My Johns Hopkins oncologist once told me that if he had twenty patients with lung GVHD, aka bronchiolitis obliterans syndrome, as bad as mine, he would have 20 dead patients within the year. Of course, he didn’t tell me this until many years after my initial diagnosis when it was certain I was not going to abide by those fatal odds, odds which were significantly more fatal than what my NIH doc told me.
He also told me that if I ever got pneumonia, it would be game over for me.
Well, I got bacterial pneumonia a year or so ago and, well, here I am.
Only the good die young and all that, you know how it goes.
Well, after I was cleared to re-enter the game of life at full speed and contact, my doc clarified his game over remarks.
He meant to say, or, according to him he did say and I just don’t remember, that if I ever get fungal pneumonia, then it is game over.
Well, well, well…
That has upped the game’s stakes quite significantly.
And now I wished I had never watched that damned terrifying show that was adapted from that damned terrifying video game.
Of course it wasn’t nearly as terrifying until put into the context of my doc’s prediction.
And which is why my heart ever so slightly skips a beat whenever I see one of the evermore present fungal superbug spreading headlines.
In October, there were 57 new clinical cases of the drug-resistant, potentially lethal fungus that can invade a person’s bloodstream, brain, heart or other organs, according to Nevada Division of Behavioral Health data. In the same month, 123 cases of colonization were reported in which individuals typically have the fungus in the folds of their skin, invisible to the eye, yet are not sick. Those people can still transmit the pathogen.
The fungus can spread from person to person and also from contaminated surfaces and equipment with transmission occurring most often in healthcare settings. Patients who have been hospitalized for a long time, or have a central venous catheter or other lines or tubes entering their body, are at highest risk for infection, public health authorities say. Healthy people usually don’t develop an invasive infection.
Fortunately, I do not live in Nevada…
But, the way things are going, I doubt it will soon matter where one lives.
The only bright side to all this for me is, like I’ve already said…
I became a widow at age 57, after 38 years of marriage to my husband, a good man I loved dearly and miss every day. He was a hard worker, employed in the logging industry for over 20 years until he was in an accident on the job. He was prescribed OxyContin, which at the time was being touted as a miracle drug with a low risk of dependency.
My husband was so functional and so discreet that I didn’t know for years he had moved on to heroin.
I used to smoke cigarettes and drink a lot of alcohol when I was younger. Had to maintain that infamous drunken sailor image that the navy worked so long and hard to develop.
I quit smoking in 1990. I still miss cigarettes.
I quit drinking in 2009. The day I learned I had leukemia.
And after I developed severe graft versus host disease in my lungs and eyes as a side effect from my bone marrow transplant, I was placed on a high dosage of prednisone for many years. When it was finally decided it was safe to take me off the steroid immunosuppressant, it took over six months to wean me from it, such is the power of its addiction and the danger of its withdrawal.
So, unfortunately, I have some idea the overwhelming helplessness one feels when addicted to a life consuming habit that cannot be denied…
When it comes to pain killers, I also have quite the history with them. Fortunately, I am allergic to them. They make me itch madly.
I learned about the allergy after I had shoulder surgery at Portsmouth Naval Hospital a long time ago.
After the surgery I was placed in an open bay ward – there must have been maybe 30 post-op sailors in there with me. I was hooked up to a morphine drip and given a button I could press to activate it.
It wasn’t until much later when a nurse saw me pressing the button like crazy that I learned that the drip was on a five-minute timer.
I scratched and scratched for two days straight because of the opium.
I scratched so much, I had everyone in the ward unconsciously scratching themselves at phantom itches along with me. They begged the nurses to get me out of the ward.
So much for the good stuff.
But what I hate most about pain killers is the constipation… sadly we learned after Matthew Perry’s death that his addiction was so bad that at one point his colon erupted.
Yeah…
But, occasionally, I was still placed on pain killers for various cancer treatment reasons until finally I put it in my health record that I wanted nothing stronger than non-opioid pain killers.
Apparently per my request, after my bone marrow transplant in 2010 I was given a synthetic opioid pain killer I had never heard of before.
It was called fentanyl.
I don’t remember giving my consent to being given the drug. I’m not saying I didn’t give it, just if I did, I don’t remember. I don’t remember much post-transplant.
This drug was so strong, I essentially was in a medically induced coma for three days before my wife, afraid I was dying, finally went ballistic and forced them to take me off the drug.
The irony is, even in my zombie state, the drug made me itch so badly my under garments were torn and bloody from scratching so much. All without anyone realizing it until after I finally came to.
I did a lot of research on the drug for my novel The Good Kill.
It was gut wrenching.
I’m sure you’ve seen the headlines about children dying just for accidentally touching the residue of their addicted parents’ stash.
Some seriously deadly bad juju fentanyl is.
My heart breaks thinking about all the damage it and other addictive pain killers have done and are doing to so many addicts throughout my addicted country.
Yeah…
Xi Jinping is in town.
It is expected that Biden will confront him about China’s culpability in the illegal fentanyl production and trade.
I hope so.
If you have any doubt that it is China’s unwritten policy to get and keep our country addicted to the drug, you need to read this Propublica article.
It’s unbelievable.
It reads like an implausible movie treatment for an outlandish Hollywood action spy thriller…
FDA warns about increased risk of cancer relapse with long-term use of azithromycin (Zithromax, Zmax) antibiotic after donor stem cell transplant
The French study which the FDA based a recent safety announcement on had to be discontinued after two years because the rate of the return of cancer and even death was too high in those patients with cancers of the blood or lymph nodes who undergo a donor stem cell transplant and were taking the antibiotic azithromycin (Zithromax, Zmax) long term to prevent a certain inflammatory lung condition [LUNG GVHD/BOS].
If you’ve never heard of Hof before… prepare to have your mind blown.
This dude, known as The Iceman, can withstand the coldest colds and endure the hottest hots for practically as long as he wants all because he can control his mind and, through that, his core temperature, all through a radical breathing technique of his.
I’ve lost nearly half of my lung capacity due to a side effect called graft versus host disease after from my bone marrow transplant so, apart from the fact my survival rate chances were in the cellar, I never expected to be able to do much in the way of cardiovascular work ever again.
My son turned me onto Hof last year and, while I’m still in my initial stages of learning from this guy, you should see me going for it on the exercise bike and with the weights. I cannot imagine how much more I will be able to progress the more I progress with Hof’s techniques.
Reminder, as per clearly stated in my Terms & Disclaimers I am not a doctor so don’t go doing this stuff without consulting the experts first.
But if you want to experience a new reality of living… watch the fascinating Vice documentary about him below and then go check out this wild man’s youtube site.
When it comes to physical pain, it’s purpose is hardly in question: It focuses us to where our immediate attention and action is required.
We accidentally rest our hand on a hot stove top burner and, without our sense of pain, our hand, if it weren’t for our sense of smell, would become cooked well enough to serve up at the next meal.
We could laugh at this, but sadly and horrifically there are some who do not experience the sense of physical pain due to a rare condition known as congenital analgesia.
But, I was thinking, just imagine if each of the 25,109 and growing followers of this humble site were to donate just $1.00 to help me fund my film LEAVE…
Just imagine how much that would be!
Keep in mind that I am a product of the United States public school system, and that, by design, my higher level degrees have absolutely nothing to do with math, so my calculations may be a bit suspect…
But I believe that if every one of the 25,109 followers were to donate $1.00 to help me fund my film, that would come to the heavenly financial figure of… [finger cipher]…
$25,109.00!
Now that there would be a whole lotta of cheeze and it would help me in a whole lotta ways in realizing my cinematic dream called LEAVE.
Now, I’m a practical man (not!), and I know all 25,109 of you donating $1.00 each to support my dream is an impossible expectation…
But, let’s consider what you get here for free 24-hours a day, 7-days a week, 365-days a year non-stop and in perpetuity for as long as our pretty yet petulant planet revolves around the sun that may help motivate you towards donating that $1.00…
But, even with all this free stuff created just for you forever floating around here, I understand that my hope of everyone donating even just $1.00 is an impossible expectation.
But then again…
SO WAS THE CAVS COMING BACK FROM BEING DOWN 3-1 IN THE FINALS!
AND SO IS THE TRIBE WINNING THE WORLD SERIES!
BUT IT’S THE YEAR OF “BELIEVELAND” BABY!
THIS YEAR, ANYTHING IS POSSIBLE!
WHICH MEANS, WITH YOUR HELP
LEAVE IS POSSIBLE!
…
Uhm…
Too much, right?
Yeah.
Sorry ’bout that…
Anyway…
Please donate what you can, if you can, my friends >> BELIEVE IN LEAVE.
So… yeah. I’ve been having some chemo brain issues for quite a while now and I’m in search of interesting ways to build up my brain muscle to counter these “cognitive disorder” side-effects, as my neurologist so neatly calls them.
I’ve never been a board game – or any game for that matter – kind of guy, but I’ve read and I’ve heard anecdotal evidence that board games do help with one’s focus and clarity issues.
With this anecdotal evidence as my impetus, of course I went to Amazon, the event horizon of the internet, and searched around for what the best board game for my particular interests would be.
And I found this:
As you can see, it tags itself as “A party game for horrible people.” And while I don’t feel that I’m all that horrible, after reading a few of the many thousands of reviews, it does seem like a game that would appeal to my interests.
Does that make me so horrible?
That was rhetorical.
Anyway…
Which brings me to the point of this pointy post…
Research, with you being my source information.
Have you played the game? And if so, what do you think of it? Is it fun? Challenging? Stoopid? Do you feel you have a stronger brain because of your playing it?
And don’t worry, just because you played the game doesn’t mean I will judge you as a horrible person.
Necessarily…
I will, however, admire your courage for admitting it.
If you’re not familiar with the game, you can learn more about it here.
I may be mistaken, but it is my belief that we’ve all been to that dark, lonely place at least once or twice in our lives where we, and the lives we have led, seem…
Insignificant.
Less than.
Pointless.
It’s a scary place and one which I suspect, and hope, the majority of us visit only infrequently and fleetingly because our lives are fulfilling and rewarding enough to steer us clear from the depression that can lead us there.
However, I also suspect that there is a significant minority of us who visit this dark, lonely place more often and for longer periods than most since, according to NAMI, the National Alliance on Mental Illness, nearly 19% of the United States’ adult population experience some degree of mental illness throughout the year [1]. And, according to the National Institute of Mental Health, major depression is one of the most common mental disorders in the United States [2].
I, myself, became a frequent visitor of this dark, lonely place not long after I began taking high doses of the steroid prednisone to combat a deadly disease that was destroying my lungs, and one which I was given little chance of surviving.
It was a hard enough to mentally process that my life may soon be ended by an aggressively fatal disease — pretty tough for anyone to process, I would imagine — but couple that bummer news with a steroid that induces psychosis-like side-effects and, yeah… double bummer.
Consequently, it wasn’t long before I found myself spending nearly as much time in that dark, lonely place as I was out of it.
It’s hard to explain what I and my mind were going through whenever I visited there. I’m not sure there is a way to describe it wholly in just a few words. It is both a tangible and intangible feeling. A cold feeling sometimes. A heavy feeling other times. But it was almost always a feeling of pointlessness. A feeling of… Why bother?
I was dying. My body had failed me and I had failed my family. The only thing I felt I was good for now were my less than adequate disability checks. Were I gone, my life insurance payout would have been much more rewarding and helpful for those whom my absence would release from the burdens my illness had placed upon them.
Yeah… I was down there in that indelible darkness of depression pretty deep.
Fortunately for me I had a saving grace — several of them, in fact.
One, the primary one, was a support network of family and friends who loved me, cared for me, and prayed for me.
Another, was that I like to write.
The Writing Hand
I began blogging shortly after my leukemia diagnosis. Nothing too deep or introspective — though scared, I was completely confident I was going survive — just updates to keep my friends and family informed of my health and happenings during my treatment.
But months later after learning my lungs were slowly dying away as a side-effect result from my bone marrow transplant, and having to begin a hefty prednisone regiment in an effort to slow the dying process down, my positive perspective on things changed significantly.
Though the drug-induced and drastic mood swings made it difficult to focus, I began to blog more often and about more personal matters. And while I regard my blogging experience during this difficult time as a very beneficial, therapeutic activity — an activity I presume many others regard beneficial as well, for a simple Google search of the term “writing therapy” resulted in around 259,000,000 results — it wasn’t helping me to shake the persistent feeling of irrelevance; of feeling that I others would better off if I were dead.
Fortunately for me, since I was spending more time thinking deeply about my life for my blog, I eventually began tinkering with my blog’s “About” page.
And this tinkering proved to be yet one more saving grace; for it led me on a path to try to discover things about myself that others might find interesting enough to inspire them to read more of my writing.
And once I began thinking in more of a self-promotional, third-person kind of way about my life, I began realizing and rediscovering things about myself that I found to be very special and unique.
For the next week or so, I stopped blogging altogether and, like a gold digger after finding his first valuable nugget, I worked passionately on mining through my past to dig up and write down all the meaningful nuggets I could find.
And when I was finally satisfied that my life was properly represented on the page, I began to craft the long, meaningful list of me into a voice that, when others read it, would be heard distinctly as mine.
When I was finished*, my “About” page was more than just being about me… it was me.
And even now when reading this long and winding written documentary of me, I am filled with a sense of gratitude and purpose so powerful that, even if I were to once again visit that dark, lonely place, I could never do so feeling as if my life were pointless and without meaning.
Inspired by the reception the HOW NOT TO DIE article received, I have now made it available as an ebook edition which is now available, for the time being, exclusively at Amazon.
While staying true to form of the original article, I have updated the content for clarity and completeness. Additionally, I have included with the edition, relevant poetry from my newly released book of poetry Short Verses & Other Curses: Haiku, Senryū, Tanka & Other Poetic, Artistic, & Photographic Miscellany, as well as a selection of similarly themed short stories from my forthcoming release LEAVE: And Other Stories Short & Shorter.
Links to all the health-related articles that I have written and posted here can be found near the end of the book.
Finally, a portion of the proceeds from the sale of HOW NOT TO DIE: In 13 Easy Steps will be donated monthly to my wife’s and my favorite charities and organizations committed to the curing and caring of those suffering from cancer and lung diseases.
I hope you enjoy the book.
Note: Even if you don’t have a Amazon Kindle or Fire, you can still read all Kindle products on your computer, tablet, or phone by downloading one of their free reading apps here.
, as well as a selection of similarly themed short stories from my forthcoming release LEAVE: And Other Stories Short & Shorter.