Here’s to blood in the eye…

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.
Continue reading “Here’s to blood in the eye…”

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An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters

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].

Continue reading “An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters”

The Purpose of Pain

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.

Continue reading “The Purpose of Pain”

My Chemo Brain Counter-Offensive

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:

Cards Against Humanity
 
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.

 
 

The Power of About

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.

On why I choose to refer to those who help fund my film as “Donors”…

Admittedly, with these newfangled campaign funding sites such as Indiegogo and Kickstarter, where they have their “Backers” or “FUNders” or whatever else they call those who give money to a money-raising campaign, me referring to my supporters as “Donors” seems a bit anachronistic.

However, there is a very important reason as to why I do.

It is, perhaps, a term the most near and dear to my heart…

For, it wasn’t a “Backer” who was willing to sacrifice her time, effort, and self for someone she didn’t even know…

It wasn’t a “Backer” who had to take off work, find her way to the hospital, prepare herself mentally for an operation, sign all the forms, wear the silly patient outfit…

It wasn’t a “Backer” who had to endure the days of pain and discomfort caused by the operation…

And it wasn’t a “Backer” who blessed me with her bone marrow.

She was a Donor.

A Bone Marrow Donor.

And she saved my life.
 

Please consider becoming such a selfless and life-giving Donor as is mine.


 

BONE MARROW DONATION FAQS

 
 

HOW NOT TO DIE: In 13 Easy Steps

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…

Continue reading “HOW NOT TO DIE: In 13 Easy Steps”

If You’re Here You Must Be Sick…

(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.

No Sense, Whatsoever

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.