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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:
bone marrow biopsy
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…
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.
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.
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.
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.
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.
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.
To celebrate the one-year anniversary of my bone marrow transplant yesterday, the wife and I partied down with my ophthalmologist for my quarterly eye exam. Okay, an eye exam is not much of a party, but since the results were good—my eyeballs are GVHD and infection free—I’ll take the eye exam over a party-hardy party any day.
While the results of the exam were good, it didn’t come without its hassles. The worst part about it, after the hour-and-a-half wait to see the doctor, that is (What is it about doctors that they think they can keep us waiting so long? Don’t they realize that—ah…don’t even get me started about doctor etiquette. We’ll save that rant for another day.), was having my pupils dilated so the doc could check for CMV and other infections and then having them numbed and stained yellow so she could perform a Glaucoma Test.
In addition to being blinded by all of the light my dilated pupils were sucking in, I had yellow fluorescent DayGlo-looking crap leaking out of my eyes all day long. I looked like some squinty, jaundiced-eyed mutant. In fact, couple my yellow fluorescent eyes with my big ol’ pumpkin head and I looked like I could have starred in one of Maurice Sendak’s books.
Speaking of DayGlo, I’m reminded of a time back in my navy days when I was deployed on some ship, I forget which one, and we were manning the rails getting ready to pull into some port, I forget where. Everyone was wearing their summer white uniforms for the occasion.
While everyone was wearing their summer white uniforms, not everyone was manning the rails. Many sailors were still responsible for making sure the ship functioned properly, to include the boatswain’s mates and other “deck apes,” as sailors responsible for the care and maintenance of the ship and other real navy stuff that I don’t really have a clue about are affectionately called.
While most of the crew stood around bored, doing nothing except standing and anxiously waiting to get to the pier so the liberty call fun could begin, the deck apes were preparing mooring lines and anchor chains and doing other dirty and greasy tasks that basically destroyed their lily-white uniforms. Too bad for them.
We have a saying in the navy: “Choose your rate, choose your fate.” They’re the ones who wanted to be a boatswain’s mate, ergo, they’re the ones who get the nasty jobs and uniforms that go with it.
It was an early morning port of call and, as there wasn’t much light to see by, some genius came up with the bright (pun intended) idea to have all the deck apes and other stuckies responsible for getting the ship tied safely to pier carry fluorescent yellow glow sticks in their shirt pockets so they could be seen more easily during the working party evolutions.
I think you can see where this is going.
By the time the ship finally got tied up and all those crazy deck apes got finished heaving and ho-ing and to-ing and fro-ing, most of the glow sticks that were being carried around in their pockets had broken and had leaked everywhere. By everywhere, I’m not just talking about all over the deck apes’ grease-and-dirt-covered summer white uniforms, I’m talking everywhere like all over the deck, all over the superstructure, all over the ropes that extended out to the pier, all over just about everything.
When that ship pulled alongside the pier, she glowed like a fluorescent yellow floating lantern. Too bad we all didn’t have some of the yellow glaucoma testing goop to put in our eyes. Just imagine how that would have looked to all the locals to see a fluorescent glowing warship pull in with the entire crew standing around with mad glowing eyes.
Fluorescent glowing warships and sailors with mad glowing eyes. How about that for a new national defense strategy?