Size of Folder Matters

In one of the Facebook groups I am a part (Melahomies United) fellow melanoma survivor Kim Reynolds offered the following words of comfort to someone having trouble keeping the faith in her fight against cancer.

“…When I learned that yervoy (a cancer immunotherapy) wasn’t working, I felt like someone deflated my happy balloon. I’d tried to stay so strong and keep that “fighter” attitude … but I was TIRED. I cried in front of my oncologist and was explaining to her that ‘I’m tired’ … I’ve been in this fight for nearly 3 years of constant fighting, and I’m tired. Know what she did? She clapped, smiled, and held my shoulders to let me know that she understood being tired … but she also related that she had been treating melanoma long enough to know that a handful of years ago I wouldn’t have had the opportunity to have been fighting for 3 years. She told me about how her melanoma patient files had always been so thin … because her patients died so quickly. She smiled and said “I know you’re tired, but I’m happy to see that your file is fat because that means you’re still alive.”

Most profound sister!

After nearly four years I can relate to potbellied folders. While the University of Colorado health system is online, there are other doctors’ offices that have not implemented such modern measures. I remember Dr. Hamid’s office in LA, for instance, and the nurses lugging a binder of biblical sized proportions into the room as an army of angry Ents (trees) wailed and scratched their limbs on the windows outside…and that was just the accumulation of a few months of weekly visits. Imagine today how ginormous my folder would be, due to bulky numbers like these:

  • 50 PT/CT Scans
  • 60 flights to different cities for treatment /consultation
  • 10 radiation treatments
  • 12 gamma knife treatments
  • 60 MRIs
  • 70 infusions
  • 3 endoscopies
  • 1 colonoscopy
  • 4 major surgeries
  • 5 biopsies
  • 2 ER visits
  • 100 blood tests
  • 70 trips through Walgreen’s drive prescription windows
  • 60 doctor’s visits

That’s some potential paper.

I can also relate to the seemingly endless, ad nauseam doctors visits, scans, blood tests, phone calls, consultations, surgeries, meds and treatments…as well as getting/being TIRED.

Yet I’m reminded of a trip to Peru in high school in which we toured a hospital in one of the miserable, sprawling slums of northern Lima – a filthy, miserable hell on earth. They had a BYOM (bring your own meds) policy. Families had to first pay a visit to the pharmacy next door, if they could somehow afford the prices, to buy overpriced medicines that doctors would then use to treat patients down dirty, overcrowded corridors. I wonder how much paper someone with cancer got generated there? My guess is very, very little. If anything, the folders were like gossamer, as frail and anemic as hope in that place.

Got to remember I have the luxury of a thick “folder” today. Its filled with the scrawling words, test results, checklists and sticky notes of doctors, office staff, nurses, physicians assistants, and nurse practitioners, insurance folks, lab and radiology technicians…as well as the energies, efforts, prayers, directions, support and well wishes of family (especially my wife Sarah), friends, coworkers, Facebook homies, church members, they-who-will-not-be-named-anonymous members, strangers on the plane, in the elevator, and front desks of the world.

Thanks everybody! I will try to remember that the proverbial binder is no heavy anchor around my neck but a blessing…and to those struggling tonight, keep working on that paper man! Size matters.

PS. We just reached 10,000 visits to www.98brainturmors.com in three months. Adding that to the story.

PSS. Got CT/PET Scans today – stable to improved. Also folder worthy.

PSSS. Going on two weeks without Gluten. Quite awhile ago I “failed” the celiac test (absence of antibodies) so I didn’t think that was a thing. But have not had any major nausea and cramping flair-ups. So it may be a thing indeed. I will share more on this later if it proves out.

Massholes discovered!

Fresh on the heels of my latest post, top secret a-hole recognition software was utilized to scan the internet and, almost instantly, discoveries were made and two true a-holes found.

What is truly amazing is that these two individuals were not just garden variety a-holes.  No, these two individuals were such incredible a-holes that the terms “a-hole” proved too small.

Yes, we have discovered our first true Mass-holes in the universe. Couldn’t be prouder or more frightened at this moment.

alan

Alan H, True Mass-hole

paul g

Paul G, MASS-HOLE Extraordinary

 

 

34.25 Signs You Might be an A-hole

Originally the title of this post was “34.25 Signs You Might Be an A-hole.” I was, quite unselfishly and humbly I might add, going to provide a quick and easy way for people to recognize those a-holes living among us. What a guy! What a noble calling! What a rubric for negotiating modern life! What an…

But then I got to thinking (which is usually not a great idea but in this case it worked out okay)…

What an a-hole. 

I mean how is it that I can lay claim to even a modest degree of proficiency in the subject matter; and so smugly produce a list?

Make no mistake the first sign, as in #1 in the list below, is there for a reason.

So, anyways, I changed the title temporarily of this post to “34.25 Signs I might be an A-hole.”

That seemed a better title for awhile…

But, needless to say, I changed the title back.

I’ll give you 34.25 chances to guess the reason why.

34.25 Signs You Might Be an A-hole

  1. Whenever you are thinking you are not really an a-hole, then you probably are one, so sorry
  2. If you are convinced that somebody else is an a-hole, then its possible you could be one too (also sorry about this)
  3. Whenever you are overly sorry, that’s a perhaps a good indication you are a sorry a-hole
  4. If you are speaking ‘passionately’ and it has suddenly gotten very quiet in the room, you might be tangling with a-hole-ish behavior
  5. When you get done speaking and no one is looking at you, chances are good that you are an a-hole
  6. If somebody just whispered, ‘What a total a-hole’ under their breath, that’s probably not a good sign either
  7. Whenever you feel compelled to prove how much you know or how right your opinion is, then hot-dang, get yourself a ‘I might be an a-hole’ t-shirt son
  8. If you are driven to talk about something you have little or no knowledge about, then you might want to convince yourself you are an a-hole first
  9. If somebody just texted their friends while you are speaking, ‘can you believe this a-hole??? lol’, then the prognosis is likely “un-good” as far as you and the title of a-hole are concerned
  10. If you go to the DMV to get your custom license plates and the clerk says ‘How about ‘A.H.O.L.E’ instead? That could indicate you might want to have A.H.O.L.E. stamped on your forehead
  11. If you just got done calling someone else an a-hole, you might want to check your own nether regions
  12. When education, name, birth place, place of residence, team, employment status or position, relative wealth/poverty, race, political opinions, suffering or success, religious or spiritual opinions make you better or “righter” than some other a-hole, you may be displaying classic a-hole symptoms
  13. When you use words like “truly” or “sincerely”, that could be a bad sign of a possible a-hole outbreak
  14. When you feel like you have been waiting ‘long enough’, you might not have to wait much longer to prove you are an a-hole
  15. When you find yourself judging a-holes for being too judgmental, that’s can be a sure sign of a real a-hole move
  16. Whenever you are 110% correct, you are usually 100% a-hole
  17. If those a-holes are 110% wrong, you are probably not 100% non-a-hole
  18. When you passed a lie detector test, even though you were lying, congratulations! You may have passed the a-hole detection test
  19. If you take another lie detector test in which they ask if you were lying on the first lie detector test, and you pass, you may have just been proven ‘guilty’ a-hole
  20. When you insist on being called a doctor even if you have a PHD and that’s not really the cultural norm, this could be considered pseudo-a-hole-ish behavior
  21. When you feel its your mission to change a cultural norm, however insignificant or popular and/or benign, you might want to check your nether regions
  22. When you just have to say something even if its going to shatter someone else’s feelings/stature/pride/position, just because you know ‘its the right thing to do (for them of-course)’, then you are probably about to be wrong and they will probably be right later when they call you an a-hole
  23. If your wife prints out this list, laminates, and sticks a copy in your wallet, then you are probably, literally a card carrying member of the a-hole fan club
  24. When you discover your laminated, a-hole card in your wallet and ask yourself, ‘Now why did she stick that in here?’ then, ladies and gentleman, the a-hole may have just entered the building
  25. When acting like an a-hole, you pull out this card and can’t find a single thing to relate to, rip the card up and swallow, digestion might be your only chance at uncovering your true a-hole self
  26. If your wife gives you a glass belt buckle for Christmas and says, ‘Here now you can see where you are going,’ you might possibly get accused someday of being an a-hole
  27. When you write a heated email and use lots of these and those and them or even this, this could suggest you are in an a-hole state of mind
  28. If you are wondering if you should send the aforementioned e-mail, you might want to wrap yellow ‘Caution – A-Hole Line – Do Not Cross’ around your work space
  29. If you send it anyway, um, you may have just crossed the border into A-hole-ico-land
  30. When you use too many “you”s in sentence, YOU might be an a-hole
  31. When you use too many “I”s in a sentence, that can be a measure of a-hole-itis
  32. If you use the term ‘a-hole’ instead of asshole in a list like ‘34.25 Signs You Might Be an A-hole’ because you want people to think you never actually use the term asshole cuz like you are too evolved a person to swear anymore, then your a-hole certification has probably not expired
  33. If you can’t think of anything nice to say but you say it anyway, well…c’mon man what would your Mother say man?
  34. If somebody calls you a ‘Mass-hole’ because A-hole is not a big enough term to describe you, then you might-could-possible-be a real a-hole of the real a-hole variety

.25 If you tack on .25 to a “34.25 Signs You Might Be an A-hole” list to try to be “cute” or get attention or who knows why, they might soon be welcoming you to A.A. (A-holes Anonymous) club

Of-course, there is a difference I think between ‘being’ and ‘acting’ like an a-hole. And of-course, anyone that uses ‘of-course’ in a sentence might be accused of a-hole-holic behavior (I can’t stop; this could of-course be #35) someday. But anyways…is that really true? Are being and acting a true distinction? There was a time in my life when I thought intentions mattered. There was later a time in my life when I realized intentions didn’t matter; it was the actions that counted. But now I think its somewhere in between. At least I had those good intentions, like a seed. They were however un-realized, at least, present. Though perhaps the longer intentions went un-realized the bigger the a-hole becomes. Anyways, I have diverged a little here from something somewhat comical and truthful or maybe tragic (all maybe the same?), to a more serious subject.

This means there has to be time for one more…

#36 When you are that guy that takes something relatively fun and light and makes it kind of morbid or self-reflective, that may be a sign you have stepped into yonder a-hole territory.

 

Your Mission Should You Choose to Accept…

I mentioned during my last post that I’m grateful for the advice Susan Steel provided when I was first diagnosed with Stage IV melanoma. As I was running and thinking about this the other day, I realized that the way in which she delivered the information, in hindsight, was also quite exceptional.

For one, Susan never told me what to do. This, as some of my friends and family might surmise, was probably a wise decision. 0-; Instead she gave me a mission which I could either choose to accept or deny; but in either case the phone would self destruct in 5-4-3-2-1.

Image result for top secret briefcase picture

In this manner Susan led me gently in the right direction and taught some lessons which I still use to this day. I thought sharing some of these ideas might be valuable to my fellow melahomies reading here; or to a anyone facing medical spaghetti junctions in the road.

It was all kind of black hat-ish in hindsight. Susan practically whispered about a paper she’d recently obtained from a prestigious and well attended summit of melanoma researchers and oncologists in Chicago, fall of 2012. I admired her pluck – inserting herself in conferences and conversations where only doctors and phd’s feared to tread. She told me how, in many of these meetings, she was the only patient advocate, sometimes wanted and sometimes not.

I imagine her stepping up the microphone amidst a room full of cold shoulders in white jackets.

“And your name is?”

“Steel, Susan Steel,” she’d say and then lay down a heady dose of common sense or irony designed to make people think…which isn’t necessarily practiced in any professional organization, let alone medicine.

Anyways I had just finished describing my plan which included enrolling in the combinatorial BRAF and Mek inhibitor clinical trial. Susan, in so many words, suggested I might want to reconsider my position.

I thought it was odd how un-enthused she received my plan.

“I’ll send you the pdf, and we will talk on Monday,” she said, “oh and please don’t tell anyone I gave this to you” and hung up.

That was a Friday, the end of our conversation, and though I didn’t know at the time, it was a test.

The paper turned out to be a fat paper of papers, boiling over with a couple hundred pages (at least) of medical jargon… enough jargon to inflict eye-roll-back-disorder and a coma like state of duh, within seconds of reading. But I was “in”, committed, and otherwise motivated. Besides if I could get through Heidegger, Joyce or Foucault or those thousand page engineering books without blowing my brains out (yet), I could do the medical foo too.

There was actually, I found, a certain amount of treasure hunting involved once I got started. As a newbie to that world I didn’t understand all the terminology but wanted to unlock its secrets nevertheless. That meant wading through stuff like this:

…9x11mm ill-defined and spiculated nodule with surrounding ground glass density (aprox 1mm larger than previous scan) in the superior segment of the right lower lobe. Primary differential consideration is primary lung neoplasm although active fungal disease could have the same appearance. Biopsy should be considered. (air bronchograms extend near the margin of the nodule but definitely do not extend through it)…ad infinitum…Cha-Chink-BOOM!

pulling hair out

Luckily, most papers in this collection had introductions and conclusions and the conclusion I eventually arrived at was that doing the BRAF and Mek1 targeted therapies was not advised, yet. The melanoma megla-maniac-minds recommended instead, as in my case, that a “low tumor load” (my condition at time) was a better fit for immune therapy. In such cases there was some measure of time to see if the intervention would work. The targeted therapies such as BRAF and MEK1 could, in turn, be kept in reserve as a last ditch effort should the immune therapy fail. As I recall, @ 70% of people experience good results with targeted therapy.

However, after 6-12 months almost all (the paper discussed) patients develop a resistance to the treatment. Even though my original plan was novel, in the sense that they were combining BRAF and MEK1, the collective wisdom was that patients doing this would eventually develop resistance. So perhaps the best course, they suggested, was to go for an immune therapy. These carried a much lower success rate but, when they do work, can result in longer lasting or “clinical” outcomes. If these fail, I could then go with the original plan which had a higher short term success rate but more morbid long term prognosis (Note: new studies have shown that even when somebody develops a resistance to a targeted therapy, sometimes they can be reapplied or re-tried with success; if interested, google “re-challenge” and “braf inhibitor”).

Okay, so if you are still reading and that last paragraph did not cause eye-roll-back-disorder or a catatonic state of duh, what’s my point? The point is being informed was my job. Despite a strong desire to have somebody of authority (Susan, the doctors, Somebody dammit) tell me what to do, I had to make a decision on my own. As I’ve shared/whined in the past it can be agonizing how little doctors actually participate in the decision making process. This seems in direct proportion to the severity of the diagnosis. Anyone that is hoping for a authoritative direction when it comes to dealing with advanced stages of Melanoma may be in for the same comedy of disappointments (kind of ironic or maybe pathetic though that I whine about this when all but stated above I don’t like being told what to do). So, either I could educate myself and try to make the best decision…or not.

But, as Susan guided me and lived her life by example, it was my job alone to do this, 1 billion pages of medical highfalutin lingo be damned;or even the doctors and clinical trial process be double damned for that matter. I mean, some of the same doctors that had signed/contributed/read/reviewed the aforementioned super duper topic secret paper of papers and attended the all mighty seminar, were the same ones who with a straight face recommended that I do the first clinical trial. Sure, do the targeted therapy Monseigneur Guinea Pig, even though we think that immune therapy is probably your better long term option…alright, alright this is getting a little carried away…don’t think there was some mass conspiracy, a plan by the man to keep a poor melanoma patient down. True there are a few idiots and a-holes out there (have had a few appointments with some of them…as someone intimately familiar with idiocy and a-hole-ness, I feel qualified to recognize one…hmmm…feel the topic of my next blog coming on). All rambling aside, there are indeed some serious flaws in the clinical trial process (great blog post on this subject here, see chaotically precise, The Problem with Clinical Trials) and, okay dead horse being beat um deader here, my job is to be in the know bro.

Lesson two came next. I got a list of doctors across the continental US to go see. I didn’t have to see all of them, but at least some were, um, highly recommended. Why? First off, and as I’ve said before as if it were my own (now you know even more that I have no original thoughts), these were melanoma doctors that specialize in melanoma patients using melanoma medicine. Nothing against the vanilla oncologist, but this makes more sense. They are in the game, every day, taking lay-ups, practicing free throws, and hopefully getting in a few slam dunks on melanoma.

What’s more, as Susan taught me, I was building my network of contacts. I might need the full team if I was in the this fight for a long time. And I since found, just as she taught me, that not only was it important to find the right, specialized doctors; but I might need to call or email all those doctors on the list with questions or additional treatment options. Making an appointment and showing up on their doorstep at least once, makes it a lot easier to get a hold of them, down the road, with questions, again. These are some good dudes too and they get back right away; this because all the good melanoma doctors are on major pharmaceutical grade methamphetamines and they don’t sleep (but its okay because, um, their doctors and these specific meds are non addictive, really).

Wonder if I should crank call one of them now?

Or maybe offer a joke?

Joke about NASA, Full Of Bright People

Three men were in a NASA conference room to decide how to spend $10 billion.
“I think we should put our men on Mars!” said the first man.
“Ooh, good idea,” said the other two.
“I think we should put our men on Venus!” said the second man.
“Ooh, good idea,” said the other two.
“I think we should put our men on the Sun!”
“How are you going to do that?”
“Easy. We go at night.”

Anyways, when it comes to medical decisions your mission, or Susan will come back and haunt you up, should you choose to accept is:

  • Never tell me what to do… or call me Francis for that matter…or I kill ya. I suspect Susan would have too.

  • Be informed, read stuff, even if you are scared or feel inadequate to do so; or, as they advise in other circles, if you can’t do it find a friend who can for you
  • Realize I know something about a-holes and might blog about this next, you might want to skip my next post
  • Seek out the good doctors and build a relationship or team of them to call on…never know when you need a good post up guy or three point shooter
  • Remember that the good doctors take lots of uppers and don’t sleep at night so its okay to email or call them and don’t worry because they are doctors and they won’t get addicted but you will man so like cut that crap out and like ‘Just do it’ …ah, that is, I mean be like Nancy not Mike and ‘Just Say No.’

Honoring Susan

The following quote arrived in my inbox today and it made me think, again, of Susan Steel.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of those depths.”

Elizabeth Kubler Ross

We’ve been thinking about her a lot over the last few days, since hearing the news she passed away. For those that did know her, she was a long time Melanoma survivor who started, among her other accomplishments, the Skin of Steel foundation. She was not only an intimidatingly smart and perceptive woman, she had a huge heart for us sick melanoma folk, a real spirit for family (I could totally relate to her desire to see her kids grow up and fight like a mofo to try to make that happen), and an awesome sense of humor. What’s more Susan was a tough as nails customer when need be…10 years ago when she got diagnosed there was almost no hope for us, yet she survived and helped a ton of people in the process. You can read more about her compelling story here.

Besides saving my life with her initial advise after I got my Stage IV Melanoma diagnosis, Susan pointed me towards a number of things:

  • When you get a tough diagnosis go to the experts. For instance, if you have melanoma find the melanoma docs. A general oncologist might see 1 or 2 melanoma patients per year. A guy like Omid Hamid in LA at the Angeles Clinic sees a couple of hundred, besides having a vested interest and passion for fighting this specific malady. It stands to reason that the quality of care (as expressed by knowledge, intent, access to the latest treatments/ideas/approaches etc) is probably going to be higher. So, if you can do it, seek out the experts. Its worth the effort.
  • There is power in applied information sharing. Simultaneously amazing and tragic, the medical and pharmacological research communities do not share information very well. More than 50% of the findings gathered during clinical trials, for instance, are never publicly disclosed. Say what you want/draw your own conclusions about this and the closed nature of this system, Susan set out to do something about it. In her typically astute way, she saw a real opportunity to take a bite out of this close door problem. In particular, she saw how tissue banks where dramatically moving forward research in breast, colon, lung and other cancers, leading to new effective treatments. So she took the initiative to start SOS with the expressed purpose of doing the same for the fight against melanoma. Someday, when the cure(s) are prolific there could be one named after her.
  • You can be a smart and strong, even when your sick. Susan traveled from Chicago to Colorado for the benefit dinner thrown by the Fay Family Friends (F3, https://www.facebook.com/search/top/?q=f3%20-%20fay%20family%20friends) even when sick, just weeks after getting another gamma knife treatment. She delivered a powerhouse speech and provided a huge jolt of positive energy and hope for our family just by showing up. She had an aura and power about her and was a true melanoma warrior bad ass.

susan at benefit

Susan at Leland’s Benefit Dinner in 2012. Her beautiful daughter Sacchi pictured here too (far right)

Finally, I’m including a text from our friend Polly who, eloquent as usual,  said this about Susan:

“Leland I am so sorry to hear about Susan. there is just no way for that not to be terrible and sad news. The reed I grab for is her everlasting fingerprints in so many lives and families- your own included, where she played such a pivotal role in finding a new way to be in this battle. I was part of an ad campaign once and it was called “on the shoulders of giants”, a term I don’t think was original – I’m sure it’s borrowed from something more well known then I am aware of; however, I think of that a lot —-she was a giant. Giant footprints left to follow.”

God bless Susan Steel Ishida, always.

You can find out more about Susan  foundation @Skin of Steel

Funeral and some nice tributes: Susan Steel in Memoriam

Post featured on The Good Men Project

TGMP re-purposed one of my previous posts today. It was essentially about coming to terms with who caused my cancer – namely, me. It’s also, I hope, a cautionary tale for kids thinking that an obsessive/excessive tan (from tanning bed or otherwise) is a good idea.

What I didn’t say but want my boys to know is along the lines of the cliche-ish, ‘Its not how you look but who you are and what you do that’s important.’ Believing otherwise was my problem. God willing I hope I’m around to celebrate the zits on the boys’ faces when that time comes (and I know Sarah will undoubtedly enjoy popping them) while continue sharing these types of messages with them.

View the essay @ The Good Men Project here: “The Only Elephants in This Room are Under My Skin.”

Thanks to the editors for publishing!

GTY_tanning_florida_jtm_131226_16x9_608

98 Brain Tumors Later…

Here’s the cliff notes of what I want to say with this post to my friends with cancer, melanoma, brain tumors, myself (which is close to the number of people reading this blog), et al of you tonight, right now:

Don’t give up.

  • Even after cancer spreads through lymph nodes to liver, lungs and stomach in a few short months after diagnosis
  • Even when you get told you have 43 brain tumors and likely 6 weeks to 6 months to live
  • Even after you get unceremoniously kicked out of the clinical trial you’ve been doing, once a week, 1000 miles away, for the last six months
  • Even after 9 months of stereo-tactic surgery and immune therapy side effects gone wild
  • Even after you discover you actually had 98 brain tumors all along (not 43 tumors, this is an extreme version of a cranial “clerical error” 0-;) and “get to do” six more months of cranium drilling, tube riding radiation – yeehaw
  • Even after you to do brain surgery to remove one particularly nasty necrotic mother-bugger

Why? Because there is still a chance. There is man. Even if you are not feeling or believing that. There is a chance today. So don’t give up!

I know-I know-believe me I know- this is easier said than done. When you are in the middle of The Shat, it’s just not that easy.  In fact I drove myself all up in and around crazy town, getting confused by all the crazy town street signs, all the crazy town people and crazy words and crazy arse music, worrying about the 1098 crazy things I couldn’t control. Eventually I had to give it up. Somehow or another the lesson of worrying or getting fearful and pissed wasn’t going to make anything better.

So maybe the message is: Give up don’t give up? I guess that’s right.  Doesn’t really make a lot of sense at face value but whatever. But if we can live with other vaguely inept statements in the English language like “exact estimate”, “pretty ugly”, “only choice”, “seriously funny” or “clearly misunderstood” we should be able to accommodate “give up don’t give up” (however clunky the statement sounds).

There’s always the serenity prayer which does a pretty good job of summarizing the sentiment involved:

Lord, Grant me the serenity to
accept the things I cannot change,
Courage, to change the things I can, and
Wisdom to hide the bodies of those people
I had to kill because they pissed me off.

What a tic, that’s not it, please don’t mention that faux pas to my parole officer, case worker, psychiatrist, parents, psychologist, psychic, sponsor, friends, priest, minister, wife, kids, employer, cats, dog (especially the dog, she thinks so highly of me), here we go, sorry:

Lord, Grant me the Serenity to
accept the things I cannot change,
Courage, to change the things I can, and
Wisdom to know the difference.

And in the words of some immortal friends from another bunch of beloved crazy-pantsed people I know…’C’monnnnn Wisdom!’

PS. Am back to work after the holidays which gave me occasion – while waiting for code to compile or listening (attentively of-course) in meetings – to catch up on what’s happening in the world of melanoma research. Anyways this fairly recent summation of previous published research made me think of the above. I was reminded today of how low down I felt looking at the numbers, stats and treatment options three years ago. There was no encouraging kinds of research like this available. But, the interventions discussed in this article are in fact what I ended up pursuing:

Brain metastases, melanoma, stereotactic radiation, and nivolumab

If I can help, encourage or assist you my friends please let me know and peas be with you always.

Image result for peas be with you

Image result for peas be with you

 

 

And not huge a fan of profanity in print but, while on the subject of peas, this is funny, don’t care who you are:

Image result for peas be with you

Unexpected Gifts

It’s not like when you hear “you have six weeks to live” you start thinking “oh man hope I get to see that Star Wars sequel someday” but when you do find yourself in that position three years later it does kinda feel like unwrapping an unexpected or forgotten present underneath the Christmas tree.

We saw ‘Force Awakens‘ last Tuesday morning, along with rest of the known universes.  While it wasn’t the near-religious experience of the first (okay the fourth) Star Wars at 7 or 8 years old (TOTALLY BLEW MY MIND), there were similarly strong feelings evoked.

Grateful was I. yoda

Grateful to be getting to see #7, sitting down with a full tub of popcorn with Sarah, Mom, and the boys at 9am as the first strains of the SW’s Overture fired up.

And hopeful (I was) too. I mean maybe its not too late to become a Jedi?

Here I’m a little confused though. There’s so many choices, choices, choices.

It seems in addition to the Church of the Jedi’s various motions to become an officially recognized religion around the world, there are a number of sects popping up. Go figure! A religion with different strains popping up!

Here’s a sampling of what’s out there:

  • Argenteum Astrum – Facilitate, encourage, and promote the Jedi Order as a spiritual path through life. Our way is primarily based upon Buddhism and Hermetic Traditions & Principles. As the belief in Jesus defines Christians; How, we see the Force defines us as Jedi.
  • Arkinnea Jedi Order – Jedi Order dedicated to the spiritual side of Jediism
  • Br1mmStone –Columbus Ohio U.S. based, I teach.
  • Gadian Society –The history of the Jedi from 8500 bc, their ways and teachings as sought after by George Lucas.
  • Jedi Path –Walking the Jedi Path without the mysticism. The Jedi Path is not a religion, it is an applied philosophy, not a collection of beliefs but a collection of attitudes.
  • Simon Dunn –Peace to all JEDI, let the Force flow free and true.
  • Trust In The Force –The “Force” Itself is the source and Creator of Life and it is Love (not sex) that makes it grow. The Force is a call to all Jedi’s and real men to stand up and fight for Good.

Fascinating. Hopefully they can all just agree to disagree; while agreeing on one common Force to rule them all.

The good news is that I can apparently remain Christian while pursuing a Jedi discipleship… if this choose I do.

From the Temple of the Jedi Order,

The Jedi Creed (Christian Jedi Orthodox Version),

I believe in the Living Force Of Creation and all that is seen and unseen. I am a Jedi, an instrument of peace; Where there is hatred I shall bring love; Where there is injury, pardon; Where there is doubt, faith; Where there is despair, hope; Where there is darkness, light; And where there is sadness, joy. I am a Jedi. I shall never seek so much to be consoled as to console; To be understood as to understand; To be loved as to love; For it is in giving that we receive; In pardoning that we are pardoned; And in dying that we are born to eternal life. The Living Force Of Creation is always with me; I am a Christian Jedi.

Sounds suspiciously like St. Francis of Assisi paid a visit to a Jedi temple during his travels…

Anyways, we enjoyed the movie. And there’s been a lot of other gratitude inducing events over the last few weeks:

  • Another Christmas Eve dinner with our good friends the Avery’s (a tradition now, a few years in the making…traditions, like unexpected surprises, are equally righteous)
  • I turned 45 years old last week. Whoa Grandpa. Get out the Depends and knee sock garters.
  • I spent 2 weeks away from the salt mines for a staycation with family; and, with the exception of one night of extreme barfing, was a relatively pain and treatment side effect free experience.
  • Got good results from MRI last week. Thank you God. Brain is “stable.” Queue the running joke about brain and stability.
  • Speaking of running, Derek has decided he is now a trail runner. Nothing like crashing through Colorado foothills with your son and dog in crisp 15 degree weather. We did 8 miles over two days. Complete fun. Glad I didn’t face plant while capturing video.


This met with Elsa’s approval as well:
IMG_1243 (1)

  • Played old school pond hockey ’til we dropped this week in Evergreen CO. Evergreen is ranked as one of the top 10 ice skating experiences (11 rinks + huge free skating rink) in the world. Seriously fun. Was every bit of a top 10 experience with boys.

hockey ev2

Led to a true Christmas miracle.

asleep

  • Finally, circling back to the original topic, there’s an invasion of gratitude inducing, Star Wars stories, media, and other related pop cultural artifacts crashing around the internet like prolific space debris tumbling through a Hoth asteroid field.

There’s this:

Reminded me of the classic:

And I desperately want a few of these for our dinning or living room (not sure if Sarah will go for it)

https://tookapic.com/dvader

What to wearI might be dyingOh well

 

Will frame next to these album cover makeover mashups:

http://mentalfloss.com/article/73051/15-amazing-star-warsclassic-album-cover-mashups

12196320 545041452315014 691746548174200559 n This Star Wars/Classic Rock Album Mash Up Series Is the Best Thing Since Anything

 

Bearded Wondering

shaggy

Last weekend I tried to play my part in the hirsute movement with a 5 or 6 o’clock shadow; okay, closer to 2 or 3 o’clock (a.m.).  Granted it was a weak showing with no hipster cool handle bar mustache, mouth brow, grass grin, flavor savor, chin curtain, goat tee, or fu manchu to be had… more like a scraggly, Shaggy outcropping and an altogether poor excuse for “beard.”

Yet, while my lame attempt may not have heralded a new epoch in men’s facial hair, make no mistake it was historic. You see last weekend somebody insinuated that I, Leland Fay 44 years old, old-but-not-that-old-at-least-I-thought-until-now, am a ‘Grandpa.’

Image result for old man shaggy of scooby doo

The exact words were, while out on a walk talking to a lady about my puppy dog Elsa, ‘Oh you’re grand kids must love her.’

I think my response was a wilting, “Err yeah.”

Inside hallow man screamed.

 

Okay not really, or whatever, um kind of, croaked.

Either way its the beard’s fault man. That stubble done-done me wrong.

Since starting on the various medications for cancer 3.5 years ago my facial hair has gone from dark to salt and pepper to white. Now I’m ‘paying’ for it. Gonna think twice, maybe, the next time I decide to forego a razor for a few days. Will say to myself, “Leland says I, snap out of it, you are not looking all George Clooney more like Col. Sanders.”

Then again, perhaps I can take comfort in knowing that clean shaven might be a better option, health-wise, in the long run. I’m thinking about this article I read in the NY Post awhile back entitled, Bearded men have poop on their faces.

Note: If you have been reading any of my posts for the last three months, it should not surprise you that somewhere in the back of my hairy brain I remembered reading this and a weird synapse fired.

Here’s the quote from feces on face article:

According to a group of microbiologists in New Mexico, the rancid bacteria that beards collect could be putting owners’ health at risk. Microbiologist John Golobic, of Quest Diagnostics, swabbed a number of beards searching for bacteria for the study and found that some of the bacteria “are the kind of things that you find in feces. I’m usually not surprised, and I was surprised by this,” he said. “There would be a degree of uncleanliness that would be somewhat disturbing.”

Ha! Take that beard masters of the universe, maybe, but wait…

Is a little bacteria necessarily a bad thing? Not enough microbes in the diet, on our hands, or in our hair a harbinger or perhaps another symptom, on a macrobiotic level, of possible environment crisis? This article is wild, “How the Western Diet Has Derailed Our Evolution.” Scientists were shocked to find that an isolated tribe in Africa harbored a far more diverse and complex set of intestinal bacteria than average modern man. In turn, that tribe had virtually no incidence of modern disease.

Many who study the microbiome suspect that we are experiencing an extinction spasm within that parallels the extinction crisis gripping the planet. Numerous factors are implicated in these disappearances. Antibiotics, available after World War II, can work like napalm, indiscriminately flattening our internal ecosystems. Modern sanitary amenities, which began in the late 19th century, may limit sharing of disease- and health-promoting microbes alike. Today’s houses in today’s cities seal us away from many of the soil, plant, and animal microbes that rained down on us during our evolution, possibly limiting an important source of novelty.

And you may recall, and as previously discussed a few weeks ago, that having the right microbes on board can potentially play a critical role in the success or failure of immunotherapies (the treatments I have been on).

From a recently published article in Science Daily

Introducing certain bacteria into the digestive tracts of mice with melanoma can help their immune systems attack tumor cells. The gains were comparable to treatment with anti-cancer drugs known as checkpoint inhibitors. The combination of bacteria and anti-PD-L1 nearly abolished tumor outgrowth, report scientists…Checkpoint inhibitors such as ipilimumab (Yervoy), nivolumab (Opdivo)  and pembrolizumab (Keytruda) have had a dramatic impact on treatment of several tumor types, including melanoma, lung cancer, head and neck cancers and others. But only a minority of patients — one-third or less — have a vigorous response. Cancer researchers have wondered why so few benefit…They found that introducing the bacteria was just as effective as treating them with anti-PD-L1 antibodies, resulting in significantly slower tumor growth. Combining the benefits associated with the bacteria with anti-PD-L1 treatment dramatically improved tumor control…

So, alright, I dunno.

Maybe I need to cultivate a facial fro, for health reasons. Never gone the distance, you know like more than a week without a straight edge, but perhaps its time…

Not sure how “tickled” Sarah will be with this; but hey if its for health and I can live with the Grandpa “bristles”, I should perhaps do it. And there’s that old saying about how ‘being old is a privilege, denied to many.’ So true.

This little excerpt from Frasier doesn’t really fit as a way to end this post, but’s its funny and better than my, um, balding “tickled” and “bristles” humor.

Occasionally you fool yourself into thinking you can do it. It never ends well.

Notes from Inc.com interview, ‘What 98 Brain Tumors Taught Me’

Amy Morin, author of 13 Things Mentally Strong People Don’t Do and I recently had a great discussion regarding some lessons learned, after hearing I had Stage IV Melanoma, including 98 brain tumors and a six weeks to live prognosis.  Thankfully its three years later and I’m still here. She wanted to know what I might have learned from the experience and the intervening years.

The result of our conversation was posted on Inc.com today.  You can check it out here: http://www.inc.com/amy-morin/5-life-lessons-a-terminal-diagnosis-taught-this-courageous-man-about-life.html?snmefr and thank you Amy for taking an interest in me and my story; as well as doing such a fantastic job summarizing some of the main points we discussed.

In addition to our conversation, I also had some notes. Not all made it into the above because a) there’s a word limit; b) yeah, I can be a little wordy.  However, I thought I would capture them below in case they are of use to someone facing or helping someone face a daunting health crisis like mine.

So, here goes…

“What 98 Brain Tumors Taught Me”

1. Forgiveness.

Melanoma is something like 95% curable if caught during early stages; and, conversely, deadly when it enters later stages. In my case, the dermatologist I was seeing misdiagnosed the bump on my scalp, thinking it was a fatty cyst. By failing to biopsy the mole, which in hindsight he should have done due to its characteristics (classic ABCDEs – asymmetrical, border, color, diameter, evolution, search for ‘Melanoma and ABCDEs) he catastrophically screwed up.

But, I know from my career as an engineer that everyone – especially yours truly – makes mistakes; especially when dealing with complex problems. Either way, I knew instantly if I was going to survive this terrible diagnosis that I had to forgive him. Otherwise it would consume me. I was not going to throw away what time I had left on hate. I forgave him.

The situation can still make me feel angry but I have spent close to 0 time stewing about it. When it does come up I remember to let him off the hook, think about my own imperfections, and remind myself that forgiveness is a practice; it is a conscience act of saying “I forgive this person” and then, if the temptation to spin off into some indignant, self-righteous anger comes up, kick it out.

2. My participation required.

Our society maintains a certain mystic around the medical profession; that doctors have all the answers and should, by virtue of training and position, make every call regarding health. For cancer at least (probably because no silver bullet exists yet), this is not the case. So I had to step up, get through the fear, look at the data, talk to friends and family, pray, and decide. This included deciding on surgeries, chemotherapies/immunotherapies, clinical trials, and even weekly trips, for six months, from Colorado to California.  It was on, or at least partly, on me.

3. Embrace the fearful internet.
There is a prolific amount of information out here. It drove me crazy but was a net gain. I read everything. I made bad decisions as a result; but also made some good ones.

Intel has stated that Moore’s Law is cooling off (the “law” that stated computing power would essentially double every two years while computing capacity growth slowed). A 2011 study in the Journal of Science, showed that the peak of the world’s capacity to compute information was in 1998. Since that time, technological growth has slowed. Post 1998 each new year allowed humans to carry out approx. 60% of the computations possibly executed by all existing general-purpose computers before that year. Fun stuff to think about…okay only if you are a nerd…I wonder why Amy chose not to use this…but continuing nerdeuphoric information…

While Moore’s Law cools, the amount of available information grows.

Buckminster Fuller created the “Knowledge Doubling Curve” when he noted that until 1900 human knowledge doubled approximately every century. By World War II knowledge was doubling every 25 years. Today things are not as simple as different types of knowledge have different rates of growth. For example, nanotechnology knowledge is doubling every two years and clinical knowledge every 18 months. But on average human knowledge (um average human knowledge) is doubling every 13 months.  According to IBM, the build out of  the “internet of things” will eventually lead to the doubling of knowledge every 12 hours (http://www.industrytap.com/knowledge-doubling-every-12-months-soon-to-be-every-12-hours/).

So what’s the point.  THE POINT IS that just because knowledge is doubling that does not necessarily imply or equate to quality. For example I just cut/pasted/plagiarized (some 0-;)  some information regarding statistics without citing my sources.  That is happening  everywhere.  So, again THE POINT IS search but be careful.

4. Lean on friends.

Advice from friends and family. My wife in particular, along with a few close friends, provided sounding boards for what I was reading on the internet and hearing from the doctors. There is also plenty of research “out there” that suggests cancer patients with a strong support group have, statistically, better outcomes.

5. What matters?
I will never “wish I would have spent more time in meetings.” I’ve lived that. The first thing I thought of when I got the news were my wife and kids. I was, ironically, at work when the doctor called. I went home to my family. That’s what is important when you get news like that.

6. Hamburger, shakes, fries. Whatever man.
I was a chronic cheeseburger obsessed aficionado-addict-aholic. But after reading anecdotal, personal experiences who radically changed their diet and received ‘spontaneous remission” (someone survives cancer without the medical explanation), I said “no” to meat and refined sugar three years ago. Every time I have been tempted I think about 98 brain tumors, my wife and kids, and how I never want to get told I have progressed or new cancer again. Doesn’t mean I won’t receive that news – I get that – but if I do I want to know that I punched back hard. This includes a near fanatical devotion to exercise every day as well diet. Here’s a little more detail on diet which I’ve followed for last three years (http://www.budwigcenter.com/the-budwig-diet/#.VmEXTHarTIU

7. I’m no terminal super hero.
What’s that Queen Latifa movie where she finds out she has a brain tumor and goes out and lives her life to the fullest? Pah! Or the myth (maybe its not a myth I don’t know) about how when people receive the news they are going to die, they suddenly start shooting rainbows out their fingertips (or, um, nether regions)? Yeah, I didn’t get struck perfect, knighted, or welcomed into the community of sainthood by virtue of a terminal diagnosis. Just ask my wife, kids or friends about my un-rainbows. Do I think about life a little more and appreciate it, yeah I think so. But its still life, I’m still me, and I’m still living in the middle of it.

8. Know thy life insurance.
It is very important, if I die, to make sure my family is covered. Fortunately, they will be as long as I am in the employ of my company. That’s the rub. I would advice anyone to do this now – find out what the terms of your life insurance are. I highly recommend getting a policy that is not tied to your job. Lesson learned.

9. Kind and Assertive.
Those kinds of principles should not be mutually exclusive, especially when dealing with insurance companies. You have to be ready to fight for treatment options and care. At the same time it does no good to do it with an angry voice or berating attitude. Its not that there is some master malevolent plan or the folks on the other end of the phone wanted to see me hurt. But, as with any large corporation or human system where policy and ultimately human frailty are involved, there’s gonna be trouble sometimes. I got great care from my insurance, but we had to work to get there.

This goes for treating medical staff and doctors as well. Its an art, even when in pain at times, to be kind yet assertive. I could also say something here about how we absolutely don’t want socialize medicine but, actually, should be working towards personalized medicine models (especially as it relates to hard to solve problems like mine); but that question of social medicine has become more a debate over emotionally over-charged, political views than good, reasonable discourse and logic.

10. Euphoria is the absence of pain.
I realized this recently having been in some acute, chronic pain from treatment, that euphoria = no pain. Euphoria translates to something like “to bear wellness” ((/juːˈfɔəriə/; from Ancient Greek εὐφορία, from εὖ eu, “well”, and φέρω pherō, “to bear”)…this is different than the more modern use of the term used to describe an all night “rave” under the blinking lights at a club in a back alley in Borneo. This train of thought leads me to wonder whether we are born euphoric, in a state of well being that is euphoric…just being our healthy selves is not only a privilege but actually a state of euphoria, we are just maybe too ‘caught up’ to realize it.

11. Death to death. 
I am a Christian, raised Catholic but now practicing Lutheran (God rest my Grandmother’s soul, and sorry Father S, Mom), but am also “blessed” with a constant cycling brain and engineering background. I know intellectually that believing this life is not the end is, ultimately, a matter of faith. We either choose to believe it or not and I choose to believe it today.

That said, what helped me was to read about near death experiences (http://www.nderf.org/) as well books like “Proof of Heaven” by Eben Alexander (neuroscientist who had profound near death experience) and Kubler-Ross’ “On Life after Death.” I found personal experiences more encouraging at times than remote or abstract statements about what happens next.

Love what Walter Murch, one of the mad geniuses behind The Godfather and Apocalypse Now, had to say in recent interview for Nautilus,

“…it’s very presumptuous of us to think that we are the end of it. Yes, we can perceive everything that we can perceive, and we can perceive downward pretty efficiently thanks to science…but constitutionally, I would say, it’s impossible for us to scientifically perceive upward. We have intuitions about that, which is the whole idea of religion…There is a kind of science in the Bible of, don’t eat pork, don’t eat shellfish, these things, behavioral stuff; but what are these based on? We now know what they’re based on and we can see the larger picture because we’re further down the road, so my hunch is that, I mean it’s a hunch, but a belief is that there are many levels beyond us and I don’t know what those levels are but I know that they are there…”

So the point is it is possible to not really understand something prior to believing or accepting it. That does not make it any less real, missing or not there.

12. Yeah, go figure, Einstein was right about relativity.
Einstein’s theory of relativity just celebrated its 100 birthday. Within the pantheon of his well weathered theories, is the statement that time is an illusion. I have, looking back, experienced that…I remember 6th grade Grammar class seeming to stretch on for back to back eternities, forever; then, when you watch your kids go from birth to 10 in a blink of an eye.

The experience of the relativity of time is my personal experience…and I realize that if I survive another 5-10-20-30-40-beam-my-consciousness-into-a-billion-cyber-years-God-forbid, at some point I will again, just as I did when I got the cancer news, look back and realize how quickly it went. Time stretches back but is gone, whoosh. This is a description of the human, emotional experience of time rather than the harder science in which Einstein proved relativity (sorry Newton). But either way, against this backdrop of time elasticity, there is the “moment” which was gone when I wrote “moment” (damn there it goes again), so I might as well try to enjoy it.

13. Kubler Ross was right too.
I spoke about Kubler-Ross above…she’s most famous for describing the five stages that all people go through when they are dying, according to her studies and work with terminal ill patients.  The stages are, as stolen from Wikepedia:

  • Denial — The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
  • Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.
  • Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise.
  • Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” During the fourth stage, the individual becomes saddened by the mathematical probability of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
  • Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”; “Nothing is impossible.” In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

Of-course this could be considered a bi-product of modern life. We can often see our mortality way in advance, know what is going to kill us, days-weeks-years before we die.  Either way, my experience is that I did not go through these stages just one time; rather over and over, sometimes many times a day…or at least I went through the first 4 stages this way many times until I reached acceptance. That acceptance was or, really is still today (because I sometimes repeat this spin cycle), the realization that whatever happens everything is okay, is to a certain degree out of my hands, and will be whatever it is meant to be.

So, I can and will try to the best of my ability to participate in my health, to lean on my friends and family, to have faith and do whatever I can in my power to be healthy, but at the same time I have to accept whatever will be, will be and is.

That’s it, that’s all folks, hope these notes from my convo with Amy helps someone. Peace and, as always, let me know if I can help or share any experience with you.  I will respond to each email personally, leland.fay@gmail.com