Scanxiety

Had MRI and got results yesterday at the University of Colorado.  Great news! Tumors in brain are stable to improved.

We spent some time examining grey globs in my pea sized brain. Basically, nothing has changed in the last 3.5 years since they found them. Historically, they expect a fourth of the tumors to not respond to the treatment and require re-treatment and/or other measures (like surgery). With the exception of 1 tumor, all 98 of mine have responded so far. That’s basically a 99% response.

One study posted on NCBI looked at 51 patients over a 10 year period treated with GammaKnife stereotactic radiosurgery (GKSRS). It examined local and distant brain failure rates, overall survival, and likelihood of neurologic death.  Median survival time for the entire cohort was only 5.9 months. Local control rates at 1 and 2 years were 57% and 34%, respectively. Distant brain failure rates at 1 and 2 years were 58% and 75%. Fifty-three percent of patients ultimately died of neurologic death. On multivariate analysis, patients with extracranial disease (eg spread to distant organs or other areas) had worse overall survival than patients without evidence of ECD (extracranial disease).

Another study from 2014 examined morbidity of people with stage IV melanoma. Median overall survival was 5.3 months. Death probability of a patient with brain metastases was twice that of a patient with digestive metastasis, about 7 times higher than that of a patient with lung metastasis and 12 times higher than the death risk of a patient with extra-regional lymph nodes or subcutaneous metastasis.

Not sure what to say about ‘dem numbers…I’ve had brain, digestive, lung AND lymph node metastasis…thankfully, this is one of the few areas in my life where not living up to expectations is a resoundingly positive thing.

I also asked the PA if those monochromatic looking dudes in my head were metabolically dead and the answer was…inconclusive. Short of cracking my dome open and biopsying the best guess is that they are either “deet” or the  gamma knife treatments scrambled the DNA enough that the cells are no longer dividing. We dunno.

What I do know is that I can, hopefully, lay off the hypochondria for a few months, at least until the next scan. I think I have gotten more relaxed (easy to say now 24 hours later, but I do believe this is true) about the process. I was sawing serious logs during the 30 minutes in the tube yesterday, despite the rather alluring siren calls/whale mating shrill broadcast with deafening surround sound inside the MRI tunnel. But its almost impossible to avoid a certain amount of manic and panicked thinking prior to the day.

Somebody on FB recently referred to this as “SCANXIETY.” I like that. Its the beat I’m pretty much dancing to, starting @ a week prior to the big show. Benign, normal, everyday aches and pains become potential, life threatening indications. Anything  from a headache, eye twitch, or head rush from getting up too fast…on and on…whisper to me their deadly symptoms.

What can I do about them? Well…

  1. Talking helps. Lately this just saying to Sarah, “Thinking again. Got this headache and…” She is usually quick to remind I’ve had headaches before 0-;
  2. Pray. Pretty much, a lot. Not sure why that works but it does.
  3. Practice acceptance; attempting to remember that “at the end of day” I don’t have power over any of it anyhow/anyway. I can be miserable or get busy getting busy with whatever is in front of me.
  4. Sometimes I get pissed and sometimes I act out. I try to correct it as soon as possible and move on. As I’ve said before, have not  graduated to super hero. If sometime in the future I claim such a thing, just nod and wave, nod and wave.
  5. Work. I have the “luxury” here of perspective. While work is important, kinda, its if nothing else, full of worthwhile distractions. A Green Beret once told me, “Stress? This is not stress man. Stress is when people are shooting at you.” While I think the human brain is capable of making a “TPS” report as relatively stress worthy as taking fire from a gang of AK-47s, cancer, or whatever, I can relate more and more to what he was telling me today. There are no big deals except when I want big deals.
  6. Work out, everyday. Calms the brainwaves and smooths the turbulence between my ears.
  7. Boys. Hockey. Basement. Hanging out. Drive way. Footballs. Trampoline. Catch. Whatever we do – most of the time 0-; – is righteous.
  8. Sleep. Ah! Sleep.
  9. Elsa sleeping on our couch. The puppy dog is finally down. All praise Jesus.
  10. Mindless television…speaking of which iZombie is calling from the next room. Or should I feel guilty about not working on writing, reading something useful, or a thousand other more noble and productive callings…um…no…

Peace out!

PS. C-man’s team won a second tournament last weekend- their league championship. They are now 19-1 in the last 20 games. Next up is the state tourni. Love this dude.

After winning CCYWHL tournament

After winning CCYWHL tournament

Facebook Comments

String together

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.

Rampage win Pres Day Tournament

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

Facebook Comments

Importance of regularly changing mind

So…was in ER Saturday morning after @ the 25th or 30th episode of all night stomach cramps and vomiting. Joy! Around 8 am that morning Sarah gently nudged me in the right direction and I was “glad” I howled my way to a hospital bed. That being said this situation can be cosmically frustrating. As mentioned in my last post I thought I was figuring out the problem (eg gluten) but it was back to the drawing board Friday night. No gluten and yet I still had an attack, and that kinda-totally-sucked-completely.

Can’t – well I prob could but won’t – count the doctor visits, specialists, blood tests, scans, procedures…etc…etc…etc invested in solving ‘Leland Fay and the Mystery of the Episodic Barfing Adventures.’ It’s one of those situations where, if you had told me a few years ago I was going to get to experience nearly a month (in toto) of grueling 1:1 sessions with my pal the toilet bowl I don’t know how willing I would have been to submit.

What a minute, that’s not true. I mean what’s the alternative? Maybe its that I’m too stupid or Irish or ‘something’ to give up. Dunno. I’m too stupid to answer the question tonight. But I do know that I don’t have to stay in the dumps about this situation…that is if I choose to get out of it and change my thinking or attitude…but…how?

That’s what I’m thinking about tonight. How do you crawl out from under tough situations like these? I think everyone knows that staying low is not a great idea, on so many levels, especially if you have a tough medical condition. You know you gotta be positive and all that happy, um, talk…and nobody wants to wallow in it; and in this case “it” rhymes with a word that sounds like goop…um, no wait a minute, I mean sit, the it rhymes with sit.

The importance of changing attitudes/minds has surfaced a few times over the last few days. I was reminded after reading a Facebook friend’s recent post. She was struggling with the grinding treatments/scans and, more than anything, the fear. I could relate to that condition.

When I got booted from the clinical trial 3 years ago and, simultaneously, doctors discovered a redonkeylous number of brain tumors, and a medical professional advised us to shop for hospice, I visited a dark place. It wasn’t – crazy as this sounds – the darkest (that’s a story for other days). Regardless, it was hard to believe in anything for awhile; though I did come out eventually.

The process was/is never easy. Burning bushes resemble soppy messes. More than anything, the experience always directs me back to a lesson someone taught me years ago. If I’m having trouble believing in <whatever>, I can attempt to become willing to believe in <whatever>. Willingness to believe is, most of the time, all it takes to come to believe.

The other trick is gratitude.

However there’s a “trick” with the trick. When I’m not feeling particularly grateful, then gratitude has a tendency to piss me off…especially when some unfortunate soul suggests that I might want to attempt it (so cancer/melanohomies if you are struggling tonight, um, I would suggest you try some gratitude, but won’t, if you know what I mean 0-;). 

Returning to the scene of the crime, last Saturday morning I did manage to squeeze some belief as well as a little gratitude out of those thin, pale white hospital sheets. Namely as I lay there, the thought occurred to me that, sucky as it was, at least it was me and not the Sarah or the boys.

This hit particularly close to home as we were at the ER for Derek just 2 days before, after he fractured his arm playing hockey. Tough as that little guy is, he was crying his eyes out and that broke our hearts.

And so I was and am grateful tonight that we are not trying to solve “Derek Fay and the Mystery of Episodic Barfing Adventures.”

In turn, I’m at least willing to believe that my mystery will eventually be solved too. Let’s hope that’s a good start.

Image result for burning bush picture

Facebook Comments

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.

Facebook Comments

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

 

 

Facebook Comments

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.

 

Facebook Comments

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.’
Facebook Comments

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

Facebook Comments

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

Facebook Comments

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

Facebook Comments