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…
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 . And, according to the National Institute of Mental Health, major depression is one of the most common mental disorders in the United States .
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.
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.
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.
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?”
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:
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
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…
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.
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.
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.
Rahm Emaneul, President Obama’s first Chief of Staff, was famously quoted as saying, “Never let a serious crisis go to waste” in response to the financial meltdown of 2008.
I imagine most would regard that quote disdainfully—a little too Machiavellian for their pleasant palates, perhaps.
But you know what? It is that exact mentality towards life in general that I have tried to apply to my life over the years, and I have been trying even harder ever since I was diagnosed with cancer and lung disease.
Because let’s face it, regardless whether your palate prefers pleasantries or not, the saying that we all know, every single one of us, that expresses so well about the horrible inevitables that life sometimes trips us up with is not “Flowers Happen!” or “Perfume Happens!” No, the saying we all know and have probably even declared from time to time in our sometimes horribly inevitable lives is:
And do you want to know why we say it?
That is a rhetorical question because I know you all ready know.
We all know the answer because no matter how hard we try, no matter how much we study to get good grades, no matter how many hours we put in at work to make the money that we use to build our little nests for which to lay in our little eggs, no matter how well we plan and believe we are prepared for all the horrible inevitables we find in our paths, sometimes life can really stink.
And sometimes it can really, really stink. Sometimes life can be so smelly our noses cannot even become desensitized to it. Sometimes the smell is so bad it seems like it has become our permanent atmosphere. And in order to survive, we have to breathe it in no matter what, knowing that each breath we take is poison and will make us gag, or even kill us.
Now that is one stinky life, in my blurry view.
Fortunately for me, one of the side effects from all of the shit that has been happening in my life lately is that I lost both my sense of smell and taste.
Pretty handy when life smells so badly that you can almost taste it.
Shit happens. Yes it does.
Another less offensive way to those whose sensitivities are easily offended, and less poetic, too, of saying the same thing would be to say that life is nothing more than moving from one crisis to the next.
I guess how we manage life, then, is dependent upon how we define and deal with crises.
I am not sure how you define and deal with yours, but I define my crises as “inevitable opportunities” and, like I all ready more than alluded to with the title of this article, I deal with them by exploiting the hell out of them.
For instance, this blog is nothing but a pure and simple exploitation of the biggest crises that I have ever faced in my life.
I have been exploiting the hell out of my cancer and lung disease as much as I can. Hell, I tell you exactly as much in my cheeky, self-infatuated, hand-written blurb about me under my obviously intentionally depressing looking picture of me, used only to get you to feel sorrow for me so that you will be more compelled to read my exploitative writings.
But, there’s more to the exploitation than that.
I may sarcastically say I am exploiting my disabilities by trying to get you to feel sorry for me, but what I am really doing by all that nonsense is attempting to cope with my insecure feeling of trying step out in my new life as a writer and an author. It’s all pretty scary for me.
What I really mean when I say I am exploiting my disabilities is that I am trying as best I can to take advantage of the opportunities my crises have provided.
And the opportunities are many.
Do you think I really would have been able to pursue my life-long love of writing as aggressively as I am doing now had I not become stricken with cancer and then a chronic, debilitating lung disease?
Do you think I really would have had the time to share each day and grow in partnership and friendship and love with my wife and children had I not become stricken with my diseases?
I think not, so I am exploiting the hell out of my disabilities by waking each day looking for new ways to love more and to be more loving and to continually grow as an individual.
I could give many other examples of how exploitative I am and how I am not letting my crises go to waste, but these will do for now.
And sure, sometimes the smell of the crises in my life are so overwhelming to me that I become numb and despondent from the smell, but those days, too, are nothing more than smaller crises that must be dealt with in the same manner as all the others: by realizing that no matter how hard I try to be positive and productive, sometimes it—my life—will just hurt too much and I am going to become deeply depressed and I am going to feel so sorry myself for being so unlucky and I am going to feel so resentful towards you for being so lucky and I am going to sit in my cocoon-like chair and let myself sink into a almost inescapable (so far) black hole of depression.
It happens. I get depressed. And I realize it will continue to happen to me from time to time until a cure is found for my lung disease.
But I accept that it will happen.
And when it does, I will deal with it by exploiting the hell out of it.
Oh, by the way.
Now that I got you feeling sorry for me…
How about reading [download id=”7″] and letting me know what you think of it? ;)
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?
The tug of war between my leukemia oncologist and my Graft Versus Host Disease oncologist continues. As a reminder, when I met with my attending oncologist on March 24 he kind of got a little excited when he saw how high my liver counts were, since high liver counts are an indication that GVHD is flaring up in the liver. He immediately put a call in to my GVHD oncologist to see if he could get the specialist’s concurrence to either put me on an additional treatment or if he could raise the dosage of my current steroid treatment. The GVHD oncologist has the final say on all things GVHD as they relate to me and he wasn’t too concerned with the high counts, but he did want to see me in a week to see if the counts are trending up.
The wife and I met with the specialist on Friday, April 1, 2011, and I must say, it was one of the most informative consultations we have had during my entire cancer experience. A lot of information, both good and not so good, was passed.
First, the good news:
The best thing about the appointment was that we learned that my liver counts went back down.
From the beginning of my care with the GVHD specialist, which began the first week of November 2010, he has been consistent in focusing on the GVHD in my lungs and less so with the GVHD anywhere else. In fact, he said if it weren’t for the GVHD in my lungs, there would be no reason for me to even be seeing him. But he did say that had my liver counts continued to rise he would have taken pause to perhaps consider additional treatment for liver GVHD.
But, as it is, the counts went back down so all’s good for now. As a comparative, here are the results of my last two blood tests for my liver: (Read: Component, Low Range, High Range, Range Units, March 24 Lab Results, April 1 Lab Results):
DIRECT BILIRUBIN, 0.0, 0.4, mg/dl, 0.3, 0.3
ALKALINE PHOSPHATASE, 30, 120, U/L, 173, 164
ASPARTATE AMINO TRAN, 0, 37, U/L, 100, 70
ALANINE AMINO TRANS, 0, 40, U/L, 263, 184
The doc me that because of all the medication I am on and because my body will be fighting with my new marrow for the rest of my life, I can expect that I will always have some form of GVHD (in addition to my lung GVHD which is incurable and irreversible), be it skin GVHD, liver GVHD, eye GVHD, or others, and that my counts will always fluctuate up and down. According to the specialist, when it comes to reacting to blood counts, the key is looking for trends over time.
When the wife asked him why my attending oncologist wanted to immediately put me on additional treatment of either Cyclosporin or Tacrolimus because of the high liver counts and the GVHD flare ups in my eyes and on my skin, he scoffed and replied that is because my attending oncologist is a leukemia oncologist, implying that he, as both a leukemia oncologist and a GVHD specialist had a deeper understanding of how to manage my treatment. Of course, that is what one would hope from a specialist, but it is funny to see how competitive, and sometimes snarky and rude to each other, these Johns Hopkins doctors can be.
He went on to say that there was no way he would want to put me on either one of the drugs that my attending oncologist recommended because they are both so highly toxic that they would probably end up doing more damage to me than repair. He feels that I am already having to deal with enough toxicity from my current treatment plan.
Which brings us to more good news: We decided to lower my daily Prednisone dosage from 60 to 50 milligrams per day.
If you have never taken predinisone before, lowering the dosage by 10 mgs might not seem like so much; but in regards to this drug, 10 mgs is a lot. Lowering the dosage now is somewhat ironic seeing that a month ago, I was feeling so crappy that the wife and I were actually lobbying to raise the dosage in the hopes that it would get me back under control. Not much has changed in regards to how crappy I feel, but the specialist has made his point to me that this is just how my life is going to be from now on and it is better to get used to it now instead of potentially making things even worse down the road by adding even more toxic medicine into my treatment. I asked the specialist why not go ahead and drop me down to 40 mg, since he had always dropped me down 20 mg a pop until I got down to 60 mg. But he was concerned that dropping it by 20 mg would be too drastic and might send me back into the acute stage of my GVHD.
So, 50 mg it is.
I started with the 50 mg dosage of prednisone on Saturday, April 2, 2011. By Sunday afternoon, because I was experiencing achy joints and sore muscles, I began suspecting the onset of withdrawal symptoms from the lowered dosage. However, compared to the extreme withdrawals I went through after the first phase of my treatment back in February 2010 when the geniuses stopped me cold turkey after taking 180 mg of prednisone for two months, what I was experiencing this time was nothing. And as of now, noon Monday, April 4, I don’t notice any withdrawal symptoms at all.
My hope is that the lower dosage will have more of an effect of lessening the miserable side effects and less of an effect of increasing the symptoms that I’m taking it for. That is a confusing way of saying that I hope that the lesser dosage will improve my mental state, reduce the size of my big head, improve my vision, and lower my risks of diabetes, among all the other side effects, and, I hope that it doesn’t exacerbate, or worsen, my GVHD and my neuropathy.
Only time will tell.
The final piece of good news is: The specialist has no problems at all with me adding caffeine to my diet.
This is about the only area where both my attending oncologist and the specialist are in agreement. They both think that caffeinated coffee poses minimal risk to my liver and agree that if I feel that it is helping me mentally, then I should drink away. And believe me, I shall thank you very much.
I have noticed that, as predicted, it seems that my body has gotten used to the caffeine and I don’t seem to be responding as positively to it as I was when I first started drinking caffeinated coffee again. But regardless, whether or not it is helping to regulate the effects the prednisone has on my mental condition, I like drinking coffee so that in and of itself is enough for me.
Now, for some of the not quite as good news.
My days of flying on airplanes are pretty much over. The specialist didn’t say that I couldn’t fly, but he did say that flying, at a minimum, would be a stressful, uncomfortable endeavor and at a maximum, could be deadly.
Because of the condition of my lungs and of the unpredictable air pressure in airplanes, I will always need to bring a portable bottle of oxygen with me whenever I fly. He said long flights, like a fourteen-plus-hour flight to Japan for instance, would be very hard on me and I would really need to carefully consider the risks versus the rewards before attempting such a flight. I also need to consider where I am flying to, even on shorter flights. He said he could pretty much guarantee that I would end up in the hospital if I tried to flight to a high altitude place like Denver.
Plus, because I cannot get my vaccines as long as I am on prednisone, which will probably be for forever, I should not fly to any country where there is risk of exposure to polio or tuberculosis or any of the other diseases that we are vaccinated for.
More irony: My daughter just landed a sweet gig as a flight attendant for Virgin America Airlines. One of her perks is that her parents, c’est moi, can fly for free to just about anywhere in North America.
Ha ha ha isn’t that just so funny…
Yeah it is.
Another bummer thing I learned/was reminded of was that I need to continue to stay away from dirt. Again, because the prednisone degrades my immune system so much I really have to be careful about catching cooties. So, essentially, there will be no gardening or yard work for me…in theory anyway…or doing anything else where there is a risk I might breath in some fungal or other kind of infectious nastiness.
I guess the risk of infection continues to be my biggest immediate threat, and will continue to be so until the deterioration of my lungs gets to the point where lack of oxygen becomes critical. Who knows when that will happen.
All in all it was a very informative appointment, one that helped to clarify the direction that I’m heading. Not all of the information was what I wanted to hear, but at least it all was as definitive as any information that I have received since the beginning of all this cancer madness. I guess that is about all I can hope for: clarity and definitiveness of purpose.
Other than a follow up with my eye doctor on April 7, the next big event is my trip to the National Institute of Health in Bethesda, Maryland. The wife and I will be staying at a hotel for the week while I at poked and prodded and retested as part of my participation in a study to try out a new GVHD drug and a general study concerning GVHD in general. The wife and I are really looking forward to it. Hopefully the new drug will slow down my lung deterioration better than the prednisone is doing.