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.’

caveman 1cave man 3cave man 2

 

Sunday controversial

Jesus-loves-hockey

Well, could be worse.

The athletes in the picture could be under investigation for use of previously undetectable anabolic steroid; the touchdown could have occurred after a blown off sides by a ref with a drinking problem the league has been improperly ignoring; the hockey game could be played during an unseasonably warm day at the Arctic Circle; the two hockey players depicted could be”in a relationship,” and, btw, second cousins; Jesus could be watching the game on his iPhone instead of Android, made in a sweat shop in Arkansas, staffed by illegal immigrants from Patagonia, owned entirely by a foreign subsidiary, and the parts made from the ground up incisors of northern endangered buck-toothed weevils.

We are off to church and then our fourth hockey game/practice of the weekend.  I’m sure Jesus will be watching this as well as Sunday football (American), and the Cubs win tonight.  Though I’m sure, despite being hard to believe from my perspective, there are equally compelling reasons to root for the Mets.  Guess will just have to trust in the hand of providence that everything will work out, regardless of potential outcomes. Thy will be done.

Diagnosed with cancer?

The following is recycled from an email I sent to a good friend of mine.  Its talking about possible suggestions of what to do if you or someone you love gets diagnosed with cancer. This by no means should be considered authoritative advise (if you need a refresher on my level of authority please visit the 98braintumor’s Disclaimer).

“At the end of the day” I believe each person should consult their doctors, medical professionals, friends and family and ultimately their own conscience, reason, faith and intuition.  Here are some ideas based on my experience with doing something like that and I hope it might be of use to you.

Take responsibility for your own health, even to the point of being a jerk 0-;. I found that there are doctors with big brains but little emotional intelligence.   A pet peeve is when they are afraid to admit they don’t have the answers, are completely obtuse about the emotional weight of information they are providing, or lack any real troubleshooting ability.  I’ve said to doctors before, “I’m okay with you taking a guess on what we should do.  Even a best guess would be okay.”  This speaks to my own experience in software engineering where there have been a few times, in dealing with a complex problem, someone had a hunch, couldn’t necessarily explain it all, but we arrived at a solution nevertheless by “stepping off the ledge” and just trying something on faith.  It was only after the fact that we understood the entire problem and solution space.

Its true as well, and perhaps a cliche, medical schools don’t appear to teach or have time for people skills. This is aggravated by a system which encourages a kind of fast food (Order Up!) mentality in which each patient must only get the allotted 5 min/32 sec/99 ms per visit in order for the doctor to pay his or her mortgage, staff and medical insurance.  Also, if you don’t like a doctor then find another one.  If you only get 5 minutes it might as well be a good 5. They are not gods, not even lesser ones even if their suits are hand tailored on Savile Row.  Second and even third opinions are good too.

I found a few studies on ncbi.com that talk about how survival rates were better for cancer patients who had bad relationships with their doctors.  From my experience this is because they don’t roll over and trust everything that their doctors say; they take initiative, ask the tough questions, don’t take “no” for an answer in some cases, and are in some ways are “a pain in the arse.”  Maybe even demanding of 6 min/44 sec/57 ms or something crazy and outlandish like that.  If you are not feeling well enough to be a thorn, or if that is not as Austin Power’s would say “your bag man,” get that friend or family member with a bull dog mentality to go with you.  Have them take notes too.

BTW ncbi is a good reference for published medical journals on different substances and their efficacy against cancers (both specific and non-specific). http://www.ncbi.nlm.nih.gov.  I’ve used it several times as a reference as well as to remind myself why I wasn’t a huge fan of Latin in high school.  You can also look at potential clinical trials and discuss these with the doctors.  Find trials at https://clinicaltrials.gov/

In general, stick with the big cities and big institutions if you have a life threatening condition.  Also try to find the specialists for a given illness.  There are many different types of cancer and, within each type, lots of variation.  The errant cells that constitute my particular version of melanoma, for instance, are not the same as Susan, Jeff’s, or anyone else.  The big cities and institutions (again I’m generalizing) attract the best doctors.  As a rule you will get the best care in these locations and, as indicated, when you seek out the ones focused solely on your disease.

Omid Hamid at The Angeles Clinic, my favorite all time doctor (no offense to anyone else, many of you have been da bomb), probably sees a couple hundred patients with melanoma per year.  A local, less specialized oncologist, might only see 1 or 2 people diagnosed with melanoma in an entire year.  So, think about it, would you rather have the guy who specializes in Ferrari’s at the Ferrari dealer fix your red F12berlinetta or would Earl at Roadkill’s Body Shop and Repair be better?  You may have to work for these relationships if you do not live by the big cities or if the expertise is in a different state or even country, but its worth it.  Finding the best can have dramatic differences in overall outcomes.

In that sense, I think about doctors the same way I think about software engineers (or any engineers).  Not all are created equal. I know this “anecdotally” (yeah that just happened I made up another word) from experience in industry.     The good SWEs can accomplish 5 or 10x more in 8 hours than the not-so-good-ones in 40 + Mountain Dew + doughnuts + overtime. There are lots of published statistics describing this condition as well.  IMO it’s the same with doctors.  You want the knowledgeable and learned, the trouble shooters and communicators with helpful attitudes and a passion for what they do.  Nerds rule by the way.

This includes investigating and seeking out alternative forms of medicine.  Controversial at best and again in the category of my own opinion, but I believe that there is more than one path towards healing and finding answers. I believe this not just because I’m like into groovy and spiritual stuff and like because I have spent thousands of hours simultaneously rotting and expanding my brain listening to the Grateful Dead. A trip around the internet suggests that there are lots of people out there offering different viewpoints and experiences.  Undoubtedly there are snake oil salesmen out there, pseudo science, crackpots etc.  But, there is also a whole world of people sharing their personal experiences. I think its equally “bad science” to summarily decide that all of it is no good because it doesn’t have a clinical trial and million dollar research grant associated with it. I think the scientific method and FDA are there for a reason and have brought tremendous good to the world.  But it isn’t everything IMO.  Nor is necessarily running off to central america to have your blood drained while hanging upside by your toenails, drinking a vegetable smoothie and listening to Bob Marley the Alpha and Omega either.  Again, controversy abides.  Thank God we are entitled to own opinions, for now.

Find the knowledgeable care-givers and/or patients that are running advocacy programs. Find out if there are online support groups or organizations interested in your specific cancer and ask them the questions…”is this treatment effective” or “is this doctor good?” “how do I deal with this side effect?” etc. I believe finding someone like this for me, in the case of melanoma, was one of the key factors that kept me alive in the beginning. I was able to make a much more informed decision when armed with the right information from someone who had been fighting the battle longer than me.  The real rub with all that though was that she was introduced to me by my Mom; thus proving Mom’s are always right. Dangit!

Don’t underestimate the power of nutrition and the role of the immune system in fighting cancer.  This is another controversial topic with the power to exercise my inbox.  Especially for lots of med professionals who think it’s a bunch of mumbo jumbo.  But if you step back and think about sayings like “garbage in garbage out” or just simply apply common sense, then the answers get clearer (for me anyways).  At the end of the day I turned to better nutrition because I was desperate and had nothing else to lose so perhaps its not really fair for me to offer my opinion on this subject.  Either way, it is a personal choice.  I decided that I might as well go out, if I was going to go, swinging as hard as I could for left field, turning over every rock and trying anything I could in the process.  There is lots of evidence that diet plays a role in cancer.  Three of the places in the world where cancer rates are as low as 1/3 the rate of US (Greece, Japan, and a community in California (I’m thinking Mormons)) have demonstrable high vegetable/low protein diets.

I am going on 5 years without any processed sugars or meat.  I did this after research that suggested sugar is one of cancer’s favorite meals because of its high metabolic rate as well as twisted processes.  I decided I was not going to give it an easy meal, ever.  I forego meat/sugar as part of the budwig diet (can also google).  Another controversial subject and not that easy to implement.  But, I was very encouraged by the hundreds of online testimonials that I read of people who did it and got well.

In my own experience I also saw dramatic results using this while doing immunotherapy (new kind of chemo with different emphasis than traditional therapies)…was doing blood work every week as part of clinical trial.  Within 1 week of starting the budwig diet my dangerous liver and kidney counts all returned to normal.  It was dramatic enough that the doctor asked me if I had still been doing treatment.

There are natural supplements that have been shown to fight cancer.  Some have even gone head to head with chemo therapies.  One that I use every day is turmeric with black pepper (I have @ 2 tablespoons a day with a touch of black pepper which helps increase its effects, prepared as a tea).  Turmeric contains curcumin which is the substance in curry, used heavily in Indian food (another place in world with low rates of cancer).

Confront the possibility of dying and deal with whatever needs dealing with now.  This was and is one of the hardest things for me to have to face.  But the link between emotions/well being and the immune system is also documented.  Connect with church and mental health professionals to work through any issues or problems.  As somebody said once “there are no real atheists in fox holes.”  Either way, I have found great comfort in exploring the subject of death and afterlife.  It’s amazing, when it happens, to realize how short life can really be and to stare down death.  Drove me whacky for awhile.  Again church helped.  The fellowship I attend helped.

Praying, reading and examining the subject of death helped as well.  I got a lot out of sites like IANDS site on near death experiences (read every single one as part of morning reading) as well as books like Eben Alexander’s Proof of Heaven.  Elizabeth Kubler Ross who wrote “On Death and Dying” also wrote On Life After Death, having researched something like 20k different near death experiences.  For me, just as with reading about people’s personal experiences with alternative medicine, these kinds of life experiences, where people are sharing their own thoughts and perceptions, were extremely helpful.  It wraps some skin around the theory and/or faith and belief.

Remember that statistics are not everything.  They can be a strong marker or indicator for various diagnosis, treatments etc but are not the end all be all.  There are so many complex factors that come into the treatment of a human condition (person’s age, relative health, diet, mental attitude etc).   So if you hear some dismal stats just remember that one size does not fit all.  In turn, you have to be careful what you choose to focus on.  Studies have also shown that the stats can be self-fulfilling prophecy…eg tell someone that they are going to live a month and they might just oblige and die exactly 30 days from now.  This underscores the need for mental toughness as well as support systems.  People that talk about their health with others formally or informally are also statistically shown to have a higher survival rate.

Don’t give up no matter what.  Another cliché but absolutely true.  I’ve had 98 brain tumors and am still alive three years later, after one grim diagnoses after another.  I’m not bragging (I hope) but have had cancer in brain, stomach, lungs, liver skin.  I’m still here though maybe not “all there.” I can’t blame cancer for that “not all there part”…goes in the category of pre-existing conditions.

Again, all of the above is based on my opinions and perceptions of what worked and didn’t work.  Its not comprehensive.  I forgot, for instance, to talk about how I like to smother myself in organic garlic butter and slither up trees in the backyard to watch the sunrise each morning while chanting the chandi path durge and whipping myself with a cat of nine tails (do I have to say ‘kidding’ here or did you think for a second that was true?).

Regardless I could be wrong about some things and I could be right others.  If you have cancer and are struggling, believe me I know, that’s maddening to hear.  We desperately want to know and have the answers, the timelines, and the proven results.  Are they there to be found?  Sometimes yes, sometime no.  I believe I’ve found a few ideas that work for me.  Don’t know if they are going to last another year or another ten years or more.  I’m certainly hoping and praying for the latter.

What I do know today, to my very core, is that these three are worth the price of exploration.

derek S&C S&D

Con and Der

 

 

The elephants in the room are under my skin

Since being diagnosed with Stage IV Melanoma in 2012 more than a few, well-meaning friends and family have suggested that “it isn’t your fault you got cancer.”

While there is no way to determine with absolute certainty, and I hope I’m open minded enough to consider other possibilities, I believe they are wrong.

Okay, ladies and gentleman, the elephants have entered the room. Let me begin introducing this herd of pachyderms by saying that I believe they are from Asia and not Africa.

One way to tell the difference between Africana & Cyclotis Maximus (African subspecies) and Indicus, Borneenis and Sumatranus (Asian subspecies) is by complexion.  African elephants are typically dark gray or grayish brown while those from Asia are gray, tan, red or even pink.

Anyone that knew me “back in the day” would have seen a variously tan, red or pink complexion (e.g. Asian subspecies), premiering on my skin sometime around my sophomore year of high school.

pink elephant

And some or all of you asked,

“How is that you are able to maintain such a curious, daresay un-natural (not necessarily in a good way) glow when Chicago can go 70+ monotone days with nary a sun’s ray in sight? I mean it’s nearly February what’s up with your red face boy? Opportunities for Christmas vacations in Florida have passed and Spring Break and its attendant sunshine, bottles of baby oil, other bubbly stuff, and potentially bad life choices is still weeks away?”

When the questions arose about my rutabaga complexion I evaded, deflected or ignored, drawing spiritual inspiration from Ollie North and the Iran-Contra congressional hearings,

“Mr. Senator, I have no recollection of the events in question Mr. Senator.”

And not that anyone – least of all my friends – would have whispered behind my back, but I think, if I listen carefully, I can hear faint, thirty year old echoes reverberating out of St. Ignatius College Prep’s hallowed halls…

I-know-I-know- he must be going to the, The, THE TAN…

But you were gracious enough not to call the elephant by name, to my face, and risk shattering the wooly mammoth sized ego.

Please don’t feel bad or take that last statement the wrong way.  That was neither meant to be a slight or accusation. It’s straight fact, at least from where I sit.  I had a nasty, near fatal as it turns out, case of ME and I wouldn’t have listened to you regardless.

Who knows maybe somebody did speak up, I didn’t hear it, and I don’t remember…this would only serve as further evidence of the mastodon sized “impediments to listening” of which I am speaking.

For the record and to the point, the “lobster look” I sported in high school was not due to sunshine; nor was my personalized global warming plan the result of dark-complected ancestry (unless Ireland, England and Scotland are closer to the equator than we think) or some errant and freakish genetic aberration.

I hit the tanning bed man, as you suspected. You know the fat guy with the big nose I have been alluding to here, capable of shining Spring Break up – I mean – through my window all winter long…and I invited him/tanning salons into my life willingly and with near religious zeal!

During spring break of my freshman year, after “suffering” through six months of “serious acne” on my face I discovered the power of The Tan; okay more like The Burn.  A good somewhat painful sizzling was hot enough, I found, to scorch the anchovies right off my face and I thought a pizza-topping-free complexion was note- worthy and admirable. The tanning bed, by extension, became the obvious conclusion next fall.

I mean this was the 80s right.   Billy Crystal’s Fernando Lamas impersonation on Saturday Night Live was supposed to be good comedy, but I took it as gospel, it was truly “better to look good than to feel good.” (BTW you all look marvelous out there, from where I sit tonight).

Here, we parade out the second elephant.

Some equally well-meaning people might say,“Don’t feel bad.  We didn’t really understand the potential dangers of artificial tanning back then.” 

Um, excuse me while I step over the amalgamation of bovine fecal matter (my new favorite phrase).

Whether or not “we knew” as a society, I knew.  I knew in the same way that I knew <fill in your favorite thing a teenager probably shouldn’t be doing> was wrong.  I had many internal dialogs about it in fact.  Something along the lines of and to paraphrase,

You know Leland, this tanning stuff is probably bad for you and you might get cancer.

Right now I’m picturing the responder as an elephant, Babar-like but sinister, sitting on the corner of State and Goethe, black beret tipped sideways on his wide hairless scalp, as he speaks out the side of his gaping mouth over a fistful of smoking cigarettes and wickedly sharpened tusks,

…Yeah but that won’t be until you are really old – like forty or something – and you need to look good now so who cares, we’ll deal with that later, c’mon Leland everybody’s doing it. Moohoohahaha.

Don’t be fooled by this guy.  Don’t think that we didn’t know about skin cancer in the 80s.  This was pre-internet but not pre-stupid.  I don’t know how we knew, but we, I should say, I knew.

“Okay yeah,” the final elephant of this story says, “but lots of people went to tanning beds and fried their epidermal layers in the sun back then.  I mean remember those ridiculous contraptions in the 80s…you know the ones made of silvery space blanket material in order to achieve maximum UV radiation? And what about the gang of leather skinned, alligator ladies who sat by the pool, 12 hours a day/7 days a week at the club? Not all of them wound up with skin cancer.”

These are arguments are silly and akin to wondering why our Nana, God rest her soul, never got lung cancer after seventy years and a trillion Marlboro’s. The reality is people who spend too much time in the sun or doing any other “at risk behaviors” are likely to suffer the consequences, eventually.  My guess is if Nana had smoked 70 more years eventually she would have developed lung cancer.  As a friend of mine used to say, in reference to sobriety and staying out of bars,

“If ya go to a barber shop long enough chances are you are gonna get a haircut.” 

There’s plenty of damning information out there.  Here’s some from the first site that came up while searching on the subject (www.skincancer.org):

  • Sustaining five or more sunburns in youth increases lifetime melanoma risk by 80 percent.
  • The skin of teens is thought to be more vulnerable than adults’. Teens may be especially susceptible to skin cancer because their cells are dividing and changing more rapidly than those of adults. Changes or mutations to the DNA with cells can occur as a result of damaging UAV exposure.
  • Indoor ultraviolet (UV) tanners are 74 percent more likely to develop melanoma than those who have never tanned indoors.
  • Finally, and Nana might be smiling here, studies have shown there are more skin cancer cases due to indoor tanning than lung cancer cases due to smoking (420k cases of skin cancer /year in US; 6K of which are melanoma).

In ‘The Elephant’s Child,’ Kipling retells the folktale about how elephants got their trunks.  A young elephant, bursting with curiosity, asks,

“Excuse me, please can you tell me what the crocodile eats for dinner?”

And to make a short story shorter, the nearby croc tells her,

“Sure, I’ll tell you, come closer.”

An epic tug-a-war ensues, with the lizard pulling on the elephant’s nose, stretching his snoz into a trunk and the rest is, as you can tell, history.

Perhaps this elephant analogy has stretched on long enough as well.  Either way, it’s out there now.

I hit the tanning bed as a teenager. I knew the risks.  I did it anyway.  I caused or at least put myself at risk for cancer and I get to face the full consequences, 98braintumors.com later.

If this serves as cautionary tale for someone, great.  Purpose served.

That being said, and I’ve kind of hinted around this above, I don’t think the “tanning bed” was the real problem.  I will talk about that in the future posts, more than anything because I hope my two boys will read about and understand what I’m saying later.  But for now it’s time to hit the bed- shades down of course.

Oh and in case I’ve given the impression that I’m sitting here wallowing in self-pity about any of the above, I am pasting this disturbing but somehow apropos (tangentially at least) and strangely hilarious picture of Santa catching some rays on the beach. Merry X-mas!

bad santa

Kind of makes you wish the mind had an backspace button that worked, doesn’t it?

Testing 1-2-3

Ran the Palmer Lake Reservoir trail today with E.

Beautiful day, beautiful weather, beautiful CO.

I love this dog, glad I did not take her to the pound as a puppy and she’s chosen not to chew on my throat while sleeping (yet).

oct 10 2015 018oct 10 2015 020

 

 

 

 

 

 

Listened to Papadosio @ Catskill Chill while enjoying perfect fall weather and pain free morning.  Righteousness!

It was great until we got accosted by this troll who crawled out from under his bridge/hovel/stump.Leland Troll

Wanted to know what the hay I was doing at 8000 feet with Stage IV melanoma…told him I was working on my tan man.

As to the true purpose of this particular post, I think I have Facebook and 98braintumors.com integration in place. Can now post directly to FB and comment on posts utilizing FB credentials.  Testing 1-2-3.

Its good to know my skills have not completely atrophied since becoming manager/TPS report pencil pushing guru.  Actually with the tools available there’s minimal coding, even a Lundberg like me can do it.

Gnawing on possibly deeper bones /subjects but not ready for wider consumption. Hopefully later this week.  Gotta run.

oct 10 2015 028

 

No News is No News

For those of you asking how my quarterly trip to CU Denver went, it didn’t.  They called Wednesday morning and cancelled the MRI as we were preparing to go.   Not sure what happened…

Maybe it was because last time they rented the 9.4 Tesla from University of Illinois which failed utterly to produce and the doctors didn’t want to make the same mistake again.

As I recall…

Even though the world’s most powerful MRI machine has a magnetic field three times stronger than regular clinical devices, the team of distinguished neurologists, after a few very tense, hand-wringing hours, threw up their hands and wailed in disgust while spewing their highfalutin and confusing-to-the-lay-person medical jargon,

“Like broheim we have to tell you man, we are most displeased to inform you that we are like incapable of capturing Polaroid-ifiums of your mental chrome-dome-isphere; like your snail gel is most un-copious.  We can’t even find your brain man. Where my dear are you hiding that thing? Such an uncool noodle!  And this MRI mega blows!  We are so totally bummed!”

Or maybe the machine was just flat broken and they had to call AutoZone or the Xerox guy or Doc Brown or whoever to drop ship an array of new flux capacitors and they were back ordered on Amazon and then the drones weren’t “cleared hot” for delivery to south eastern Denver so they had to send Mr.T in the A-Team van to go pick them up but they got stuck on I-25 in traffic or something.  Idiots!  They probably should have taken the toll.  Dunno.

Image result for funny picture of flux capacitor

Either way, I don’t have any news. Have not rescheduled yet but should be in the next few weeks.  As soon as there is something to share we will let you know.

Thank you for your prayers, well wishes and love.

Oh and now for my favorite Back to the Future quote, a la Doc Brown, “If my calculations are correct, when this baby hits eighty-eight miles per hour… you’re gonna see some serious $#!+.”

That said, here’s to hoping that the 9.4 Tesla, or even some skinnier version with 3 times less magnification, sees the same or even improved $#!+ between my noodle-sphere.

Peas be with you in meantime and nanu-nanu and all that and what not and whither for.

Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter

So I was talking – okay whining – at the end of my post yesterday about my desire to write some Top Ten Lists so I could be cool and rightly join the other 2M bloggers on the internet.  Included was the suggestion that I had to wait until ‘everything works out’ or melanoma or ulcers or toe fungus or whatever was completely eradicated to accomplish such airy goals.

It occurred to me this morning  that was pretty lame, fueled by an insipid dose of self-pity, and well, we will just have no more of that today.  I realized too that, in the same breath, I had unknowingly provided a ‘tantalizing’ view at the end of yesterday’s post into the kinds of erudite indexes I might able to bestow upon the world.

Without further ado, the blogroll that all 28 of you who subscribed to www.98braintumors.com (potentially less after this)  have been waiting on the edge of your keyboards for…

Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter

  1. Because we are already married or have girlfriends
  2. Because it relieves the pressure on our huge brains
  3. Because we don’t just talk the rhinotillexomania talk, we walk the walk
  4. Because stop lights are way too long man
  5. Because we would rather pick our own than somebody else’s
  6. Because, let’s face it, you just look more intelligent when picking a winner
  7. Because their could be gold in dem there hills
  8. Because it tastes better than licking off sleeves, under sofas, bottom of elementary school desks or back of church pews

Runner Ups:

Okay that last one is more about snot consumption rather than extraction but I couldn’t resist.

Speaking of which, I openly admit to at least giving the thought of drinking my own urine some possibly intense consideration.  Ah, cancer, what wicked webs you weave!

You will be happy to know, I hope, that I decided against it.  Did not want to risk giving that viscid secretion in my nose, consisting of mucin, epithelial cells, leukocytes, and various inorganic salts, a bad taste.  0-;

Before things get any more third grade-ish (or worse), I’ll stop now and go to bed.  And all the (28ish and falling) people said, “Yeah good idea moron.”

But first I need to take care of something…

picking nose