One can always hope, as I did, that the lump on my neck was the result of a benign swollen lymph node.
The “C” word.
Cantaloupe? Cacafuego? Catch-fart? Confuddled?
Some mild progression got me summarily kicked out of my last and fifth trial.
So onto the next party at a clinical and/or research oncologist somewhere hopefully remotely near me.
My friend Dr. Omid Hamid, who I had the pleasure of seeing in LA a few weeks ago, put a very positive spin on that; that is my situation. In general, after spending a good hour and half with me and re-acquainting himself with my dictionary sized charts, he said that I am doing well and the lack of disease in my more important bits – like vital organs- is proof that the interventions (eg the different treatments) are working.
I know I have talked “epigenetics” in other places in this blog (queue the snarky, ‘ahem, when you are here’) but having someone of his reputable position be human and positive, does my body good. In my view that sort of thing is as important as prayer, nutrition, exercise, and Jack Handy affirmations.
He even gave me a hug at the end and said “you were a good save.”
Thank you Dr. Hamid and to Martin and Cheri for schlepping me around the City of Angels.
Onto another set of treatments…fortunately in Colorado…more names that are hard to pronounce – nivolumab and ipilimumab, also known by their US brand names using two parts instead of three…guess the marketing folks must think it easier for those of us syllabling challenged simpletons to remember, opdivo and yervoy.
I will also be getting biweekly injections of, wait for it, talimogene laherparepvec, known by US brand name Imlygic which someone had the good sense to just acronymize to “TVEC.”
T-VEC is an oncolytic virus therapy, a treatment that uses a virus to infect and kill cancer cells while avoiding normal, healthy cells. T-VEC is made from a genetically modified herpes virus, commonly known as the cold sore virus. The therapy is designed to replicate inside melanoma cells to kill those cells. It may also enhance the immune system’s ability to fight cancer. https://www.curemelanoma.org/patient-eng/melanoma-treatment/immunotherapy/t-vec-imlygic/
So yeah, not sure if you caught it or if your eyes rolled into the back of your head when you started reading the gripping description, but I’ze gonna getz mez some herpes baby!
Want a kiss?
And while waiting for questionable cold soars, I can fend off questionable looks to my neck, where the doctors probing needles have resulted in a rather sketchy series of black splotches.
Look, a more appropriate title for this post should probably be, “To No Hair and Back,” but that didn’t sound as “cool” … not that anything done or said on this blog necessarily fits neatly onto a Fonzarelli scale of coolness. The very mention of the Fonz should provide a strong indicator of my relative low-to-no-score on the cool assessment index.
Regardless, I thought starting with “hair” made sense since I ended here many months ago without it. The hair has returned since recovering from TIL treatment for metastatic melanoma.
Here I am recently posing for a record 67th GQ shoot. You are looking at the “Sexiest Middle Aged Man with a Bag over his Alive Award” 2018 recipient. So tubular.
Forgive me reader, it has been @ 150 days since my last post. I am pleased to report that I am still hair – I mean – here.
Speaking of that last bit, I spoke to @ 20 3rd year medical student this week. It was fun. The subject was basically “tell us about your experiences with medical community in the context of your medical history.” I tried to share a lot of the stuff written throughout this blog. It was a fun experience.
It was interesting…I remembered during that recent session one of the other main reasons I started writing here. Its really what drove me back tonight. I talked about how 7 years ago there was no one on the internet talking about how they survived 98 brain tumors. When I started this sight (can’t remember and too lazy to look “x” years ago) I had a few years under my belt and wanted to provide a little hope.
So if you are reading here now, looking for a bit of that hope, I am still here. I had 98 brain tumors along with tumors in my stomach, lungs, liver, neck, head. Still here man! Oh and I got to watch my kids grow another 7 years. I got to do some fun stuff at work. I recently got promoted to Chief Engineer position at my company. Shit did happen but so did I and I am grateful for it. I pray this happens for you too. Know that it can!
Think about this and forget about the statistics- there is probably no fatal disease out there in the history of man that has not had an exception, that somebody has not seemingly inextricably survived, against all odds. The ingrained is embedded in our history and in our future. Tap into it. What stories are you telling yourself today Mr or Mrs Underdog? If you need help coming up with one let me know.
As it turns out, I think hope is important. Maybe as important as any medicine I took or will take in the future. The Alt Medicine get it right. Push aside snake oil peddlers and whack jobs on the internet (yours truly included) one of the tenets of Alt Med is story telling. Almost invariably every web site “out here” that sells something non-mainstream comes with testimonials. If you research things like a epigenetics our thoughts may actually influence gene expression in turn impacting our health. People know and have known this for a long time – e.g. “As a man thinketh in his heart, so is he.” We don’t need a triple blind study or heavy scientific explanation to know or not know this…its available to us intuitively IMO. You can believe something even for the wrong reasons or with the wrong scientific explanation and it may still have a medical impact. There is nothing wrong with this! Anyways, that’s the kind of stuff we talked about…
You may also be happy to know that I feel good, believe I am doing well, and seem to be in relatively good health all things considered. We had scans last December and things were generally good. I am still not yet NED, operative word…one day at a time. I start a clinical trial this week involving some monoclonal anti-bodies. Going to be a party!
PS. Posted a show from DB new year’s run below. Glad to still have brain and ears to enjoy music of my favorite band.
Few will share such sentiments here. As Jerry Garcia was famous for saying, “We’re like licorice. Not everybody likes licorice, but the people who like licorice really like licorice.”
I almost didn’t go to LA. Within days of starting BRAF/MEK last September, I began to feel better. No more exhaustion. I could eat. Few side effects and a general feeling of wellness, like something was working. And ‘bonus’ there were less doctor visits, no regular infusions, less pokes and prods. I just had to pop a few pills on an empty stomach 2x/day. Subsequent scans indicated George Costanza’s archenemy, ‘shrinkage.’ In other words, the treatments was working. The cancer that started creeping back at the end of June was put on hold again and life returned to ‘normal.’
The problem is I’ve never been that great when things are too good.
And while 70% of people with Stage IV melanoma react positively to new medicines I have been on, Dabrafenib and trametinib, the honeymoon doesn’t last for the majority. There are few “durable” results. Median response is 24 months. So I could not reasonably expect for the new treatment to last forever.
I knew that going in. My plan had been to start investigating different medical interventions as soon as I started the treatment. My thought was I could then put this combo on the shelf while trying something new. We could always return if needed as a last resort, before I blew the tires or exhausted the combo altogether. I discussed this idea with my local oncologist and he agreed.
“But then again,” he said, “conventional cancer treatment would suggest that if a current treatment is working you stick with it.”
Translation, just keep flapping those wings Icarus!
Icarus was the son of the famous craftsman Daedalus in Greek mythology. His father was the creator of the Labyrinth, a huge maze located under the court of King Minos of Crete, where the Minotaur, a half-man half-bull creature lived. In order for the secret of the Labyrinth to be kept, Minos had then imprisoned Daedalus and Icarusin a tower above his palace. Daedalus managed to create two sets of wings for himself and his son, that were made of feathers glued together with wax. He taught Icarus how to fly and warned him not to fly too high, which would cause the wax to melt, nor too low, which would cause the feathers to get wet with sea water. Together, they flew out of the tower towards freedom. However, Icarussoon forgot his father’s warnings, and started flying higher and higher, until the wax started melting under the scorching sun. His wings dissolved and he fell into the sea and drowned.
Most instructive but not necessarily easy to practice when you find yourself flapping through cerulean skies with a Rocky Mountain view. I mean why not wait?
The gist is, in Lelanglish, if you have melanoma is GO SEE A MELANOMA EXPERT. There is a good study associated with the post to back that sh– up. Bam!
It makes sense really, the more you grok it. A general oncologist probably sees a few melanoma patients a year. An expert, or someone who specializes in melanoma in this case, sees melanoma patients all day, every day, 50 something weeks/year. He is attending the conferences, working with the drug companies, teaching the classes, doing the studies, living the life. Is this akin to the diff between a general practitioner who set a few broken bones in residency and an orthopedist? All I know is, if I break an arm I am going to the bone doctor. Same logic here.
Needless to say I went to see my old buddy and melanoma expert, Dr. Omid Hamid at the Angeles Clinic, in Los Angeles last week. Its sometimes can be an amazing experience when things are done the way they are meant to be. The ticket was cheap. The appointment was on time (miraculous!). The advise was likely priceless and potentially life saving. LA was fun and as always, an experience. Best of all we have a new treatment plan that hopefully will not involve me flying blissfully off into the sunset before somersaulting miserably into the ocean.
So that’s my unsolicited advise for the week to anyone with a tough diagnosis. I think the same principles apply to edgier medical cases, melanoma or otherwise. Its cliche but knowledge is power. Sometimes we have to get off the duff, not wait for things to go bad, and go get it. If someone heeds that message and takes the extra time/expense/effort that saves his/her life, hopefully that makes up for 3 months of silence here.
Merry Christmas, Happy Hanukkah, New Years and Holidays!
PS. Thank you to my family Martin and Cherie and the boys for your mitzvah in LA.
Five years ago I was sitting in my office at work when I finally got The Call. I had been nervously anticipating the news for the last three or four days, worrying about the terrified look in the nurse’s eyes after she’d taken a scoop out of the coal-black, ulcerated spider spreading its spindly legs across my scalp; moments earlier, the doctor’s friendly albeit slightly rout and disinterested demeanor grew pensive and serious when he pushed back my hair and examined the mole that had morphed from a tiny black grain to the nuclear fallout, orangutan assassin on my head.
Melanoma (the worst, most deadly form of skin cancer) is known to be 95% curable if caught in its infancy. Unfortunately my doctor botched the job, badly. His partner, who subsequently called and delivered the news, trembled when he spoke, his voice quaking over the phone. I remember fragments of what he said. The words are like hot shrapnel in my brain. When I think about them too long I am reminded that forgiveness is a practice:
“Clark’s level 5 primary tumor| Breslow depth 13mm | 22 mitosis | Ulceration present with suspected vascular invasion to lymph nodes| It’s very deep Leland.”
That moment was promptly planted with a small but powerful, mostly disturbing, undoubtedly life defining collection of flagpoles on my version of planet earth. I would struggle to tell you what I had for dinner two nights ago. But I can recall with perfect clarity where I was and what I was doing when I heard that Ronald Reagan had been shot, the Space Shuttle exploded, the Berlin wall was torn down or the World Trade Center buildings fell. The phrase ‘It’s very deep Leland’ feels no different.
My life had just changed for the rest of my life, however short that might prove to be.
Four or Five Days Earlier…
I sat nervously on the crinkled corner of an examination table in the dermatologist’s office.
“Probably nothing,” I said, hoping to bait the doctor into saying reassuring words,”Another false alarm in the life of the misguided hypochondriac, eh doc?”
There had been many frightful trips to the Dermatologist previously. I’d been going for years. Everything had been benign, chalked almost humorously to worrying. I wanted this time to be no different, another case of LVCR (Lacking Viable Cognitive Resources), microdeckia (not playing cards with a full deck), ineffective-copia, ridiculitis ginormous worryfromundus, symptomatic terminal whining also known as whinnoria, JHM (Just a Hot Mess), globus stupidicus maximus, or some other form of fictitious psychosomatic condition on my part. I wanted to blast from the office, past dolled photos of dermatologists arranged above the waiting room like lessor Greek Gods, exiting sparkling glass doors to the parking lot and the comforting arms of warm Colorado sunshine, happy to get the hay out of that place and sooo-sooo glad to have been positively mistaken, again, to call Sarah with gratitude in my voice and the Disco Biscuits pumping in the background.
Told you,” she’d tease, “it was nothing you Goof!”
None of that happened this time.
“Okay,” the doctor replied flatly, his thoughts suddenly somewhere else, “let’s see what the biopsy says in a few days and go from there okay Mr. Fay? I will call you as soon as I get the results.”
You don’t really want a Dr. addressing you formally. In my experience that’s an emotional stiff arm, signaling they don’t have time for niceties or need to a retreat into the comforting arms of emotionless, clinical jargon.
My nightmare was finally real.
After falling prostrate on my face, a frantic series of conversations with Sarah, family members, insurance representatives and receptions at doctor’s offices, I eventually found myself in full frontal, totally immersive, research mode. My tool of choice was of-course the internet and my surfboard was a laptop in bed (not with covers pulled over head but that provides a nice image and is in line with how I felt).
First the largest elephants in the room needed tackling.
How long do I likely have to live? What are my chances?
Let’s see, at the time, though no one had yet given me an official staging, I determined with the characteristics of the melanoma and the invasion into the lymph nodes, I was Stage IIIc. So that was like a 40 or 50% chance of survival. While terrifying at the time, 1:2 ain’t too bad in hindsight. In a matter of a few short months I would stared directly down the hallow barrel of a Stage IV, terminal, diagnosis with less than 5% chance and 6 weeks to 6 months, the latter if I was lucky (like Powerball-winner lucky), to live.
So Wait, um, Why?
Why relive this moment here? Why rehash the day I got the call from the teary voiced dermatologist describing the terrible misdiagnosis perpetrated, where a benign “fatty cyst” transformed into a highly virulent mega-monster melanoma-frankensaurus?
Well, it’s really a rather circuitous way to announce that we are now well past April 2017 which means that I am now well past the 5 year mark since my ‘pole in the ground’ moment.
I mentioned it last post but it was somewhat felt overshadowed by my letter to the boys. I thought such great news deserved a little more press for the 2-3 people reading this post here 0-; or for anyone who has stumbled across 98braintumors.com looking for some hope in whatever dark place they find themselves tonight.
I am now officially a 5 year cancer survivor!
5 years ago, 5 years felt like an awful long time. Got this quote in my inbox @ that time – last April 2017 – and thought it apropos in this context.
“Faith is taking the first step even when you don’t see the whole staircase,” MLK JR.
What do a diarrhea medicine, melanoma, the planet Mercury, planetary sized acne, and a hockey trophy have in common?
You know I’m going to gravitate towards the first topic like a fly to, um, stuff because a) its loosely about “stuff,” b) I’m just that immature and c) its regarding melanoma. Study results were published in the last few weeks involving an oral nitrofuran antibiotic used to treat colitis, diarrhea and dysentery in Europe and North Africa. Its all pretty interesting. Besides being touted as a miracle drug for the squirts and drippy tummies, “Nifuroxazide’ has recently demonstrated powerfully curative powers over cancers like myeloma, breast cancer, lung cancer, and melanoma. You can read the study here if ya want: “Nifuroxazide exerts potent anti-tumor and anti-metastasis activity in melanoma.” Sounds intriguing right?
Except that it won’t cost a billion dollars to develop cuz it already exists as anti-bum gravy drug and so probably won’t justify charging consumers the equivalent of $10B to “recoup marketing and research development costs” and so probably won’t be coming to an oncologist’s arsenal anytime soon. Oh and its not available over the counter or by prescription in the good ol’ USA 0-; However if you want to give it a try against cancer or even if you plan to travel abroad and wanna pound a couple dozen mystery tacos from “Gaucho’s Street Meat” cart, you can purchase “N” on Amazon. Its sold under the commercial name Antinal.
Either way, Nifuroxazide is going in my catalog of potential, last ditch efforts, should I wind up in precarious straits with this cancer business. I keep a laundry list of these type of things squirreled away. Its full of completely and/or partially baked ideas falling under the category of “at that point why the heck not!?” You can google some of the items on my list if you want…nisin, apricot seeds, essaic tea, pv10, ketonic diet, frankincense, braf and mek1 inhibitors, hemp oil, other, and don’t forget ground meteorite crystals from the planet Ork (nanu nanu).
Speaking of planets here’s Derek’s school report about Mercury. The extra-terrestrial dialogue is astronomically priceless (to me). Where did the kid get the stuff? What a character. Love the delivery and ad-lib! Could not have predicted or conceived of this…
And then there is this other, far grosser planet that Sarah shared with me last week. Prepare to barf in your mouth if you haven’t already seen this…
Am outing my wife here and may pay a price later, but it has to be one of the great ironies of life as well as proof in the absolute certainty of a Power Greater than myself, that Sarah is obsessed with pimples. Like addicted-obsessed is she. Its true. If given the choice to go to an exotic, month long, far away vacation mecca OR spend 2 minutes popping an elephant baby like in the video, she’d pick the latter- all day long.
Growing up I thought that what I looked like, wore, or had or didn’t have growing on my face was most important. This led to hitting the tanning bed and more than likely my current circumstances. Meanwhile, in the end, I married someone who, un-unbeknownst for awhile, would have enjoyed squirting every single one of those adolescent whiteheads onto the mirror. Later tonight she may, in fact, fall into in a deep REM state and dream about Mt. Saint Helen erupting on my forehead. Who knew or could have predicted that trajectory? That’s irony dog.
Finally there this “amazement” from last weekend. Connor’s team crushed the competition in his President’s Day tournament. In six games they out shot the other teams by @ 150 pucks (that’s a lot of rubber), scored over 50 goals and only let in 1, and, though there was plenty of drama and nail biting, generally used their opponents as chew toys. Sounds like I’m bragging and I am, profusely and unabashedly…but the cool part about it is how far they have come since the beginning of the season. Just a few months ago, the team was struggling. Yet to a boy (and one girl) everybody worked extremely hard and improved exponentially. It wasn’t always obvious this was happening. But now the proof is in the teams that beat or tied them at the beginning of the year are having trouble matching up, seemingly over night.
So congrats Connor! There is no more enjoyable thing in the world for me than to watch you and your brother “get after it” on the ice. Amazing.
And for me, perhaps cuz I’m a little nuts or something I dunno, this is the thread that ties these seemingly disparate things together tonight. Amazing, sometimes hard in places, tough even, but interesting nevertheless, often pointing to an unexpected, ironic and funny, incredible, big, and un-scripted (at least by me) life.
“Once in a while you get shown the light in the strangest of places if you look at it right.”
-“Scarlet Begonias” composed and written by Jerry Garcia and Robert Hunter
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.
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!
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.’
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:
Some interesting news this week regarding melanoma and weed…okay, actually, this is a little bit of false advertising…I know-I know because like I live in Colorado, and I think Jerry Garcia should have run for president (dunno maybe he still could, might be better, cryogenics or Randal Koene save us), and like, um, I live in Colorado (oh wait I said that already, ahuh, ahuh), that you thought I was talking about the art supplies, the sticky icky, the wacky tobacky, the weed man, Jeff Spicoli’s perpetual homework assignment from Mr. Hand man.
The news was actually regarding melanoma and seaweed; or more specifically a sugar called L-fucose which is found in seaweed (especially) brown kelp, mushrooms and some seeds. L-fucose was demonstrated to slow down cell metastasis (division) and spread in melanoma cells (Melanoma and L-fucose). I’ll likely be adding more kelp to the rotation in the pantry; or, maybe next time in the area, I’ll go for a swim at Downtown Aquarium in Denver and do some grazing at the bottom of the tank. That won’t scare any kids off or anything.
Of-course these results with seaweed and melanoma were demonstrated in mice; who knows if that will translate into positive results for humans. To verify that we will likely have to wait ten years and for a major pharmaceutical company to spend a billion dollars on research and development and for the FDA to approve…unless of-course you are Jimmy Carter and/or a possible member of the american aristocracy and little things like FDA approvals do not necessarily apply to you.
In the last six months he announced that he had melanoma and it had spread to various parts of his body, including his brain. In turn, it was noted that he would be receiving gamma knife and Keytruda.
It’s the Keytruda part that got lodged under my craw, a little.
Keytruda is not yet FDA approved for first line treatment for patients diagnosed with advanced, Stage IV melanoma. They are working on that and it should happen soon, but not yet. Keytruda is only approved as a second line treatment. In other words its supposed to be given to people only after they have received other interventions such as yervoy or chemotherapy first. If and when they don’t respond, then they are allowed to get it. That’s not just a nice-to-have, its the law. Wonder what any of those families who have ever petitioned the pharmaceutical companies and/or the FDA to get a medicine before approved (and were denied) for themselves or their loved ones would say?
Okay, this is may be unfair. Dunno. Dunno the whole story. These are things conspiracies are made. That’s always-always-always possible.
For the record, I have nothing against former President Carter. Think he’s in a good place, as elder statesman, to make truthful statements in the media and he certainly has availed himself of this…referring here to his recent quip about US politics becoming an oligarchy controlled by private interest groups and unlimited political bribery (Carter and Oligarchy). Probably some truth to that.
And its cool how much he appears to be doing with his charity and humanitarian work in the world, and has been for a long time. Probably has done more in a few hours more than I will ever do in a lifetime. Don’t know what he’s had to put up with or go through to accomplish this, never walked in his shoes.
How did he get Keytruda before FDA approval? Did he receive yervoy or chemo first? Or was there a special dispensation? If the answer is yes does this maybe seem a little inconsistent or, perhaps, oligarchical. Ish?
It occurred to me after getting a little hot under the collar that the reality to cut it out.
In case I hadn’t noticed lately, I’m not the alpha and omega of the universe. I don’t know all the rhymes and reasons for why things roll they way they do. I mean really Jerry, why did you have to die in 1995, four years after I got sober and was still too crazy to once again enjoy your music? And why is there only one word for the word ‘thesaurus’ or ‘abbreviation’ such a long word? Why does sour cream have an expiration date? Why doesn’t Tarzan have a beard? Why don’t fish get cramps after eating? These are mysteries I will never be able to solve. I could try but they might, in turn, only create useless and futile conspiracy theories.
Finally, I will take solace in knowing that none of this really matters anyway. In case you didn’t know the world ended last year. In some kind of bizarre, mass Jacob’s Ladder scenario, we haven’t realized it yet.
Here’s proof that Nostradamus was right, that the world did end last year, as heralded by the release Zombeavers trailer in 2014.
Had an endoscopy on Thursday due to acute-bordering-on-chronic abdominal pain. When I woke from general anesthesia I met with the doctor and he let me know that I was the proud Poppa of inflammation in my stomach and a bouncing baby ulcer. Should have known better and been expecting this surprise- namely because I wasn’t expecting this surprise.
This is one of the near constant lessons of the entire experience, something along the lines of “just when you thought it was safe to go back in the water…” There are so many twists and turns. Whenever I’m convinced that I know what the next turn is going to be, there’s a twist in the turn. Prior to the procedure I was pretty certain that the issue was going to be gallstones. Those still may be in play, more tests are needed. But for now we need to address the ulcer.
Needless to say, my reaction to the news was crappy. Like epic crappy.
“Normally,” the doctor said, “ulcerations in the stomach are pink. You’re particular ulcer, Mr. Fay, is pigmented and due to your medical history this could be melanoma.” That was all I needed to hear. Felt like I was pinned to the bed. Next came my typical reaction to this sort of news. I don’t cry or talk or whatever. I get mad. And I was hurricane Katrina mad.
Now, we don’t know if it is a melanoma ulceration. Won’t have biopsy for another couple of days. What’s more, previous non cancerous ulcers in my gut have been pigmented. So there is hope and reason to believe that this one will be the same. Even if it is not something we want, we aren’t talking hundreds of tumors. There may be more steps we can take. But I wasn’t having any of that puerile hope stuff.
I know part of it is I am exhausted. Tired of butt kicking. Didn’t eat for 4 days last week. Can’t enjoy food – even my crappy sugar free, non-bacon and juicy burger eating, vegetarian diet, such as it is. Tired of trying to maintain some semblance of normalcy. It’s a lot of pressure to be working, being a dad, hitting all these appointments, trying to be positive along with kind, patient, helpful yeah yeah yeah… I guess these kinds reactions are to be expected.
But, got to say I’m sick of that too. Maybe more sick of the sucky attitude than anything else.
The reason I’m bringing it up is because I woke up Friday morning and realized I had to at least try (emphasis on try) to snap out of it. That meant getting up a half hour early in the morning and spending some quiet time and attempting (emphasis on attempting) to get myself right. It meant trying to attempt (equal emphasis on both trying and attempting) to be helpful to somebody even when I don’t feel like it. None of that makes sense to me.
But I can tell you, three days later, it works. I don’t know how or why but it does. Its better. I feel a little better. Have some acceptance going and realized that it doesn’t matter what happens if I insist on an ulcerous outlook. The attitude is what will make or break whatever comes next and today I choose to believe that whatever comes next is good, thy will be done.
Dunno where these dorky references to “old” movies arise but Bill Murray has taken up a chant in my head.
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.’