20 August 2017

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Greetings and Salutations my friends and family!

Wanted to share a general update… inviting you to follow me on Face Book, Instagram and Twitter (Steven Max Stern) as that is where I post my daily goings on… 

So what’s been going on apart from all that seemingly fun stuff I’ve been doing? 😉

Most recently we have been working on preventing further deterioration in my left eye. Macular Degenerative Disease as they call it. This requires shots of Avastin directly into the eyeball.  I know, fun! Actually, for most part, it’s not as bad as it sounds. I’d prefer to do other things with my time of course. I have my 5th shot (a double dose cuz i’m an animal) this coming month, and 6th the following month on the 17ths. So far it seems to be helping reduce the fluid and delaying the onset of other issues.

So, right eye, is as is. 90% blurry. Left eye, blurry but holding. I’m functional let’s call it!

Jaw is continuing to heal itself and the bone is coming out. This/my doctor (one of 5) is very happy as it is as he’d want it to be in a perfect world. Just checked it this past week and it should be coming out any day now or so-ish. Hopefully my teeth stay in, the bone pops out from where it’s coming up inside my lower left gumline and is causing them to teeter. However, the doctor and dentist who cleaned my teeth today, both say the teeth seem like they are holding their own. Word. I continue to take an antibiotic every day to prevent bone infections until we’re all clear.

Brain tumors are considered “inactive” and nothing new as of last MRI. Next MRI is this coming early Sept.

Body tumors are considered in ‘controlled disease’ status as of last CT. Next CT is this coming early Sept.

As systemic treatment (and also keeping tumors in the brain at bay which is amazing break-thru in this field of treatments) – I am still on the Alecensa pill, chemo treatment 2x a day, starting 15 months now… … … … … … It has its issues, as do most things, but I am pushing it to the limit along with everything else I am trying to do (within some reason of course!)… … … … … …

My primary doctor (Oncologist) and I meet middle of September to review everything and see what’s next… which i continue to focus on.. health, happiness and wealth.

In the meantime, much love to you all and safe journeys along your path.

1 ❤

Steven – Stevie – sms

 

 

 

14 June 2017

Hi Everyone!  Wanted to post an update on current status as I have just finished 2 weeks of pokeyprodies and assorted other tests and doctor visits 🙂

1) CT – shows body is stable, report quotes summary, “stable disease”.  Next test cycle is September.

2) MRI – we are waiting on report but believe it to be clear as before.  Next test cycle is September.

3) Jaw Necrosis – healing but pushing out some teeth as the bone comes out. have to wait and see.  on daily antibiotics, with no break, in order to assist with healing.  Ongoing monitoring.

4) Eyes –  right same, 90% gone. left, 3rd avastin injection to prevent retinal detachment over time. seems to be having some effect on stopping the decay.  too soon to tell.  Next test cycle is August.

5) this is an AMAZING report and my Doctors are all very happy to say the least and impressed that i’m actually like this and, a ‘song writer’ and ‘musician’ … stranger things have happened in life for sure… but i must say, this is a miracle on top of miracles on top of miracles… amen.

Friday is my 48th Bday! (June 16, 1969).

Saturday night i fly out and will be joining my band on the bus, The Wailers.  From June 20th thru July 24th – I will be on tour, in Miami, recording in studios, writing more songs, making documentaries, videos, meeting more amazing musicians !!!  and this is just the start.  In mid-August, you will note, we will be touring in Europe (UK, Netherlands, Italy, Germany…)!!!

https://www.thewailers.net/tour/  

Lots of pics, videos and other assorted fun things coming soon!!!

That is it for now.  I think a solid and positive note to sum it all up for all ya’ll.

Keep smiling, keep shining and never stop dreaming.

Lots of love and positive vibrations to you all!!!

Steven

10 May 2017

Wanted to share the latest regarding my medical status along with lots of links to magical things going on!!!

  • Overall my body and brain are under “control”.  This means that the tumors are sitting still, maybe shrinking a little bit and/or just in a static mode.  This is very awesome.  I’d like to see the shrinking but I won’t complain.  We are on month 10 of the biological treatment/drug Alecensa.
  • I am still losing sight over time, right eye is “stable” – the nerve is about 90% dead and not supposed to regenerate.  This means the right eye is about 90% blurry and fairly useless.  My left eye is receiving Avastin injections in order to save it from Ocular Degeneration, in other words, my left eye feels old and is just tweeking out now.  The shots are to prevent/slow down the deterioration and stop retinal detachment.  We will ‘see’ what happens in time.
  • I am on antibiotics for my jaw, every day, on a 180 day cycle.  My jaw bone (lower left) had a necrosis due to the XGEVA shots to strengthen my bones from the tumors.  My jaw is healing and a bone is actually coming out on the inside of my lower left jaw, like a BIG wisdom tooth.  This is amazing!  It also might push out 3 or 4 of my teeth.  This is way more preferable than having part of my lower left jaw removed.
  •  Next rounds of MRI, CTs and doctor consultations are between June 1 and June 15.  My next cycle with my eyes will be around August.

In the meantime, I get on an airplane this Friday morning (the 12th) to go back to Miami to go on tour with The Wailers.  I am a part of their family now after all! 🙂  Let the new chapter, new book begin!!!

So here are some links to some of the magic I am starting to get into!!!

1Love 1Heart ❤  -sms

http://www.thewailers.net

http://www.bookingentertainment.com

http://www.badlions.com

Eli Marcus IDC International Radio:

Article on The Wailers website:
https://www.thewailers.net/the-accidental-miracle

Book:
http://www.ourboox.com/books/concerned-about-the-human-race/

Video:
https://m.facebook.com/story.php?story_fbid=10155940065994992&id=740679991

FaceBook:
https://www.facebook.com/SpaceClown

LinkedIn:
http://il.linkedin.com/pub/steven-max-stern/0/186/489/

Update – 23 March 2017

Hi All,
Just a brief update after latest rounds over the last couple of weeks.  Approaching 2.4 years since Nov 27 2014.
  • Into 9 months of systemic treatment with Alecensa, body tumors remain more or less stable.  Next CT in 3 months.
  • Brain MRI is good. Dr sees nothing new! Next MRI in 3 months
  • Left eye is accumulating liquids again and losing sight. Will start 2 rounds of Avastin injections to try control this, and track after etc. with typical follow ups.  Right eye is the same since last year, impaired, blurry but stable.
  • Jaw is still requiring antibiotics on and off, just went on again past week for 90-180 days.
Doing ok considering! 🙂
 
I didn’t get into AGT this time around.  Oh well!  Had a great time in NYC anyway!!!
 
Also, I was told and encouraged by many of my friends and family members, a lot of them you, readers of my blog, that I should write a book.
 
So I did!  There are a few chapters missing, by design, with title only, leaving some things to the imagination.  There is more to come in some way, shape and form.  
 
So you are getting it first (see link below), done on a simple book publishing platform.  I hope you enjoy!
 
Love,
Steven
 

Hello2017

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Our whole lives, we are told to dream, and when doing so, to dream big. True! Amidst all the craziness, I found something to focus on for 2017… So, hello New York!

Look forward to sharing more in the coming days…

With lots of love, health, happiness and wealth for the new year to all ya’ll!!!

2Years

healthwealth

It’s been awhile since my last post and I wanted to give a brief status update, especially as this month, Nov 27 will be 2 years since my diagnosis.

You may recall that I started systemic treatment just into the New Year for 2016. If you don’t, it’s true, I did! Those little pink pills, twice a day. Biological chemo. They were lending a helping hand for the first couple of months, packed a punch when taking them and at about 3 ½ months into it started being toxic / or my body rejected them / or they stopped working / and the cancer started spreading again.

Whatever it is, around March thru June I crashed pretty hard. It was a rough period of time which haunts me (usually from a distance), yet is another thing that encourages me to appreciate things in life a bit more profoundly.

So towards the end of June I stopped taking my little pink friends and switched to little white ones. They are a newer biological medication (Alectinib) which has been much more gracious so far.

In technical terms, latest results show a reversal of the previous trend of progressions seen in the April/May cycle of tests:

  • Body CT – shows slight tumor recession in some areas and overall stability
  • Brain MRI – shows 2 newer tumors have disappeared
  • Left eye checks – show the newer tumors to be inactive (their term for ‘dead’)
  • Right eye checks – remains unchanged, vision expected to remain ‘impaired’
  • Jaw – the antibiotic, Doxylin, the stuff they give to people exposed to Anthrax, and kids with Zits among other things. In my case, for 90 days to treat a bacterial infection on the lower left side of my jaw triggered by a ‘drug induced’ bone necrosis (i.e. dead bone). It’s a possible side effect of monthly chemical treatments to strengthen bone. Seems better and hopefully can stay off antibiotics and avoid any surgeries.

All of this will be rechecked and revisited over the next weeks, month(s), year(s)…

I am also happy to say I managed to get back into the pool in August after a long 4 month hiatus. I started by walking in the water about 20 minutes several times a week and have built up to a 1-2k swim.

Issues and pains aside, considering everything, I am doing remarkably well and feel pretty good! Could be better, but could be much worse AND I get to eat tasty food again. Never underestimate this.

With much Love,

Steven

onDeathAndLife

destiny

A difficult topic for sure, but I guess it’s something we all eventually think about.  Every human civilization has pondered this and come up with a diverse and fascinating myriad of possibilities and permutations on the subject.  Interestingly, people have asked me what I think happens when we die, certainly more since before my little problem.  That’s one of the deepest questions I believe driving humanity.  I really really don’t know, and believe me, I’ve given it some hard thought.

I don’t know if anyone really knows.  Many people say they know, and think they know, but always seems to me that hardcore evidence is lacking, and we fall back on what we’ve grown to believe, or would like to believe, with a lot of faith.

I’d like to believe one idea (there are many) that comes to my mind:

We are all part of a huge infinite canvas and painting we can call the universe; perhaps with multiple embedded and phased twists and turns which we can’t see and wouldn’t even guess exist.  In this way we are all connected, everyone of us, even those we don’t know, or like, more than we can even imagine, particles thinly spread, intertwined and mixed together.

And this is so, everywhere, especially at the outer edges of infinity where matter and antimatter collide with tremendous forces that we can’t begin to comprehend, destroying things that exist and ushering in creation.

Yet it is subtle in our minds, on the tips of our tongues, this faint recollection, forgotten almost as quickly as it appears, that we are all part of something bigger.

We all know we’re going to die.  We don’t typically know from what, and even more so, when.

Until proven otherwise, I believe Death comes after everyone, equally.  Doesn’t care about statistics or your age, your race, your financial status, mental stability, physical condition, location, connections, car, shoe brand…  I am not unique, we have all seen and experienced some variation of this in our lives (or will).

Sadly, two of my brothers and my mother passed away at earlier points in our lives.  My brother Michael at 36, my Mom, Maureen, at 71 and my brother Bryan at 50.  A weird heart thing, cancer thing and another cancer thing.

Whatever the case may be, for me it is simple: It is always too soon when you lose those you love and care about or those who have in some way entered our hearts and caressed our souls – the reason doesn’t really matter, albeit some being more tragic than others. 

It is painful, it is sad, it hurts and it doesn’t seem right along with so many emotions and feelings all jumbled so that it often makes no sense.  Yet their presence and passing is to be celebrated, mourned and in that, remembered.  We all know this and have felt it (or will).

So what happens?

I believe we just continue to spread back to where we came from, into this beautiful complex and insanely incomprehensible ever growing canvas, remaining as connected as we have always been to this universe and to each other – with our loved ones and friends, as they with us.

Yet it is subtle in our minds, on the tips of our tongues, this faint recollection, forgotten almost as quickly as it appears, that we are all eternally a part of something bigger.

We are still together.

—Infinite love and peace—


“We are here to laugh at the odds and to live our lives so well, that death will tremble to take us.”   -Charles Bukowski

 

 

beingAnOutlier

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Out·li·er

ˈ/outˌlīər/  —  noun

“In statistics an outlier is a piece of data that is far from the rest; think of a graph with dots, where most dots are clustered together in the middle, but one dot, the outlier, is at the top. Think of an outlier as an outsider. An outlier refers to anything that strays from, or isn’t part of, the norm.”

a person or thing situated away or detached from the main body or system.

a person or thing differing from all other members of a particular group or set.

___________________________________________________

Around the fourth month, after my initial diagnosis, I had a meeting with my Oncologist.  You always have meetings with your doctors when you are in this boat, and the doctors can pile up quickly for so many reasons.  These meetings are preceded by all sorts of tests which vary based on your situation, condition, what they are looking for/at this time, etc. etc.  These meetings are also followed by additional tests and, hopefully never or rarely, some type of procedure.  The cycle repeats itself almost every 2-3 months for me, at different stages, so it is essentially all the time and ongoing – a full time job.  This includes lots of paperwork.  None of us ever manage to get rid of the fucking paperwork!  I bet you have a whole stack of it (or more!) somewhere just sitting there staring you in the face every time you pass by.  It’s not true that you only have to pay your taxes and die, you have to do all this damn paperwork along the way too!

In my case the regiment includes (but is not limited to), for my eyes, an OCT, Eyeball Ultrasound, Field Vision Test and Eyeball Pictures followed by meetings with a Neuro-ophthalmologist and an Eye Tumor Specialist.  They all must shine bright lights into your eyes after dilating them.  It’s the first thing they do, pretty much always.  Along with a solid loaf of Christmas cake infused with candied fruit, I despise this.  I have light sensitive eyes and it’s always bugged me, since childhood.  “Just saying”.

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For the head/brain it is an MRI checking the existing tumors in the left hemisphere and the larger one in the nerve on the right side and looking for changes, new ones etc.. This is followed by a meeting with a Neurosurgeon.  

For the primary cancer and metastasized areas from the neck down to the pelvis, it is a body CT, Chest Xray, EKG and comprehensive Blood Test.  It is with these, along with all the previous things, results and reports, that I sit in a meeting with said Oncologist whom I started to mention before slightly digressing.

Tests at the time showed that the pleural effusion was stable (that’s the liquid accumulating in the lung cavity) and had not returned much since initial and secondary draining.  The other very good thing was that the cancer and metastatic tumors were mostly stable and not moving.  “That is highly illogical”.  Looking back on it, magical, as it is now.

As we were preparing to start chemotherapy, my doctor shared with me his thoughts to hold off on it.  Given the status, he preferred and suggested not to begin at that time and wait to see how things develop.  When you have stage 4 cancer, this is an option.  I understand that they would pretty much never do this with any other diagnosis and not all doctors would consider doing it anyway.  My doctor asked me out of interest what had I been doing since November as this is an uncommon situation.   

I didn’t know quite how to answer him and started with all the logistics of being a patient, however, as we started to discuss it, I told him about my choices: I told him about a diet I had started using (he doesn’t believe in diets, per se, but highly encourages eating tasty food!), that I tried to exercise almost daily with swimming / walking (at least thinking about it and often doing it), that I continued with some routine as best as I could, the vitamins that I was taking, that I went to therapists, that I hoped for the best, that I started using cannabis – at which point he stopped me and corrected me with a wry smile and his finger waving, “… ahh, ahh, ahh … you continue to use cannabis …”.

cannabis

We had a good laugh, yes doctor you are correct, I am guilty as charged!  It is one of the better medical tools in my kit as it is for many people out there.  Humor along with a positive attitude even when you feel like shit goes a long way and is something I add to this list of things I choose to do.  I laughed at myself as much as possible, the surrealness of the situation, and I still do.  I have to.  For an instant, my heart and soul explode every time I see paperwork with ‘NSCLC-4’ written or scribbled on it.

A year later, the situation is different and the cancer has certainly progressed, albeit slowly, as it is in my head and eyes too, yet controlled.  We had started to look at chemotherapy and I find myself once again going off in a different direction, using some newer targeted therapy.  Rarely do things go as planned.  Plans are put in place so we can change direction and react quickly as things go awry, only to make updated plans.

The truth is, we don’t know why it stopped or why it’s behaving as it does, and we will probably never know.  It is a combination of everything.  Even with the changes, my doctor told me that I’m not on the charts, in a good way.  I plan to stay the course, always, in some way.  

Apart from luck, I’d like to believe that this is because of the things I choose to do, when I can, and over which I feel that I have control.  With a positive attitude as often as possible, to focus on that which I feel good about and with which I feel better.  This includes not being too pigheaded and open minded enough to change and adapt.  It has become my life’s focus and I find that if I listen to, trust and follow my instincts, things are better.

We are always part of some statistic, whether we like it or not, so to me it’s preferable to choose statistic(s) you want to be part of, and which not.  Mine is to survive with meaning and purpose as long as possible, despite the odds.  I’d like to also spread some hope, love and inspiration along the way.

For me, it’s health, happiness and wealth, in that order.

I understand that something is not normal, and in this case it is a GOOD thing.  We don’t always want to be normal and yes, there are things for which we DON’T want to be outliers.  However, in my case, looking back on that day, more than ever now I spend my time trying to not be normal and on being an outlier.  My life depends on it.  

Easier said than done, I know…  However, ask yourself, what does it mean to be an outlier?  To go out of my way to push myself beyond the normal statistic in anything I do?  Sometimes it’s as simple as just a smile or a thank you.  Most other times it’s a bit more complicated and beyond, but doable.  I worked in corporate, as a father, as a husband, as a citizen on this planet.  In my own startup.  For all of us, it starts over every day when we open our eyes.  Right there you are an outlier!  We are actually all outliers inhabiting a planet speeding through a solar system, speeding though a galaxy, speeding through a universe, speeding through things we are only beginning to discover and understand.  Magical.

Without a doubt, I am lucky, and along with the tremendous support and love from friends and family around the world, I strive daily to be an outlier in everything I choose to do.  We all can.

“The future’s uncertain, and the end is always near…”

___________________________________________________

peace, love and happiness   –sms–

eatTastyFood

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It has been longer than I intended since my last post and I wanted to provide an update on some of the goings on and where I am at.  The days have been long and filled with all sorts of human trials and tribulations, yet the overall time has passed quickly.  Funny how time works like that.  Evidence is mounting to support Einstein and distortion of space and time.  Around black hole collisions we are now able to measure this, like some sort of sixth sense, I believe we realized this deep down inside long ago.

So where did I leave off… I entered the experimental program I mentioned in my last post. This started with a battery of tests, lots of pokey-proddies, including a biopsy of a tumor from the lung area.  They get there with a needle and a live CT.  Very interesting but I will spare you the details.  What they found from the biopsy is that I have one of the three mutations for lung cancer treated today with existing targeted therapy (what most people call biological treatment).  I have the ALK mutation after all, and this kicked me out of the experiment and starting with traditional chemotherapy.  When first diagnosed in Nov 2014, we tested a few times for mutations from the lung liquids, not a tumor, and it was a weak positive, a negative and an undefined. For the past two and a half months, I have been taking cute pink pills twice a day.  It’s called Xalkori.  Feel free to look it up.

xalkori

This is what they call 1st line systemic treatment for the primary and metastasized tumors.  This is cutting edge emerging treatment in cancer.  Like traditional chemotherapy, it has side effects, however, typically milder, and is easier to administer. It is preferable as the initial treatment path if possible. Like all cancers, you check the effectiveness the same way:  how do you feel and more importantly, what does the next CT/MRI show happening inside (remember scanxiety).  Lots of blood tests and EKGs along the way. The CT test cycle is about every 2.5 months and we just reviewed the latest from March 1 with my Dr.

Still waiting on the official pathology report which compares the last CT to the most recent one, however, from what we can see we believe that the pills are having some positive effect on adrenal, lymph and bone tumors, still can’t tell in the lungs or surrounding cavities – meaning we think we see some shrinking.  This is very good!  Some side effects among them are nausea, occasional vomiting, aches and pains – but maybe it’s just old age settling in.

The major side effect we believe and that we are watching is liquid accumulation in my plural cavities (lung chambers).  I will have follow up chest xrays to monitor in 2 and 4 weeks as it may require draining. We’ll see.

As for my brain.  The latest MRI on my head shows that there is no new growth, existing tumors are unchanged and stable.  More good stuff. This is something we monitor every couple of months.  Part of this includes repeated eye tests, both on the right side to see if there is improvement with the nerve damage and vision (which to date there isn’t), and on the left eye where we are looking to control a tumor on the eyeball with the same Xalkori pill.  Apparently, the eyeball can be treated and is not subject to the blood/brain barrier I’ve mentioned before.  Upcoming eye tests next week and then I’ll know what the eye tumor specialist thinks.

So that’s the latest of where I am in my treatment path. I continue to do those things that feel good or ‘help’ along the way and avoid things which don’t. Sometimes I get them confused.  Thankfully I’m clear headed enough to also change my mind and behavior to match the twists and turns.

As my doctor has said repeatedly, “eat tasty food”.

And so shall it be!

Wishing you much love, light and life.

plh