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…
A few years ago I started getting migraines. I didn’t know they were migraines at the time because they weren’t painful, they just knocked me for a loop – dizziness, nausea, in need of sleep, lights too bright, ears ringing, the usual suspects.
The first one I ever had scared the bejesus out of me, hitting me so hard while I was out mowing the lawn that I almost fell to my knees. It even knocked loose vitreous from my left eye and to this day I have little black gnat-like floaters buzzing around in there and annoying the hell out of me.
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].
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.
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.
On this day five years ago, I received the news that a recent lung biopsy showed that my lungs were inflicted with a severe form of graft versus host disease (GVHD) called bronchiolitis obliterans syndrome (BOS). BOS, I came to find out, was a known but uncommon side-effect resulting from a bone marrow transplant (for leukemia) that I had had earlier in the year. And by severe I was told it meant the BOS was incurable, non-reversible, and, in most cases, aggressively fatal. I was also told — because I had asked and insisted on an answer — that, according to a National Institutes of Health (NIH) study of the time, BOS had only a 13%, five-year survival rate. In other words, there was an 87% chance that within five years I would be dead.
Well, it’s been five years and here I am – a newly minted Thirteen Percenter.
Can a brother get a “Hell yeah?”
Hell yeah!
Anyway… at my most recent appointment with my oncologist, in addition to his standard declaration whenever he sees me of, “So, I see you’re still alive,” he also declared that my present condition may just be a miracle of sorts because it appears that my incurable BOS may have actually been cured… somehow.
I don’t think I would be overstating if I said that, because of all my goings on these past five years – goings on such as leukemia, GVHD (and not just of the lungs, but also of the eyes, liver, and intestines), prednisone side-effects, cytomegalovirus (CMV), and heart failure to name a few – I think I’ve learned a thing or two about life in general and living it in particular.
Now, if you search around this site, I’m pretty sure you will find that much of my writing, mostly encapsulated in my haiku, reflects a lot of the insights and learning I’ve garnered from these goings on. However, just because I like you all so much and don’t want you to have try to sift through this site for days on end in an effort to discover these insights and learning, and because short, pithy lists are all the rage these days, I will identify for you the top thirteen things I learned about how to not only not die, but mostly about how to best live your life filled with happiness and meaning, regardless whether death is looking you directly in the face or not.
I’d like to think that one or two of my three regular visitors (one of whom is me) come to this site to gain a deeper understanding of my creative writing by exploring my short stories, and poetry, and my insightful and sometimes witty flash fiction, and, most importantly, to buy my books.
Yeah, that’s what I’d like to think.
However, the reality is far from it.
The unfortunate truth is that, by far, most people who visit this site do so because they are seeking out information about my diseases, past and present.
The most common search terms that lead these seekers, or anyone for that matter, to my site are:
gvhd lungs
bone marrow biopsy
hickman line
graft versus host disease lungs
bone marrow needle (the article these terms lead to provide for some interesting pictures (viewer discretion advised)) prednisone and caffeine
prednisone and coffee
I say the truth is unfortunate not because I’m upset that people are not here to read my creative writings (although I confess my ego is a bit miffed), I say it is unfortunate because I know that if someone is here to learn about my experiences with leukemia and graft versus host disease, then he or she probably is in for some challenging times.
And that is unfortunate.
About a month after I was informed I had leukemia, I started blogging about it at a site I called Marrowish. And I blogged there regularly for two years. For two years I was consumed with wanting to know as much about my diseases (first leukemia and then GVHD…of the lungs…and eyes…and liver) as I could find, and I wanted to share this knowledge with as many people as possible.
But eventually I got sick of being sick…and of having my thoughts and actions being consumed by it.
So I stopped thinking about it (the best I could) and writing about it.
But, seeing how “popular” all my sick-related articles are, perhaps it’s time I began providing updates on my health again from time to time.
I’m still certainly sick of being sick, but the good news is I haven’t really gotten much sicker since my last update (which was more like a major whine-fest than a health update).
In fact, I’ve been pretty stable and have even improved in some regards. This stability and improvement may be because I have been doing some pretty cool health-related things lately (I say “may” because during the past four years of my involvement with the medical community, one thing I’ve learned is that there are not many certitudes when it comes to healthcare).
I’ll try to expand on these in later articles, but here is what I have been up to health-wise the past year-and-a-half:
– April 2011, I began a five-year Bronchiolitis Obliterans Syndrome (BOS) study at the National Institute of Health. This study’s goal is to get FDA approval to use Montelukast (commercially known as Singulair and typically prescribed for asthma) as an authorized treatment for BOS. Since I began taking the drug I have been able to stop taking the steroid called prednisone—which is a major victory—and my lung condition has remained stable, as proven by regular pulmonary function testing.
– January 2012, I began twice weekly Extracorporeal Photopheresis (ECP) treatments at Johns Hopkins Dermatology Center. While there is no conclusive evidence as of yet, it is thought that this blood treatment may be effective in bringing calm to all those crazy outta control T-cells (affectionately called GVHD) that we post-transplant patients tend to get. I cannot say for sure that these treatments have helped; but I can most definitely say that they haven’t hurt — except for the fact that they take a big painful bite of time out of my life. Each treatment is about three-hours long; add to that the drive time coming and going plus the system prep time and it comes close to being a five-hour-per-treatment bite of time. Ouch. But, if you’re looking for options to treat your GVHD, you surely want to consider ECP as one of them.
– May 2012, I was fitted for Prose lenses at Johns Hopkins Wilmer Eye Institute. These scleral-type lenses used to be referred to as Boston Lenses, since Boston is where they were invented and was the only place where one could get them. Fortunately, Johns Hopkins now also provides the service. These vision-saving lenses have drastically changed and improved my quality of life.
– August 2012, I had cataract surgery in both eyes. Yeah, prednisone may have saved my life, but it definitely took a toll on my body. However, after I had the surgery and once my Prose lenses were readjusted for my new vision, my eyes are now bionic.
Those are the major things that I’ve been involved with that I feel could benefit others who are dealing with similar challenges as me. Of course, there are other things I have done and continue to do (like my countertop calisthenics, for instance) that may be of use, too, and of which I will write about at a later date.
Who knows, maybe someday I might even coral all this health stuff into an easy-to-read ebook, or something…
We’ll see.
Until then please remember that whatever it is you’re seeking, or regardless your reason for visiting, I hope you find at least a little bit of solace from the words that have accumulated here over the years.
Thanks for stopping by.
~~~~
PS… Please take the time to read my Disclaimer for this site.
