Cancer “progress”, Broken Bones, Potential COVID-19 Novel Defenses and the Grateful Dead Man!

Cancer Progression

There are certain words that seem totally incongruous, especially when it comes to cancer. “Full neck dissection” is one word salad I could never quite wrap my brain – what am I a bullfrog or nurse shark splayed and pinned on a formaldehyde soaked table in 8th grade biology class? Cancer “Progression” is another nonsensical one IMO. 99% of the time progress has always had a positive connotation but not when it comes to the “C” word.

My cancer progressed on a massive scale last January. Yes! Ain’t that sweet! Oh wait, yeah, no, not so much. The situation blew in fact. Maybe that would have been more appropriate sounding way for the Doctor to break the news.

I am sorry to tell you Mr. Fay but your cancer scans blows some hairy chunks of spew.

It was the worst report we have gotten in quite a while, almost as bad as the results that showed “progress” in lungs, liver, lymph nodes and 98 brain tumors 8 years ago. Imagery showed 20+ new lesions in liver, 20+ in lungs, and some big daddies in my lymph nodes hanging around the aorta and heart.

When I said in my last post that I was experiencing pain, I thought it was related to getting over the gastritis in the hospital and weaning myself off of the steroids. In hindsight, based on the “pain patterns” and locations those areas that lit up the scans like a X-mas tree, the pain was actually a pretty good mapping to the regions with the most “progression.”

By January, it was “Welcome to your new excruciating life.” At 2am I would be thinking somehow I had transformed into a whip spider, suffering the nearly incomprehensible “cruciatus curse” ala Harry Potter “Defense Against the Dark Arts” class.

Crucio!

Not that I know much, but I had been afraid this might happen. I realized when I entered the hospital the previous fall that many of the things they were proposing to fix the gastritis had the potential to be counterproductive from an immune system perspective. But choices were limited. 30-40 pounds of weight loss in 2 months, racking agony, and not eating for a few months was enough. I was cooked. I surrendered to the hospital, the doctors, their pain medicine, whatever treatments proposed, and ice cream sandwiches they had to offer.

I was not sure if this was it.

Fast forward a few months and here we be. As a result of my “progress” we talked to our Doctors, including Doc Hamid in LA. We decided I should triage with some fast acting targeted therapies (Mektovi and Braftovi). The treatments appears to be working. My last scan was decidedly less “blowing chunks worthy.” Whoever has been sneaking into my room at night and whispering “Crucio” seemed to have departed for the time being…though the number of pills for day is ramped up. The rub is with this combo of combos, it usually doesn’t last as a solution for more than 6-12 months. I think the statistically relevant data suggests 11 months. The last time I used this was 2 years ago. It lasted @ 4 months.

There is other ongoing drama involved in the story. I do have a recurrence of gastritis and ulcers, exacerbated by an h.pylori infection along with something called “adrenal fatigue” – the combined result was more daily throwing up, pain, and EXTREME this-one-goes-to-11 exhaustion. Am feeling better the last few weeks. Stay tuned to stay tuned, will soon be rescanning and deciding on the next course of action. I think the appropriate strategy is to try to find a longer term treatment before the current regime fails and, in doing so, keep that present medicine as a failsafe.

Broken Bones

To change subjects, I am going to take this opportunity to brag about my boy Connor. 15 going on awesome! This is an old man thing to say but he is so far ahead of where I was at his age. “Fine young man” comes to mind. I am PROUD! These thoughts bring tears to my eyes on a regular basis.

Kicking butt in school. Faithful at church and at home on his own. A good friend, a strong and patient older brother, teammate and friend, young adult. He is not perfect and has challenges but oh how we love this dude.

And what a great year of hockey! The kid started skating late as hockey players go – 7. That has always been an issue. So he spent last summer working out on his own and working with a skating coach. The goal was a AAA this year. He made it.

What a badass. Look at that stride. The skating was markedly improved and he enjoyed some successes this year. He really enjoyed his teammates (a great group of kids and parents I might add, which is not always the rule in youth hockey), the travel, workouts and the competition. He was even fortunate to be among a few players singled out by a scout for premier league in Canada from the Vancouver Giants. The lead scout was wondering if Conn would like to explore the WHL draft and play in the great white north (beer and doughnuts eh, old time hockey, Eddie Shore). Big thrill eh?

And then, disaster.

On his last trip with team, to Minnesota, he broke the crap out of his leg – bad.

Right leg. Tibia and fibula. Lots of embedded hardware. 2 surgeries. Pain.

Neither Sarah and I were able to tag along on that trip. I was suffering from that exhaustion I mentioned above, barely hanging on to my work life and health. Sarah was traveling with our other boy Derek (also a totally righteous dude) on a trip to Boston for AAA. That was tough. Thank God for Sarah’s brother who was in the area and, between him and his family, performed absolutely yeoman’s service in the care of our pride and joy.

Thank you Daniel. Love you and your family.

Now I should mention that Connor also, in a bid to apparently be like his Dad, experience some rather unique medical developments along the way. After surgery he had something called “compartment syndrome” which is basically uncontrolled swelling in a number of muscle groups in his leg. If gone untreated (with second surgery to make holes in the fascia or basically the bags that surround the muscles – think the repairs for hernia) it can lead in its most advanced stages to amputation.

Then we thought after surgery 2 the nightmare would be over. But for hours post surgery Connor’s pain kept escalating. The nurses injected him with enough narcotics to put down an elephant – an addict’s dream of 1 or 4 doses each of dalaudid, oxycontin, morphine and tramadol. Nothing worked. The treating physician – who was great btw – said he had not seen such a thing in 40 years of practicing medicine. Any parent who has gone through that will know how hard something like that is to witness.

At that point, and I hate to be too dramatic, but Sarah and I were siting there on some stale couch in a nice but bland hospital room, thinking about JOB. “WTF” comes to mind. I wish I could say I was more faithful.

The resolution, thankfully, was to block his sciatic nerve. Amen. If that had not worked we would have had to flight for life, or whatever, up to a special pain clinic in Denver.

So its onto slow recovery, lots of nerve pain, and mental and emotional anguish. We pray that he will make a complete recovery. I was out running today and thinking how much I am looking forward to him blowing up the mountain in front of me, waiting with him and his bro at the turn around asking, “What took you so long old man. 0-; If you are one of us who believe and have benefited from prayer, please pray for him. We want him well!

Novel First Line Defense for Viral Infection?

Look – I thought about not posting this information at all here. I mean I realize my thousands of subscribers (ha!) might turn me in and I could go the way of Jimmy Baker https://www.cbsnews.com/news/jim-bakker-coronavirus-covid-19-fake-cure-televangelist-sued-by-missouri-symptoms-selling-treatment

That is in part why I dropped this section down below. Kind of snuck it in the middle.

I figure my friends know, hopefully, know I would never want to contribute to the fake news statistics.

Let me also clear my throat a second and repeat the disclaimer of this blog:

In case you haven’t guessed yet, I’m not a doctor, I don’t play one on T.V, and I didn’t stay at a Holiday Inn last night. I don’t intend on auditioning or playing the part of a doctor on this website or anywhere else for that matter.  What I do intend on doing is keeping information relevant and related to my experience or research. None of what I write or reference is intended to diagnose, treat, cure, or prevent any disease, condition, infection, virus, etc. Any statements made have not been evaluated by the Food and Drug Administration… or people who played doctors on T.V. or stayed at Holiday Inns last night.

That said here, I would like to offer a potential first line defense against COVID-19.

Here goes …

One advantage of fighting an 8 year cancer battle is I am now pretty good friends with a number of doctors and specialists, having their confidence as well as cell numbers.

One of my doctors the other day pulled me aside to discuss a conversation he had with a naturopath recently, who is a friend of his…as you can imagine an MD and NMD have some pretty interesting and lively conversations.

Anyways, the NMD shared with MD a theory about the use of water treatment chemicals found in camping products. Basically he offered that the same, safe treatment could provide an effective front line defense for viral infections …

Longer story shorter …Doctor kind of laughed at his friend but remembered the discussion when he started coming down with some flu like symptoms a week or so ago. He rifled through his camping supplies, found some drops, and, following directions, tried it. Believe it or not, his symptoms were gone in a few hours. Curious, he then also shared a drink with his sister who has been dealing with a viral infection since last January (Bronchitis). She tried and her symptoms were gone in 24 hours. His son then came down with fever a few days ago, same results, in an hour or so.

My doctor’s suggestion (not direction and he was careful to tell me he did not share with his ‘regular patients’) was for me to get some on hand and, if open minded to the possibilities, try it if I needed to…he is using prophylactically now as part of his practice/daily seeing of patients.

His other point was, if only a placebo- though study of epigenetics in last few years is demonstrating mind actually does and can create physiological changes, so placebo is not as much of a boogie man as used to be.  That said, IMO in the next 10 years we are going to see if a shift away from what has been historically the use of human and animal trials in favor of data analytics/super computing/unprecedented data models that can perform testing without harm and in a fractions of the time.

Even the other day I was pleased to see the announcement of a collaborative measure between industry, gov and universities to point the world’s largest super computers at the covid-19.

https://www.whitehouse.gov/briefings-statements/white-house-announces-new-partnership-unleash-u-s-supercomputing-resources-fight-covid-19/

My guess is that with our best minds, research and collaborative efforts pointed at this problem space, there will be lots of “side,” profound benefits occurring in the same manner that massive scientific efforts like the space shuttle program led to host of new ideas, products and inventions.

https://www.usatoday.com/story/money/2019/07/08/space-race-inventions-we-use-every-day-were-created-for-space-exploration/39580591/

But…I digress…his other point is these are water purification drops and are at least safe to consume by very nature of their presence on shelves (been through that rigorous testing to certify for marketplace). And along those lines, if you look at the science of what it does, it is basically dramatically raising the 02 content of the water to kill pathogens.

If you are curious about potential science that supports this theory / approach I have attached a few articles that might be of interest.

These articles examine chlorine dioxide’s ability to reduce or eliminate viral lode.  There is nothing presently looking at the effects of chlorine dioxide on COVID 19 virus or any human studies looking at chlorine dioxide’s effects on viruses.  My doctor is trying to find someone who can do a human trial involving individuals suffering from COVID 19.  He told me this week, a 4th person who became ill took chlorine dioxide drops in water and within 24 hours their fever dropped from 100.8 to 96.8 (normal for them) and by the 2nd day, they felt nearly 100% better. 

One other note: there is likely an additional consideration of this concept as a front line defense. That is ensuring that, if infected, you try to treat the virus while there is low viral load. In other words, before it progresses and gets “out of control” in the body (to use a medical phraseology 0-;). Ideally this would translate into before it moves much further beyond the nose or mouth. This might explain why the doctor’s sister (who was, while not infected with COVID-19) took longer to see results than the others.

Viral load is a reason (tangentially speaking) to try to use gloves and mask when in public (though I admit to not doing that). If you get a little bit of virus off a doorknob it seems like that is preferable to making out with someone with covid-19 on spring break in Daytona. 0-;

https://nymag.com/intelligencer/2020/03/is-viral-load-key-to-understanding-coronaviruss-severity.html

Finally, to re-emphasize the disclaimer above, I know that we have FDA controls (anti-snake oil salesman, scientific method based approaches) for a reason. And for a ton of good reasons! I am not a medical doctor by the furthest stretch, nor is this medical advice, but I feel impelled to pass this information along. I put a picture of what I bought /Doc advised I buy to keep on hand, along with instructions if anyone is interested…please do with as you see fit.

Instructions
From bottle A and 3 drops from bottle B in bottle of water and wait 30 seconds to activate it.

Drink water

Gradually increase to 4-6 drops from each bottle and drink up to 3x per day.

Can increase up to 24 drops per day.

COVID-19 Dress Code

We are very thankful for my job and that I have the opportunity to perform much of my work from home. Most in my company are dealing with the same situation. I was told the other day that we are averaging 40k teleconferences a day with @ 150K participants. That’s a lot of hoping that you pushed the mute button before you let one rip or no one can see your present “state of attire” while giving a presentation.

Dress code 2019 (some days)

Dress code post C19

Yeehaw.

Some Inspiration from THE Dude

Success

My company of 25,000 employees operates adjacent to a wider group of companies with over 100,000 employees.

At the beginning of 2019 I was promoted to Chief Engineer for over 600 over engineers. I am ultimately responsible for over $1B of technical performance and solutioning. I also manage the technical leadership for a few programs, with some of our brightest fellows and PHDs on my “desktop” or within my HR “control.” Add to that over the last few years I kind of developed a reputation of being a “fixer” where VPs and directors send me out to various failing, usually high profile efforts, to get them on track from a cost, schedule and quality perspective. Its a lot of responsibility but I love the challenges and it’s fun most days. By the grace of God, I have been able to enjoy some success despite the pressures and health detours.

In hope of inspiring others I was recognized 2 years ago with the company’s most prestigious award for individual technical performance, given to only @ 250 employees in 2018. Crazy I know but lightening struck again. I was recently given the same award for my performance in 2020 – in this case part of a larger technical team that achieved some at risk, high profile milestones- on a different project. These are pretty “epic” awards most people in the company will never achieve, let along 2 years in a row.

All that is say for my few readers – you can be productive with the help of great friends and colleagues, great bosses, and at least in my case, absolute, total assistance from the Big Man upstairs. I am just not that good, smart, faithful etc.

Reading

I thought I would pass along some of my most recent favorite reads.

I have a man crush on Krakauer. I love every word of his without fail.

Similar topic, great stories, especially Gonzalez’s recount of his Dad’s improbable survival during WWII. Warning – may make you not want to step outside again…though that might be good right now.


I would argue (and I don’t think I am alone in this thinking) that government contracting is ripe for disruption from not only a technical perspective (which is happening already) but also from areas like bus ops, contracting etc. In fact those areas should be included under the banner of “Digital Transformation” in order to be truly successful. The book talks about how many new as well as established S&P 500 companies have or are turning towards subscription based models and the “tyranny of margins,” suggesting it is not only much more profitable and better for customers but also a matter of survival in today’s environs. A lot of this was a natural evolution or extension of movements like agile and their enabling technologies (cloud, continuous integration servers etc)…great book if you are interested in such topics.

This is a great read on leadership. Fuses together many current trends like disruption, agile, ethics etc in a largely a-political manner (which I appreciate).

Lastly, this is kind of fun analysis of company logos /infographics.

Music

Behind as usual I recently caught this GD series on Amazon prime. If you like or were ever into the Dead, this was really fun.

  • I am pretty convinced I will hear Jerry playing when I die – I know that’s a pretty over the top. Sorry. His guitar and voice was religion for me and the music still puts me in a place that few sounds can on a nearly 100% basis.
  • As the series pointed out, Jerry Garcia never wanted that kind of adoration. It may have, to a some degree, led to his sense of isolation and ultimately his demise; thus proving among other things, there is so much we don’t know about people, situations and things when we are embedded in them or until we get older…
  • I was happy to hear Bob Weir say he thought the band was playing exceptionally well from @ 1988 – 1991. This is roughly the time I jumped on the bandwagon. Speaking of which, I think most of us who made a study of dead music would cite Cornell 77 as the pinnacle of scarlet –> fire jams but this is pretty awesome stuff from my era:

Then again, and this is probably making an even further fan-boy fool out of me, but I think I might also hear Browstein’s bass at the pearly gates too.

Okay good night and best wishes.

From what

25 something years ago when I was 20 something years old I was in Albuquerque visiting friends.

Lacing my running shoes, I announced, “I’m gonna go for a run.”

Without pause somebody said, “from what?”

Nice.

I have been jogging a long time. Rain, sleet, heat, wind, snow, sub-zero, I’m good. This last stint during the butt-first slide down the razor blade was the longest break from running in 30 years.

Of-course there are studies, articles, talk and opinions etc “out here” extolling the benefits of exercise galore. I think most can agree exercise is probably a good thing. Good for brain, helps with mood/anti-a-hole and stress medicine (my case), sleeping, heart, weight, blood, intestinal health and pooping (I don’t know if they say that but you know I had to throw that in there), and on.

I recently saw this article from Discovery, which I thought was veddy veddy interesting; namely that doctors will prescribe exercise in the future because, according to their studies, it has been proven more effective than many drugs for many conditions.

The goal is to think of exercise as a medicine — a therapy that they can prescribe in specific doses for specific needs.

https://www.discovermagazine.com/health/why-exercise-is-the-real-miracle-drug

My recent experience in fact suggests that it can serve as a kind of anti-medicine. After a week home from the hospital, deciding to go for a run – however pathetic and slow and as much as I did not want to do it- was really the catalyst that got me off pain meds and the cabinet full of nausea, constipation, and other “pharmacopia.”

It’s a bonus that queen Elsa also approves…

Now, that is not to say I stopped everything. The steroids and remicaid were instrumental in countering the immune system assault on my insides. My doctor recently asked, in fact, if he could publish a study about my case (there is only 1 other reported case like mine in the community).

Queue the comments, “Yeah Leland we always knew you were a special case…”

That said exercise really did make a difference. I don’t need a million person double blind placebo control study published on NCBI to convince me of it. As Discovery suggests- exercise, in my experience, was/is medicine.

May be all this talk of exercise is a slightly sleight-of-hand-way to say that since my last post I believe I am doing better. I’ll forgo the humble bragging here and the cataloging of how, other than – well, um, yeah about that, err – stage IV cancer, life/wife/family/friends/job/faith/dog/cats/teeth/toes/nose hairs etc are like Plato’s perfect forms, what that be-atch perfection can only dream about man!

But I do feel good. I am grateful and at peace – at least I like to imagine- more times than not. I also had a birthday, on Christmas Day which apparently is the least popular day to have a birthday in the US. The author attempts to serve some noble topspin on the whole LPBZ (least popular birthday zone) situation, concluding his article with the statement that those so blessed should…

… take some comfort in knowing the relative rarity of your birth makes you even more special than you already are.

I know. Start grating the formaggio.

“What-eves.”

It’s been a great year.

God-willing there are more in the plan.

Thanks for reading and Happy N-Y.

Knife Fight in Phone Booth

I called my oncologist last week, a busted, broken and spiritually wasted man. I had not planned for it but I broke down on the phone. I was truly done. I asked if he thought it wise if I go to the hospital?

He said, “yes and I am worried about you, you have lost a dangerous amount of weight in a short amount of time. Let’s get you in the hospital where we can get you some help.”

I said, “Well, okay, I’ll go in the morning.”

Kind of comical now.

By that time I was so beaten I could barely see reality. I think I had fallen into the cycle of pain and despair and it was kind of “comfortable” at that point. The hospital seemed far away.

Anyways I just got out of the clink yesterday, having spent 9 days on the inside. A great move in hindsight. I think I was nearing a dangerous state of hopeless resignation that this could be the big one, Alice. That’s not a good place to be. Fueled by starvation for weeks, I have never been so “dark” in my life. Only an atom sized particle faith and the boys and Sarah kept me going, barely.

It began, in hindsight, last spring. I started having trouble digesting food. I thought I knew what it was (which is usually a bad sign for me, self-sufficiency or assurance are not always a friend when you have to also be a part time medical detective). The food, especially dinner, went nowhere but back from whence it came. I started blowing chunks- big vom dot com, liquidating my assets, channeling Uncle Ralph.

I was convinced I had gastroparesis- “frozen stomach” or a state where there is likely nerve damage that has impeded or interrupted the normal signaling that occurs from muscles to activate and move food through the small and large intestines. I had tested positive for this two years ago and it was suspected that the different meds were the culprit. I was presenting what appeared to contain all the usual symptomatic suspects. Things would be “manageable” by eating differently at night and taking a few prescriptions (there are not many, gastroparesis is a little scary in that it is notoriously difficult to treat).

The problem is, as with most things in life, it is often not that simple or as clear. My condition got progressively worse and worse. As of @ 2 months ago I could hold no solids down and was not having great luck with liquids. I basically was heading down a course of slow starvation.

So began the knife fight in a phone booth. A fistfight in a broom closet. A gunfight in a wheelbarrow. Toss some starving dogs and a couple of grouchy pit vipers in the barrow with me too. And I was armed with plastic butter knife and a three inch spork.

However you want to frame it, I got to experience an epic stabbing, shooting, fisticuff ass whipping. Lost 40 lbs in @ six weeks. Couldn’t hold anything down, constantly nauseous, so tired and worn out I could barely crawl out of bed to work or watch the boys play hockey. No exercise. Joy gone. Argh. I recommend this particular diet plan only to your worst enemies but not would not wish it on anyone.

Anyways, admission to the hospital proved a good choice. They got me comfortable. I didn’t have to worry about such things as letting Elsa out, using the squeegee after a shower (I know rough but it was amazing how the simplest things like brushing my teeth became monumental) or walking 10 feet to the toilet. In fact they even provided a urinal next to the side of the bed. That’s living man. No need to get out of bed when you can roll over and make the bladder gladder. I should have brought this marvelous invention home with me! Hello Amazon Prime. Maybe I can get one for the couch and the office too.

Although there was drama around this too. I was so out of it one night I didn’t realize the 32oz bottle was dangerously full when evacuation began. There is nothing like splashing warm pee all over your body at 3 am in a hospital bed. Its not a great bath. Needless to say the nurses and techs were super cool about my body temperature warm problem and the accompanying mess. They weren’t, at least on the surface, peeved or pissed or even pee-od. Derp.

There was plenty of drama of the more intense variety as well. The reading of the endoscopy (upper scope of stomach) was that a large tumor in my stomach was causing stenosis (closing) of the stomach to the small intestine at the pyloris muscle (responsible moving food through). There was a pinprick size hole between the two. The stomach was “angry” according to the doctor’s fancy medical jargon. Needless to say I could relate to my poor stomach’s feelings. We were both pretty angry.

But the good news? After biopsy and further analysis – no tumor! No cancer! The conclusion? I guess every organ can have on “itis” which is basically inflammation. Colitis. Hepatitis. Pancreatitis. You get it. I had an extreme case of gastritis, likely fueled by the immune therapies which had prompted by body to attack my stomach, causing massive anger management problems and serious complications.

So, lots of steroids later I find myself home and listening to Set III of the 7/20/2019 Camp Bisco show. Righteous. I have what I feel like is a modicum of mojo back. I am ready to go here. Put your fucking dukes up.

It’s strange too. My eyesight changed over the last 2 weeks. Or maybe it didn’t. All I know is that the world seems fuzzier and yet there are things that are clear. There’s a metaphor in there, in my reduced vision, probably not too carefully buried, but I think I will take my time on the excavation.

I believe I know some of the things I will find in there under the dirt. My love for my boys and Sarah. Family. Elsa. Friends. Work. Kicking ass or at least trying to in the face of total collapse of my resources and spirit. On my own I am nothing the Father does the work (even if it seems to take longer almost always than I would like).

While I sift through the debris and take some timid steps back to the land of soup and salads, the eye doctor will be waiting for me and my insurance card on Wednesday. 0-;

Here’s my favorite Halloween song and one the greats from the 80s. It happens to be a pretty good depiction as well of what the doctors meant by “angry” in the stomach. Crank it. Bop-Bop.

Look Ma, a Hickey

Melanoma.

Go figure.

One can always hope, as I did, that the lump on my neck was the result of a benign swollen lymph node.

Unfortunately no.

The “C” word.

Cantaloupe? Cacafuego? Catch-fart? Confuddled?

Nein!

Cancer.

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.

So next.

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.

Just like the old days…college…

No, wait a minute.

I wasn’t that cool.

Image result for funny hickey meme

WARNING! GRAPHIC CANCER CONTENT BELOW. SOME IMAGES MAY BE UNSUITABLE FOR YOUNGER AUDIENCES
Cancer Hickey:
NOTE: OBJECTS IN THE PICTURE (LIKE MY NOSE) MAY APPEAR SMALLER THAN THEY ACTUALLY ARE

I Don’t Know

The Mushroom Men of Knarf were silently advancing on the unsuspecting earthlings, and their thin milky blood ran colder when they smelled spores from fungal toenail infections rising from many of the invaders’ feet, for to them it was a wondrous and shocking scent of kinship, homeland, and asexual reproduction.

Thank you, you hero David Nelson, you deserved higher than #9 on ’33 Of The Most Hilariously Terrible First Sentences In Literature History’

And you Dennis Barry who 24th place seems now like tragedy unfolded.

Despite the vast differences in their ages, ethnicity, and religious upbringing, the sexual chemistry between Roberto and Heather was the most amazing he had ever experienced; and for the entirety of the Labor Day weekend they had sex like monkeys on espresso, not those monkeys in the zoo that fling their feces at you, but more like the monkeys in the wild that have those giant red butts, and access to an espresso machine.

Wasn’t sure really what to say tonight. Have been writing a lot, mostly in early morning. A novel. I wonder if I am making the above list someday. One can only hope.

I had scans last week and will get results this week. Participating in a clinical trial. Feel great for the most part. Work is good. Love those boys and their Mom. Happy Father’s Day.

Other than that, feeling rather, I don’t know. Is TBD a thing for things other than text and email messages? Probably has something to do with upcoming radiology readings but I am feeling very “TBD.” Its not that I don’t believe I can be healed today by whatever means. I think I am just open to possibilities.

In the absence of my own inspiration, I figured I would share some other people’s. These are things I have found inspiring over the last few months.

Blinkist – in my words these are “Cliff Notes for Adults” and the results are powerful. Enabled “reading” @ 120 books in the last 3 months. Some of my favorites – The 5am Club, The Telemore Effect, Difficult Conversations, The Presentation Secrets of Steve Jobs, Fear, Collaborative Intelligence…lots of titles to name drop here, lots of amazing thinking. If you like ideas and like skipping to the point (or, um, “speed reading” books), you might like blinkist. In one of those speed reads the author said to try to get 1% better everyday. That’s statistically impossible but the point and results could be profound. Who can’t make a 1% change or improvement today?

How to Starve Cancer by Jane McLelland. Not only does she have an killer last name, but the book is fascinating. McLelland survived 2 terminal cancers using cocktails of repurposed, off-label medications for conditions like Diabetes, High Cholesterol and Blood Pressure. Her thesis is that we should target the genetic AND (more importantly) metabolic pathways by which those mutant freaks fuel, build and maintain themselves. Her results were self evident and potentially revolutionary.

Related to what goes in, and I kind of regret bringing this up, but more damning evidence for bunt cakes and root beers, Sugar Sweetened Beverage Consumption and Risk of Dying: the numbers are bad. I am now 7 years without processed sugar or meat. Not sure if I should cry or sing or cry-sing. I give you quote from the sage Dr. Schor,

“Drinking sugar sweetened beverages with any regularity increased a person’s risk of dying perhaps more than even we might have guessed.  Women who consumed ≥2 servings of SSBs per day had a 63% higher risk of death. For men, risk of death increased by 29%.  For men and women combined, HR was increased by 52%.”

There was also a pretty interesting paper released in early April regarding probiotics or the good bacteria said to bolster immunity and prevent illness. Researches have ‘understood’ or at least established a relationship between the microbiome and positive responses to checkpoint inhibitors (immune therapies used for cancer). This research suggests a high fiber diet, promoting greater biodiversity is best; and, surprisingly, taking over the counter probiotics can actually have a negative impact on efficacy (how well it works). Wild man. Definitely something to consider for my mela-homies on immune therapies, Diet and Probiotics Influence Response to Immunotherapy. If you want suggestions on how to get good probiotics without pills let me know.

Finally, I had not realized that Christianity had its own tradition of meditation, not too far removed from what sounds at times decidedly like eastern sounding practices (but buried by 2,000 years of history and a division of church ideologies that long ago). Haven’t read stuff like this since I was using Merton to impress girls at keg parties back in the day. I like it. Hesychasm.

Anyways, the little I know is only a little and that is not very much.

To Hair and Back

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.

Har-dee-hair-hair.

Please don’t hate me for the cheese. I really can’t help it. Blame Israeli remote controlled shark spies, Denver International Aiport, and 98 brain tumors. Two of those reasons can absolutely be implicated in what you see before you.

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 love me some licorice.



Dad is Bauld-o

Two days and counting until the conclusion of my aristocratic life of leisure. I have to admit I was only partially kidding when I asked the doc today if she could write me a note for a few more days at home. She said yes, but against my better judgement, I declined. 0-;

“Please Mommy can I stay home from school?”

I know…pull the hot lamp next to the bed over, apply to forehead, simulate fever…yeah that’s it, that’s the ticket.

The truth is, its time to return to normalcy and that means getting back to work. I know it and think I am ready. Sorry work, the tyrant shall soon return.

The last 3+ weeks have been some of the most intense life experiences I have ever had. The sheer potency, duration and length of extreme pain, emotions, spiritual (if I can be so bold as to say that) and human interactions will not soon be forgotten. Nor should it really.

After the fog cleared and the multitude of side effects subsided, I have been able to read quite a bit again. Not that I wasn’t learning a lot binging The Office.

Most instructive but, not that there is anything wrong with it, there are may be more nutritious entertainment, maybe.

In addition to one of my favorite go-tos “blinklist” (a great way to cheat on good books) and a host of business and science topics, I mainly went on a near death experience book tear – Eben Alexander, Mary C. Neal, Anita Moorjani, Elizageth Kubler-Ross, and a few others I can’t recall. Fascinating stuff if you have not checked the subject out. For whatever reason such accounts seem to resonate with me. Maybe because they are so, contemporary. Hearing someone else’s experience in their own words really lends a degree of credibility (for me anyways).

When you are diagnosed with a life threatening illness, thoughts about death that was supposed to be coming when old and gray(er) leap across time and become an more imminent concern. I realized when it happened what an illusion time really is, and how (however cliche) fast a recognition of my own mortality would come whether that was to be in 2 days or 30 years. Might as well think seriously about such subjects now and try to settle with it.

Perhaps even more compelling than the comfort such near death experiences can bring to ye (me) of little faith, there was also the impact described in many of those books. The effects of the a near death experience almost invariably included dramatic physical recovery from catastrophic illness or injury.

Anita Moorjani, for instance, had slipped into what was believed to be her final coma, with massive tumors consuming her body; only to wake, post near death experience, to see such tumors melt away. The medical community has a term for these unexplained recoveries, “spontaneous remission” and, as discussed, each one of those “NDEs” was accompanied by complete recovery. Fascinating.

For me this only serves to underscore the importance of the mental, emotional and spiritual side of combating a life threatening illness. Here I think Bernie Siegel, MD, has a lot of powerful stuff. If I were to recommend any book, beyond the NDE authors above, I would pimp his, “Love, Medicine & Miracles.” I’m too lazy to provide a book report here, but let me just say I think this is a must read for any cancer patient as well as the doctors treating them. The relationship between the mental, emotional and spiritual game with the physical emphasis (arguably over-emphasis/final word) in western medicine is compellingly laid out.

Anyways, back to more pressing matters. Namely – HAIR.

I was shedding more than the Elsa the dog all over the house – clumps on the couch, shower, bed, shoulders, etc. Its still falling but we decided to preemptively shave the head. The verdict is still out whether the eyebrows are next.

The boys, in all their kindness, immediately commenced the cat calls, post razor.

Let’s see:

“Dad your nose looks really big now – even bigger in fact. And those glasses, man those are like huge.”

“The scars on the back of your head are really ugly.”

“Yeah,” D said to his Grandpa, “He’s pretty much ‘follically’ challenged full time now.”

“Nice skullet Daddy.”

“My Dad is a baldo.”

Gotta love it man.

 

 

Up and Running

The heavy exfoliation due to deep excavations of raking fingernails across my red, raised pulsing full body rash halted a few days ago. I know..thanks for the image.

I am pleased to say the itching has been successfully quelled thanks to putting 3 different high does anti-histamines on board. So things are “under control” in that regard. Though I laugh – snicker is probably a better word – at such bold statements.

Ha! Did he just say ‘under control!’

I am in control of precious little. In fact I shutter/cringe at such tomfoolery.

The only thing I control these days is my attitude and I am probably batting @ 250, with a low on base percentage, high number of popups, more strikeouts than walks, and a lot of swings at balls outside the strike zone.

Even so, I am still swinging and that’s something.

Each day since I have been home has gotten better.

The fevers have also subsided. I tossed the 24 hour Tylenol and Aleve regime in the trash.

I am no longer wheezing and sputtering up the stairs like a fish out of water.

I even kicked on the running shoes this afternoon and got out there.

I am sure it was a sight to behold. Some combination of:

Took me twice as long as normal to do a winding, breathy route around “da hood.”

But, again, I mean I swung at it.

Thankfully none of the ravenous mountain lions or marauding packs of coyotes decided to cull the gimpy dude with the hair follicles trailing behind him like a path to an easy meal.

Getting my “run on” is good too because on the way back from the doctor’s office in Denver yesterday, our 2012 Subaru lost its mind. After a series of tows to different shops, it is looking like the car is in need of a complete lobotomy. That is, engine + transmission + flux capacitor repair.  That will all equal a new car more than likely.

Needless to say this is not the financial blow, time sink or aggravation we were seeking…though there is never really a good time. Throw it on the pile.

Back to that attitude, it needs to be said – I am glad I was with Sarah on the interstate as we limped our way off the highway, a precarious situation. I didn’t freak out. We didn’t even fight or panic. And though I would have preferred it to just be me in the car, I am also very glad the boys were not with us.

So, all that is to say…

I am getting there even if I am not all here.

Big Smoochy-woochy,

Leland

Whigging

Walked out of the hospital @ 4:30pm yesterday.

Getting home was a surreal, wonderful experience.

Sitting on the front porch with a spot of tea, feeling the fresh clean air and hot sun,  getting back to hanging with my two favorite critters and their Mom-  totally righteous Dude!

That being said, the transition back to normal life has been a challenge after 10 days on the “inside.”  Seems when you take the cancer patient out of the hospital, you are still left with the cancer patient.  And my stay at U of C seems to have left an impression.

The IL-2 was not only the climatic last stage of treatment but proved the toughest, as advertised.  I had 6 spikes of fever (4 over 106), hot then cold then hot again, sweaty mess, nausea, headaches, rigors (uncontrolled full body shaking lasting 30-45 minutes), forced bed rest due to blood pressure crashes which meant if I wanted to “use the facilities”I had to whiz in a urinal in bed (which is awesome when you are shaky and they are continuously pumping you with fluids; and quite fun when a crowd of people come a-traipsing through the door- which they do frequently), and I didn’t sleep for 48 hours except for heavy drug induced stupor. Grog!

Here I am flanked by ice packs with my go-to cheesy grin.

Getting out of the hospital,  I had this vision of returning home and pouring myself into bed and zonking for 12.

Yeah, not so much.

Walking up a flight of stairs or the half mile loop at the end of the block leaves me huffing and puffing, my body is marked up from all the needles and tape ripped off (I hate tape it should all burn in hell), I have entertained several uninvited high fevers, am very flushed and bloated especially around my peeling eyes and red face, and my sleep is stuck on hospital time with lots of interrupted fits and turns punctuated by general thrashing. The latest joy is a full body rash. I am itchy as hell and was up all night, calling the on-call oncologist team multiple times in the wee hours of the morning as I scratched my skin raw like a poor flea infested dog. I did discover an  ice cold shower stopped the itching for 1-2 hours. But, seriously, who in the hay wants to take a frickin cold ass shower at 4 in the fricking morning? Um, “me” I guess.

Finally, we are expecting my hair to drop any day.

I am sharpening my purple eyebrow pencil and looking for a Pedro wig.

I also downloaded an app to sample a few synthetic hair styles.

Not sure what this look is.

This one I am referring to as the Curt Cobain.

This is my current front runner.

In meantime, we are hanging out, waiting for a miracle, working through the side effects.

The TIL study has the full power to deliver one and does for 25% of the people that endure that madness; while around @ 25% achieve some benefit.

I am hoping the plan is to be in the miraculous category.

“Stand up tall, pretend you are strong, in the hopes that you will be.”

Day 0

Typing fast since I am running out of time before the “big event” starts and I am going to be down and mostly out-of-it for the next ~ 60 hours.  Reps from the pharmaceutical company will arrive in my room with, I am told, an entourage. They will perform a minor magic trick as they thaw bags of my killer t-cells grown in the lab. I hoping for a dry ice style smoke experience and maybe a Stonehenge effigy dropped from the ceiling.

So commences the end of chemotherapeutic agents and the start of final stage of interleukin 2 infusions. Let the “fall risk” / forced bed rest / fevers/ heart monitoring / help peeing / uncontrolled tremors / and who knows what else begin.  Thankfully there promises to be drugs and expert care involved.

Some people have been known to perform this high wire IL-2 trick from the comfort of their homes. I would rather be here. CU Hospital is a great place. The doctors and nurses have been and are amazing. They have cool response, found in every one of the staff’s lexicon, to the phrase thank you, “of-course.” It reminds me of Chick Fil-a’s “my pleasure” or The Prince Bride, “As you wish” – as if you never needed to actually say thank you, like they live for it. Whether or not this is actually true, its nice.

A few more days to go! I have been looking at this experience as another marathon or physical challenge. We are on the last 10 miles or so, the “back stretch” as “they say.” Just like in some of those past experiences, I am thinking about family.

I have seen Sarah almost daily and the boys either in person or facetime’d. Its not the same.

I miss my girl Elsa. What a doll.

Home soon!

One last thing before I am bound to this bed – THANK YOU for the emails, letters, meals and help you have provided Sarah, and for the visits. I can brag on the mountain of letters received, the chocolate I have been handing out to the doctors and staff like, ah, candy and all the well wishes.

See you in few days, I’m going in.

Leland