lung disease

Any Wim Hof fans out there?

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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.
 

 

The Purpose of Pain

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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.

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The Power of About

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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.

power-of-about

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
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.

1. https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
2. http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml

*As I live and grow, so too does my “About” page. It will never be finished completely… until I am.

HOW NOT TO DIE: In 13 Easy Steps

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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.

HOW NOT TO DIE: In 13 Easy Steps

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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.

Cool?

Okay, so here we go…

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I’d like to introduce you to my little friends…

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The boys at play
Brothers at play

Friends and new family members, that is…

While we have quite the cat already – Jack Kerouac – whom I introduced some time ago and can be found as part of Photography page’s gallery collection, I am and always have been a dog man…besides, Kero-chan will have nothing to do with me as he is wholly devoted to the lovely and loving wife, and who can blame him.

But that is fine by me. As a true dog man I can remember clearly all my dog buddies who were there for me all throughout my life. My first dog as a child was an old hound dog named Mickey. I remember with fondness how his tail would always slap at me whenever he was happy. And while all my dogs were great friends to me, my bestest of best friend of all was our last dog Shikibu, a tiny little snowball of Maltese magic.

Shikibu
Murasaki Shikibu
There are several reasons I am still here on earth after all the leukemia and lung disease as a result of the bone marrow transplant BS. First and foremost is that Universal Power Source of Infinite and Abiding Love we often refer to as God answering all the many, many prayers from all who love me in the form of my lovely and loving wife’s angelic grace and care, and a close second was Shikibu’s love and devotion to me throughout all that BS. Rarely could I leave my chair throughout all that BS, and rarely was Shikibu not by my side throughout all the BS…tucked away snugly, seemingly impossibly so sometimes, between my left hip and the arm of my recliner. Although eternally a puppy in looks and demeanor, she was an elderly lady when the cancer bug got me in 2009, and she was there for me through the worst of it. She died in 2011, not long after we all pretty much realized that I was going to be hanging around a little bit longer after all. She had many serious illnesses herself toward the end but it is my firm belief she held on long enough to know that I was going to be okay. It took me a long time to get over her passing; though I’m not sure that I really am…or ever will be. But recently I had finally reached a point where I was in need of more canine companion.

We knew we wanted a rescue puppy (it had to be a healthy puppy as I have enough issues of my own for my lovely and loving wife to attend to) and we knew we were going to be patient in the process. I did not realize, though, just how patient we’d have to be. I did most of my puppy searching through www.petfinder.com – it’s a very helpful place as it allows targeted search options. Still, I had no idea there are so many dogs in need out there. It took a lot of time. Always getting close, but never getting the cigar, so to speak. We’d find a pup we all could agree only to find that it was either too far away or that someone had just adopted it or any other multitudinous hurdles of a reason. It started to become tedious so we decided that we were going to wait until springtime to continue the search. That way we wouldn’t have to potty train a puppy in the snow. But a couple of days ago I just fired up the link on a whim and right away I came upon “Stella’s Boys” and that was pretty much all she wrote. We found exactly the pup we were looking for…the mostest cutest Plott Hound mix puppies you’ve ever seen

I wanted another hound dog, in honor of Mickey. One son wanted a Retriever for their loyalty and playfulness. And the other son wanted a brindle coated dog because of their unique look and cool name: brindle ~ Brindley …get it? And the wife did not want a horse-sized dog. All these desires came together courtesy of the awesome folks at the Delaware Puppy and Pet Rescue, Inc. Remembering the other pups we lost out on because of delay, I quickly filled out the online Adoption Contract and waited hopefully for the call back, which came on Saturday in the form of an email from Dianne, a hero and angel of a foster mom to the puppies, and many others, saying that we had passed the background check – a call to the references I provided and our local Vet – and invited us to her home to meet with the boys.

Yesterday we made the beautiful two-hour drive to Landenberg, Pennsylvania. If we hadn’t been on such a mission, the wife and I could have easily spent the entire day taking pictures, as the countryside drive was so pleasantly pastoral. But we were on a mission and as soon as we got to Dianne’s home and I saw all the cute puppies, I knew we were coming home with more than one.

And we did. And now I once again have my much needed and appreciated canine companion…thankfully so.

While I can pretty much guarantee you won’t be seeing many more, if any more, pictures of Kero-chan here, I cannot make that same guarantee about the newest members to our family. And while she will always be my bestest of friend and I will forever miss her, I’m pretty sure Shikibu, up in doggy heaven with Mickey, Kipper, Colonel Kish, Juno, and Sebastian, is perfectly okay with that.

Now whether Kero-chan is okay with the invasion…well, that’s a different story.

Puppies at rest
Brothers at rest

If You’re Here You Must Be Sick…

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(OR CARE FOR SOMEONE WHO IS)

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

The most popular article on this site, which has nearly triple the amount of views of the second most popular article, is Lung GVHD By Any Other Name, where I discuss my frustration about finding out I have the incurable disease.

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.

That was over a year-and-a-half ago…

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.

Toward the Happy End of Legislating Morality

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You may be happy or sad over the reelection of Barack Obama.

I, for one, am happy.

You may be happy or sad over the reelection of the Congressional Incumbents.

I, for one, am sad.

And, you may be happy or sad over the historic legalization of gay marriage in Maryland and other states and the legalization of the limited recreational use of marijuana in Colorado and Washington.

I, for one, am beyond happy; in fact, I am completely and blissfully ecstatic.

Now, since I am happily married and have been so for over two score, and since my lung disease prevents me from inhaling any kind of smoke and my high liver counts discourage me from introducing THC into my system by any other means, I do not foresee me benefiting physically in the least because of the legalization of gay marriage and the decriminalization of marijuana use.

But I do benefit from it.

All Americans benefit from it because it represents a new mind set in our country.

A new hope.

Millions of Americans voted in this election to begin the end of legislating morality.

Yes, there will be legal challenges and set backs to these recent advancements toward the protection of our basic human right to live a life as we choose to live it.

Yes, we still have many states to go and many votes to cast before all Americans’s have the right to be human as each sees fit.

But we have just made a significant advancement, an advancement which sets the momentum toward even further advancement, and which minimizes the chance for significant setback.

And I, for one, am very happy about that.

Steroid Psychosis Blues

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It has been over three months since I stopped taking an extremely potent and addictive steroid called Prednisone. I had been taking it for over a year in an attempt to control my graft versus host disease, which I contracted as a side-effect result from my bone marrow transplant.

As I have detailed in several posts in the past, prednisone, while being a very amazing drug that may have saved my life, comes with a cost…and that cost is many dangerous side-effects.

One of its most annoying side-effects are severe mood swings. When I woke up each morning, I always had to wonder who I would be that day. Would I be one who was effusively overcome with happiness and joy? Or, would I be one who was trapped in a deep, dark depression? Or, would I be a paranoid, hypersensitive mad–as in angry at any little slight–man?

It was an interesting time in my life, to say the least.

But now that I am three-months removed from that oscillating mental trip, I have been reading through the articles that I wrote during that time and I am not all pleased with what I am finding: The articles are either overly sentimental or overly psychotic.

Nevertheless, the articles represent my mindset at the time they were written…a mindset struggling with what is medically termed as “steroid psychosis.”

Today is the first day of spring and I must admit that, in spirit of the season, I have done a little spring cleaning on this site by throwing out a few of the more embarrassing and ridiculous articles; however, I left most of the ones that I feel best represent how my mind processed information, as psychotic as it may have been, while strung out on the evil mind warping drug called prednisone.

No Sense, Whatsoever

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Yeah, it’s another one of those piss and vinegar kind of days…

I mean, Come! On!

Without even mentioning my slowly deteriorating and dying lungs, it’s bad enough that I have lost most of the feeling in my lower extremities due to the neuropathy that was brought on by all the chemo I got juiced up with to treat my leukemia, or that I lost most of my ability to smell or to taste to only our tight-lipped God knows why (my doctors sure as hell don’t know), but, because of the reemergence of GVHD due to my decrease in prednisone dosage, do I really need to now start losing my ability to see, as well?

Jesus Holy Christ!

And Mohammad, too!

(I’ll leave it up to you to determine whether those pleas are requests for spiritual intervention and/or guidance or just blasphemously rude exasperated expletives.)

And it’s even worse than bad enough that not only am I slowly losing my vision to a deeper and deeper foggy blur, but is it really necessary to have to lose it in such a painfully annoying way?

I mean, come on! That’s just a bit beyond the boundaries of good taste, as one of my favorite former clients used to often say whenever things got really fucked up on the job. (I’m sorry if me saying “fucked up” offends you, but I only say “fucked up” simply to keep this little aside paragraph in the spirit of things that one of my favorite former clients used to often say.)

But I mean, Holy frikkin’ Buddha, come on! Can someone just please give me a goddamn break?

When I wake in the morning, my eyes, especially my right eye, feel as if they have a big chunk of jagged glass in them. Seriously. I’m not exaggerating. Well…maybe a little. But still, it takes several hours until the pain associated with the stuck in the eye feeling diminishes enough to where it only feels like there is a modest chunk of rock in them instead of a big chunk of jagged glass. But regardless of how it’s described, it always feels like there is something stuck in them and it drives me absolutely frikkin’ crazy.

And then, I guess my eyes figured since they aren’t needed to see so much anymore, they decided to stop producing tears. My eyes are now constantly dry as a brittle bone. As a result, they burn so badly it feels as if they are being, not bathed in their natural tears, but rubbed down and cured with salt each time I blink.

And then, the slightest amount of light or breeze feels as if someone is thinly slicing into them with razor blades.

Pure torture.

Pisses me off and depresses me so because, all my life the sun was always my most bestest buddy, but now it is my worstest enemy. Not only can I not stand to even catch the slightest glimpse of the sun anymore because it is just too painful, but ever since my bone marrow transplant I can no longer risk getting sunburned because, at a minimum it could screw up my graft, and at a maximum it could kill me.

Sorry sun. I used to love you, but now I must hate you.

Let’s see….what else do I have on my docket of “poor me” gripes and whines for today?

Oh yeah, the medicine.

The docs have me on four different types of meds to treat my eye gvhd:

1. Artificial tear drops.
2. Drops that are supposed to help my eyes produce tears.
3. Steroid drops that are supposed to help suppress and slow down the damage done by the gvhd.
4. And an ointment that I squeeze into the eyes at night to help keep them moist while I sleep.

I could not survive without the artificial tears. I am constantly dropping them into my eyes. It’s a pain in the ass to have to do it, what seems like, every five minutes or so, but it’s a vital pain in the ass. And the ointment feels pretty good. But if the drops to help me produce tears and the steroids drops are working, I sure as hell can’t tell. The only thing I am sure that they do do is make my eyes burn and my vision blur even more than normal.

Here are a couple of examples of exactly how much my eyes burn: 1) My nose is always runny because of the burn. I couldn’t figure it out at first. I thought maybe I was coming down with another infection. Very annoying. 2) The burn from the dryness must really warm up the surface of my eyes because after I drop the artificial tears into them and then put my glasses back on, the lenses fog up a little around the eyes. Seriously.

I dread it when it comes time to have to put the pain producing medicine drops in my eyes. It takes a good hour afterwards before my eyes return to “normal.” Unfortunately, the supposed tear producing drops go in twice a day and the steroid drops go in three time a day; so, for about five hours out of each of my day, I get to self-inflict even more pain on my painful eyes.

Fun.

And you know what scares me the most from all this? It’s that I am having a harder and harder time doing what I love to do so much, and that is this, what I am doing right now.

Writing.

Working on the computer.

As I wrote this pathetically whiny draft on a Word document in a completely darkened room, I literally could not see anything much more on the screen than a glowing blurry mass of white characters. The characters are white because even the light, especially the light, from the computer is torture, so I have to invert the colors of my documents so that the page is black and the characters I type are white.

You should see how ridiculous I look right now as I prepare this…all squinty-eyed and mouth opened, glasses pushed up on top of my thin and disheveled-haired head, face pressed up as close as possible against the screen in a near-failing effort to read the crap that I’m typing.

Expect to see, which I am sure you do, see things with your eyes that is, and expect to see with them even more annoying typos in my junk than normal.

Yeah, it’s all getting really hard.

And stressful.

To be honest, I don’t know how much longer I can do it.

Write, that is.

It is just hurting too much.

And I suppose, as I continue to reduce prednisone dosage, it’s only going to get worse.

And if I can no longer write…

especially after all my life wanting to have the time and ability to be able to write full-time like I have been able to do since all the cancer fun started…

I don’t know what I will do.

But I do know I will be very sad until I figure it out.

But as of now, I do not have it figured out.

Because all my lack of senses…

makes no sense to me, whatsoever.

I mean, come on.