promises to save them years and take big $$$ off the average billion dollar (yes Dr. Evil, that’s “$1 Billion dollars”) price tag of bringing a new medicine to market. In turn, many of the therapies emerging might not cure but instead transform an illness to a “chronic” vs fatal one.  Imagine the residual income that could create over the lifetime of a patient population.  There are of-course social, political and regulatory hurdles that pharmacogenomics must first jump past.

Finally, if you are thinking about voting in the next weeks, months and years to come, I don’t know what to tell you; nor will I!  www.98braintumors.com is not about that, nor will it ever be as long as I’m writing here (and last time I checked, I’m the only one writing here).  This site is about sharing my experience, strength and hope to try to help somebody. That said, what I think we should each consider and decide, in light of our own conscience and reasoning abilities, is whether “personalized” and “socialized” belong in the same sentence. I don’t know the answer nor, as I said, am I going to pull the pin on an opinion and toss one out here.  If the concepts can play together nicely, great.  If they don’t let’s deal with it.  Either way, let’s try not to act like cave men when discussing ‘Me Medicine.’

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