If I had been given a 14% chance of living to five years after my Lung GVHD diagnosis instead of a 13% chance, I would have then had to call my little self-help book HOW NOT TO DIE: In 14 Easy Steps instead of 13.
And as the additional step to keep one alive, I would have added “Get Mellow,” because I have learned throughout my years that life is stressful — it is even more so when your health fails you. One has to take action to keep it cool or the stress just compounds the damage.
In addition to prayer and meditation, I listened to many different varieties of relaxing music to get and stay mellow. However, once I found this Tibetan Bells video it became The One and Only.
It’s been a while since I’ve listened to it.
But, seeing how the stress levels seem to be rising…
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… based on your very kind, honest, and funny feedback to my last post, it appears that Cards Against Humanity, while being fun and completely aligned with my temperament, may not be the game best suited for building up my brain muscle.
I know there are several companies out there now that say they have games and apps that will improve one’s cognitive function and may hold diseases like Alzheimer’s at bay. However, those companies were pretty much debunked by a group of neuroscientists with this.
The good news is that there may actually be one game out there that does improve brain function.
From the LA Times:
If you’re intent on keeping dementia at bay, new research suggests you’ll need more than crossword puzzles, aerobic exercise and an active social life. In a study released Sunday, researchers found that older adults who did exercises to shore up the speed at which they processed visual information could cut by nearly half their likelihood of cognitive decline or dementia over a 10-year period…
The study the data was drawn from was conducted by the National Institutes of Health’s National Institute on Aging.
The game used in the study found to be effective is called Double Decision.
Of course you have to become a paid subscriber to play the game. If you pay monthly, it costs $14.00. If you pay annually, it costs $8.00.
A monthly membership to Golds Gym costs around $25.00 a month.
I am not yet sure if I am going to subscribe to play the game but I am sure, based upon your feedback and my research, that muscles, brains or otherwise, are expensive to build and maintain.
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.
These moving images were selected from the results of a search I did on the term “PTSD” through foter. Attributes and rights can be found in lower right corner of each image.
Peace be to the sufferers and those who care for them.
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.
