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:
“SHIT Happens!”
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? 😉
When meeting with someone with whom you are consulting and seeking advice from and relying on for critical information, someone like your doctor, it is my belief that you should not leave that meeting without asking him or her at least one question.
Funny thing about those paradoxical little buggers, though…questions, that is, not doctors…is that it seems that the more we know about something, the easier it is to formulate and ask questions about that something; yet, the less we know about it, the harder it is for us to come up with questions to ask about it.
Well, that’s usually how it is for me, anyway.
And I don’t know about you, but for me, even sometimes at my old and calloused age, and no matter how many times that rusty, dull saw “There’s no such thing as a stupid question.” is drawn back and forth across my grainy, knot-holed brain, if I feel stupid about asking a question before asking it, then it is really hard for me to get up the gumption to get the stupid question out.
I don’t like Stupid.
It hurts too much.
And, at least for me, far too often.
Oh, and brother…and sister…let me tell you, you should have seen what a nervous mess I was in high school whenever I wanted to ask a question but felt it would make me look stupid(er) if I asked it, which pretty much encompassed just about any question I wanted to ask all throughout high school.
Not pretty.
I am not so bad about asking them now because, long ago, I embraced and (as is evident by all of the ridiculous nonsense that is going on in this ridiculous blog) even began exploiting my ridiculousness, right along with my insecurities and fears…and yes, even my infirmities.
Over time and after a lot of uncomfortable suffering, I have learned that the best way for me to face and overcome all my insecurities, fears, and just about anything else that makes me feel foolish or awkward, is to break them down in my mind as far as I possibly can, no matter how serious or sad or sickly they may be, right down to the ridiculous.
I mean, come on! How ridiculous is it that a six feet five-inch, former 230 pounder, former somewhat burly and excessively hairy self-proclaimed (remember now, I said former) “Manly man” could be afraid to ask a simple question, regardless of how stupid it is?
Pretty frikkin’ ridiculous, that’s how!
And that’s all there really is to this breaking-things-down-to-ridiculous thing.
But in defense of my former self—no matter the size or strength or amount of body hair one has, Stupid, armed only with gnawing and piercing barbs of doubt and indecision, will whip just about anyone’s stupid ass just about every stupid time.
But back to my ridiculous attempt at explaining how ridiculous just about everything serious in life can be…come to think of it, I should change the title of this ridiculous blog from here is where it hurts to TAKE NOTHING IN LIFE SERIOUSLY…SERIOUSLY!
Nah, that would be a seriously ridiculous thing to do, wouldn’t it?
Anyway…
And once I have broken down my insecurities and fears and, yes, even my infirmities, to their most purest state of ridiculousness, I then can happily, and often giddily, laugh at them and ridicule them for their ridiculousness, and then exploit the bloody hell out of them like I so frequently do, mostly right here on your friendly neighborhood “here is where it hurts” ridiculous blog.
So yeah, I do not really have a hard time asking stupid questions anymore.
Howeeeever…depending on the situation or on whom I am directing the stupid question to…
Every once in a great while, I just might have a hard time getting the gumption up to get that stupid question out.
Stupid me.
*
When I was diagnosed with cancer, a form of leukemia called Chronic Myelogenous Leukemia in Blast Crisis with the abnormal Philadelphia Chromosome (a real tasty mouthful, huh?), everything happened so quickly and the chemo and the steroids and the other drugs were pumped into me immediately and so often, and because I knew so very little about cancer in general and CML in particular, not to mention all the procedures and protocols and pokin’ and proddin’ that it takes to treat it, either I did not or I could not ask the questions I now feel I should have asked about something as devastatingly important as was what I was then going through.
All I could do, as I pathetically lay in my hospital bed while wrapped in my chemo and drug-induced blanket of fog, which I would occasionally and nervously peek out from under to stare blankly back at all the surreal, masked faces of my family and friends and doctors and nurses and social workers and cleaning staff and food attendants and anyone else who floated in and out of my room at any given time and who whose gracious mask-muffled encouragements sounded strained and distant, while their eyes spoke loudly with the voice of their heart of their concerns and their uncertainty and their fears, was to feel deeply and pitifully sorry for myself.
That constant sorrow took just about all of my energy, leaving little for the care or concern to ask the questions I probably should have been asking.
To cope with my lack of care or concern, and so that I could focus on feeling sorry for myself, I kept telling myself that I had little to worry about regarding this cancer thing because I was being cared for and treated by THE Johns Hopkins University Hospital, which was repeatedly voted as the number one health care facility in the nation. At least that is what all the self-promoting, self-congratulatory posters that were plastered everywhere advertised.
Well, as we all know, regardless of an organization’s reputation, even if it is one of sustained superior performance and results such as JHUH says of its reputation, they are still filled with a fallible and fickled species called humans who, while known to do some pretty fantastically wonderful things from time to time, are also known to do some pretty ignorant and stupid things just about all the time.
So, regrettably, in some part because I probably did not assume enough responsibility and make enough effort for my care early on to ask the questions I probably should have asked my doctors, and, in more than some part, because of a few stinkers of medical professionals who were involved in my care and treatment from just about the beginning of my cancer diagnosis and who, I firmly believe, excelled at mismanaging my said care and treatment in an exceptional manner, I feel that my health condition is worse off now than it should be as a result of our collective “efforts.”
And that is how I have come to my belief that one should never leave the doctor’s office without asking at least one question.
Here’s a quick question for you:
What do you call the medical student with the lowest GPA in his or her graduating class?
Doctor, of course.
And here is another revelation that dawned on me during all of this cancer and subsequent Graft Versus Host Disease, stuff of mine:
Doctors, as smart and highly trained and impressive and sometimes, not always, but sometimes, intimidating and overbearing as they are, are, fundamentally, only high paid consultants.
When we get right down to it, they can only make recommendations and give advice, they cannot decide for us.
Only we can decide what is best for our health.
And for us to decide what is best for our own health, we must have as much relevant information possible to make the best decision possible.
And as smart and highly trained and impressive as most of our doctors truly are, they cannot yet read our minds.
For them to be the best consultants to our care and treatment they can be, and for them to be able to provide us with as much relevant information possible so we can make the best decisions possible, and regardless whether they want to or not or don’t have time to or not or are too tired to or not or whatever or not, we must ask them the most relevant questions we can ask.
Some of these relevant questions will be deep and probing, and others will seem shallow and stupid, but all must be asked in order to prod and pull the genius-matter free from our doctors’ very big and very expensive brains so that it can be reconfigured and presented to us in a way that we mere mortals can understand.
Asking relevant questions to very smart people like doctors, is tough, especially if these doctors are specialists. These stereotypicallybedsidemannerless barons of the brains are so smart, in fact (and in fiction, sometimes, too), that they probably have forgotten more about their area of expertise than we could ever attempt know, even if we factor in the internet. And when we do not know much of anything at all about the subject that we want to or need to know about, it is even tougher to ask relevant questions. And when we are afraid that by asking a question it might make us appear stupid, which may just be the case, then that is just about the toughest question of all to ask.
But, we must find, or fight, our way through all that toughness.
And if, even after we have gotten over our fear of looking stupid, we still cannot for the life of us come up with one single relevant question to ask, then at a minimum, at the very least, we should ask:
“Hey Doc, if you were me, what questions would you ask you to help you, er, I mean…me?,” Whoa boy, now this question has me confused.
Let’s try running through that question again.
“Hey Doc, since I cannot think of any relevant questions to ask you, how ’bout you tell me what questions I should be asking you so that, with your answers, I will be able to make the best health care decisions possible?”
Or…something similar, but hopefully much less discombobulated, to that effect.
David Grohl
The Foo Fighter’s new song “Walk” friggin’ rocks and, like most inspirational works of art do, it motivates me into action, particularly because some of the lyrics really speak to how I feel about what I have been dealing with this past year and a half and will continue to have to deal with for the rest of my life.
“Learning to walk again…,” lyrics from the song’s chorus, speaks specifically to what I have gone through while dealing with my neuropathy, the side effect from all of the chemo I got juiced up with before and after my bone marrow transplant. Because of the nerve damage, I literally have been learning to walk again, this time with numb, unresponsive lower legs and feet. Not having complete mobility has definitely given me a new perspective on the basic physical dynamics of living and it has taught me to not take anything for granted.
And as I think about it, “Wasting Light,” the title of album that “Walk” is on, also speaks directly to me. To paraphrase what David Grohl, the lead singer of the Foo Fighters, says at the end of “Back and Forth,” the recently released documentary about the history of the band: Grohl wanted to name the album “Wasting Light” because the older he gets the more he appreciates how short our time on earth is and how important it is to live his life as fully as he can within the limited time he is given.
I had been feeling pretty crappy the past week or so and my head had swelled up even more than usual. This is what I saw when looking in the mirror.
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.
So…I may have been talking tongue in cheek for much of my Caffeine Therapy article, but I was serious as a heart attack, and we all know how serious those Widow Makers are, when talking about the positive impact that caffeine has had on my mental state of mind. Before I started drinking coffee I never knew where I was going to be mood-wise. Some days I would wake up Dr. Jekyll, some days Mr. Hyde. It was very stressful. After I started drinking coffee again, or, more specifically, after I added caffeine to my diet again, life was much more normal, predictable, and pleasant for me…and the rest of the family. While I still get stressed out and tense relatively easily, even while caffeinated up, it isn’t nearly has bad as it would get while I was caffeine-free.
Consequently, when I visited the doctor for a checkup from the neck up…and down…this past Thursday, I was looking forward to finding out how adding caffeine to my diet has impacted my liver, since that is where it’s metabolized.
Well, the lab results showed that my liver component counts were pretty high. Here are the numbers (Read: Component, Low Range, High Range, Range Units, My Lab Results):
DIRECT BILIRUBIN, 0.0, 0.4, mg/dl, 0.3
ALKALINE PHOSPHATASE, 30, 120, U/L, 173
ASPARTATE AMINO TRAN, 0, 37, U/L, 100
ALANINE AMINO TRANS, 0, 40, U/L, 263
Now, I have no idea what all of these different components are, but I do know the docs look at them to determine how my liver is doing. I asked my oncologist if he thought I should stop drinking coffee because the counts are so high and he said no. He wasn’t worried about the impact of caffeine on the liver. In fact, he agreed with my assessment that it is probably the caffeine that is positively stimulating me mentally while suppressing the negative psychological impact of all the other drugs and stress from my inflictions.
He was, however, worried that the high counts indicated that Graft Versus Host Disease was flaring up in my liver. After examination, he also assessed that it was flaring up again in my skin and eyes. He wanted to take some “preemptive measures” (his words) by either raising my steroid dosage or by trying another drug called Cyclosporin. But the way things work with my care and treatment, it wasn’t his call. All decisions relating to my care that involve GVHD are made by a different oncologist, one who also is a nationally renowned GVHD specialist and he was not quite as concerned about the elevated numbers as the other oncologists on Team Kurt. In fact, the wife and I had lobbied the GVHD specialist to raise my steroid dosage the last time we saw him over a month ago. I could tell even then by the way that I had been feeling and how my skin had looked that the GVHD was flaring up. But the specialist’s primary concern is with the GVHD in my lungs and not so much with the GVHD anywhere else. According to him, the other areas are relatively minor concerns compared to the lungs and were no cause for alarm or any additional action. A month later he apparently still feels the same.
I’m guessing the GVHD doc wants me to focus on my upcoming week-long visit in April to the National Institute of Health where I will participate in a study to get FDA approval for a new Lung GVHD treatment.
Still, the other oncologist wants me and the wife back next Thursday so we all, to include the GVHD specialist, can get together and further discuss this GVHD flare up in the liver and elsewhere.
Even now, nearly a year and a half later, it still seems that my whole experience with leukemia isn’t real, that it just could not have possibly have happened to me.
Something of this magnitude only happens to other people.
I know what I am experiencing is real, but it is just so hard to accept because the consequences are so big, so out of this world. My mind just cannot get itself all the way around it.
And I feel the same way about my lung disease, perhaps even more so because the data is so sobering.
And I feel exactly the same way about the disaster in Japan.
If you have spent any time at all on this blog, you know that Japan is just as much a part of me as is my arm, or kneecap, or heart, or any other part of me.
Just as with the leukemia and the lung disease, or as it would if I were for some reason to lose an arm, my mind is just not accepting the fact that so much tragedy has fallen on Japan.
The horror that I am witnessing on the television and the internet cannot possibly be happening to the country I know so well and love so much.
Something of this magnitude only happens to other countries.
Before the cancer I had been a pretty heavy coffee drinker. I drank it not only because I was addicted to the caffeine and the boost it gave me, but also because I really do enjoy the taste of a well-brewed cup o’ joe. A good cup of coffee, just like a good glass of wine, really does [cliche alert!] make life worth living.
I was a late bloomer as a coffee drinker. Though I always loved its smell growing up—I still have vivid, fond memories of the bubbly coffee percolator sounds and the delicious coffee smells that I woke to every morning as a child—I found its taste repulsive and the heated spoiled crap breath that all coffee drinkers blast out even more so. I didn’t want to be complicit in that.
But after high school I joined the navy and, like an idiot, immediately started smoking cigarettes, a habit that previously had disgusted me even more than drinking coffee. If I could force my body to accept and then to crave and then to fervently demand a steady intake of toxic death fumes, then it would stand to reason that hooking myself on coffee couldn’t be too far behind.
Actually, it took another six years.
What finally got me to join the Caffeine Club was the twelve-hour watches that I had to “stand” while stationed aboard my first ship.
I had stood twelve-hours watches all during my time in the navy prior to transferring to the ship, but those watches had always been in large, noisy, bustling communication centers with teams of sailors, which meant that there was always someone around to talk to and to keep me awake during the brutal night shifts. But on the ship, I stood my watches in a quiet, closet of a room by myself and boy could those midnight watches, or mid-watches as the navy jargon goes, get boring.
Thus, in 1989 began my addiction to coffee.
Coffee and Cigarettes. A heavenly match made in hell.
Fortunately, I was able to kick the cigarette habit about a year later.
But I drank coffee like mad until my cancer.
While I initially started drinking coffee as a crutch to get me through the night, I still hated the taste and had to load in piles of cream and sugar to try to cover it up. Over time, however, I eventually acquired a taste for the bean. But my passion for the bean didn’t really come until years later after my father casually remarked that to really enjoy coffee, it needs to be drank black. Unpolluted, so to speak.
So I tried it black. And, like most fathers are, he was right. From then on, I no longer was a man who preferred his coffee “sweet and blond” but one who preferred it “bold and black.”
I drank it that way pretty hard for twenty years.
But when the cancer struck, I had no qualms about quitting. In fact, I didn’t decide to quit, I just did without even realizing it. I guess my subconscious took over after they started pumping me full of chemo and steroids and other crap and spared me of any coffee or wine cravings during my year-long treatment and recovery.
Throughout my years as a coffee drinker prior to cancer, every once in a while I would try to get healthy and ween myself off of caffeine. Not that caffeine is a particularly unhealthy addiction as far as addictions go; but it still is an addiction and deep down, I guess always felt a little uneasy about my dependency on it.
I don’t remember exactly when the last time was I tried to stop consuming caffeine, but I do remember how much it hurt: the eyeball shattering headaches; the total body aches; the nasty moods.
I remember being stuck in traffic for a very long time once during my last attempt at the last weening process and having my legs ache so badly that I thought I was going to have to pull over to the side of the beltway and have the wife come pick me up. I was jonesing bad. I struggled on, but as soon as I got out of traffic I drove directly to the store, bought two cups of coffee, downed one right in the parking lot, and begged forgiveness and mercy from the other one as I lovingly nursed it all the way home.
I probably went through the same kind of withdrawal pain and discomfort when I quit drinking coffee after the cancer diagnosis, but there was already so much other pain and discomfort going on from the blood clots and the treatment that the withdrawal stuff just mixed right in and went unnoticed. Thankfully.
And for over a year during my treatment and recovery process I had no urge whatsoever to start the habit back up. Until recently.
When the urge returned, it returned with a vengeance.
I started drinking it like I never stopped. There was one big difference when I started back up though:
Decaf.
I know, I know. Drinking decaffeinated coffee is like having sex without the climax. What’s the point, right? But, I figured, since I have to take an overload of drugs every day that are already throwing my mental state out of whack, it might be best not to include a stimulant like caffeine into the mix.
So it was decaf for the first couple of weeks.
Until the first time I ran out of it and mistakenly bought a bag of the real stuff.
Why would Starbucks make the bag green if it wasn’t for a decaffeinated coffee?
One good thing about drinking decaf coffee is that I can drink it in the evenings without having to worry about it cranking me up for an all-nighter.
I made the first cup from the mistaken identity bag around 7:00 pm. I think I finally fell asleep around 6:00 am the next day. By 2:00 pm, I was back at the store buying real decaf this time, which was not packaged in a green-themed bag, by the way.
What’s up with Starbucks thinking they can set their own standards?
I have always been very sensitive to drugs and other foreign substances. For instance, it’s hard for me to use morphine or codeine as pain killers because of this sensitivity (remind me later to write an article about my first experience with morphine…ugh).
Even caffeine in the smallest of amounts can overly stimulate me (it’s not often I get to say that out loud) to the point of annoyance to anyone who happens to be around me.
My daily cocktail of drugs are no exception to this sensitivity rule.
Evil Prednisone
The biggest culprit from the cocktail mix for jerking me around is the prednisone. Prednisone is the drug of choice, in fact, it’s just about the only choice, to treat Graft Versus Host-related diseases, of which I am suffering from, and for which I am taking the prednisone.
It addition to GVHD, prednisone is also regularly prescribed for many inflammatory-related illnesses, like asthma or COPD. Because of its potency, it is usually prescribed in low doses, around 5 – 10 mg, for short periods of time, around 7 – 10 days, or so.
Well, I started at 200 mg and now I’m down to 60 mg. I’m going on my fourth month and, even though the treatment doesn’t seem to be slowing the advancement of my lung disease, unless there is a new miracle discovery, I will probably will be taking high doses of prednisone for the rest of my life.
Speaking of miracle discoveries, I will be participating in an NIH study in April 2011 for a new Lung GVHD treatment—fingers crossed.
It kind of freaks me out whenever I visit with a new doctor and their eyes widen and mouths drop when they hear that I’m taking 60 mg of prednisone every day.
The reason they react the way they do is because prednisone has a slew of annoying side effects and is one of those drugs where the cure could turn out to worse than the disease. It causes bone density loss, diabetes, sodium retention, water retention, insomnia, moon face (for some reason it makes the body fat accumulate around the face—my head is friggin’ ginormous!), and worst of all, anxiety, depression, and mood swings.
What fun.
Because of my sensitivity to drugs, I seem to be really affected by the anxiety, depression, and mood swings.
You might be thinking, like I would be if it wasn’t me who was the one saying it: Brindley, get over it. It’s all just in your head.
And my response would be: You’re exactly right! That’s what makes it even worse. I do know that it is all just in my head. But I’ll be damned if I can get it out.
The more I can keep my mind actively engaged, the better off I am.
This blog is great therapy.
So are naps.
But sometimes my mind gets stuck in a deep rutted ravine filled with all of my fears and doubts and I can’t get out no matter how hard I try. It really is crazy because even as I am trapped in this dark place, I know that a big reason why I’m there is because of a drug that is supposed to be saving my life.
And once I get stuck there I usually can’t get out until the drug wears off, which is about twelve hours after taking it.
So, the next time I ran out decaf and decided to go to the real stuff, I had to take all of this into consideration. I knew there could be consequences from the caffeine so, to try to make good out of my stupidity for willingly hooking myself back onto something I had not needed for over a year, I had decided to treat it all like an experiment. When drinking caffeinated coffee while taking the prednisone and other drugs, which would be anytime I drink caffeinated coffee, I would pay close attention to how they interact and affect me.
Good idea, right? 😉
What I found is interesting and somewhat promising.
Pros:
Caffeine, like the true stimulant that it is, seems to balance out the negative effects of the prednisone. By drinking caffeinated coffee in the mornings when the drugs are at their nastiest, I do not seem to be feeling as depressed and grouchy.
It seems to be easier to breathe when I take my walks. After some research, I found that caffeine is a xanthine derivate. Xanthine is used to help treat asthma. Maybe this explains why it seems that I’m breathing easier on my walks.
Caffeine is a diuretic. Diuretics make you pee. This is useful for me since I tend to retain water because of the GVHD.
Because of the prednisone, I also retain sodium. I don’t understand all this diuretic stuff enough but it could be a good thing if caffeine is of the type that flushes out sodium. I’ll have to follow up with the doc on this.
Cons:
In addition to the depression, prednisone also makes me anxious and edgy, and increases my heart rate. Adding caffeine into the equation only amplifies that feeling.
Because of my GVHD, I have dry, itchy skin and my mouth gets dry easily. The steroids help, but since caffeine is a diuretic and I’m peeing all the time I get dehydrated quickly, which only exacerbates the dry skin and dry mouth. I have to drink more water to compensate, which means even more peeing. Its a tedious balancing act.
Again, I don’t understand much about diuretics, but I read that certain types flush out a body’s potassium. This isn’t good because prednisone already tends to decrease potassium levels. Need more info.
Because of all the meds I’m taking, my liver is really taking a beating. Since caffeine is metabolized in the liver, I really need to be careful here.
So, to make a long story short… What? Oh…yeah, I see. Too late for that. I guess I got to rambling a bit. Thanks for bearing with me.
In conclusion… better? …my long, rocky love affair with coffee has resumed once again and I find that my passion for the drink is as strong and true as its seductive flavor is bold and addictive.
And now, not only do I drink the brew to fulfill my own selfish desires and dependency, I drink it also to fulfill a broader need, one with an utilitarian, more nobler purpose—I drink it in the name of medical research.
Just think, what started out as an aide to help me better defend my country during my navy years (that sounds much better than calling it a crutch to help me stay awake during boring mid-watches), may turn out to be the impetus behind a cure for a very serious mental health condition.
Now, whenever I drink coffee while strung out on prednisone, I may be one cup closer to understanding the longterm synergistic and psychological effects on the brain from simultaneously consuming large quantities of both stimulative and depressive agents over long periods of time.
My research is going to have an extremely significant and beneficial impact on the entire mental health community. Better lives will be lived because of it.
Yeah, that’s all a bunch of BS, I know (see Disclaimer). But hey, if it helps me to rationalize my pathetic, self-induced dependency on something that I probably shouldn’t be messing with in the first place, why not, right?
Have I mentioned how long it’s been since I’ve had a glass of wine?
Ever since mid-December 2010, I have been getting light headed whenever I stand or lean over. A couple of times I have come pretty close to passing out. The last checkup I had the doc took my blood pressure lying down and it was 135 over 70 something. He then had me stand up and took it again. It was 110 over 60 something. A pretty significant drop.
One of the many side effects of prednisone, the steroid I take to try to stop the deterioration of my lungs, is that it causes sodium retention. Because of this, the wife and I have really been cautious about my sodium intake, trying to keep it as low as possible. The doc thought that my low sodium intake was causing the light headedness so he recommended that I up my sodium intake a bit to see if that helps. I didn’t think it was the sodium and I let him know, but I said I would give it a try anyway since that meant I could eat more pickles.
After having a couple of days to reflect, the doc decided he wanted me to take a Cortisol Stimulation Test, or Stim Test as it’s referred to in the business. Basically, all the test consists of is drawing my blood, testing my cortisol levels, then injecting me with something that stimulates my adrenal glands, and then at the 30 minute and 60 minute periods after the stimulation, drawing my blood and testing the cortisone levels again. Because the adrenal glands were stimulated, the level of cortisone should be higher.
I just received an email from my doc that says: Your Cortisol stim test was normal response. There is sufficient amount of Cortisol, according to the test, to protect you against orthostatic hypotension [dizziness].
That’s good news. However, even after increasing my sodium intake, I still getting dizzy when standing. Any of you smart people out there have any ideas what may be causing this? My gut is telling me it’s just a reaction to the cocktail of medicines I take every day but if you have any other ideas, please let me know.
There have been many o’ mornings throughout my life that I have laid in bed, fighting with the snooze button on the alarm clock, wishing that something would happen in my life that would make work go away forever.
We all know the old saw: Be careful what you wish for because you just might get it.
I was hoping more for…oh, I don’t…newfound riches…being elected king for life on a small tropical island…alien abduction…just about anything other than what I actually got.
But as the new saw goes: It is what it is.
So now what?
Before the lung disease, I was messing around with that leukemia thingy for the past year and it had kept me and my family plenty busy. I was back and forth to the hospital so much and feeling so crappy I didn’t have the time or effort to do much more than sit around, take my meds, and feel sorry for myself.
But just when I was starting to feel somewhat like what I used to feel like before all that leukemia thingy…just when I was beginning to ponder what it was going to be like returning to a normal life (normal meaning back to the daily morning battles with the alarm clock, the cursed commutes, and, of course, work)…just then…without any warning…BOOM…the doctor dropped the bomb on me.
Lung disease.
A lifetime with the constant feeling of slow suffocation.
A lifetime of high, daily doses of steroids.
A lifetime with the constant threat of diabetes and of osteoporosis.
A lifetime with a degraded immune system.
And, by the way, a lifetime of no more work.
I didn’t see that coming.
So much for my dream of helping to build a small company into a megarich, international conglomerated corporation and becoming rich enough to buy a professional sports franchise.
I guess I’ll just have to stash that dream away with my other unrealized dream of becoming an international rock star.
It all still hasn’t really sunk in yet.
I’m only forty-five years old. Regardless of my disease, I plan on hanging around for a very long time.
What the heck is a guy who has reluctantly been holding some form of drudgery…er, I mean, a job…since he first started delivering newspapers sometime around the time our nation celebrated its bicentennial birthday supposed to do with all of his newly “free” time?
What the heck am I supposed to do with myself for the next however many years I have left on this rock?
Well, I do have other yet unrealized dreams.
One of them is to write.
Not just bloggery writing like I am doing right now.
I mean to really write.
To write books.
And not just to write them.
To have them published.
And not just to publish them but to write them in a way that people want to read them.
I want to write in such a way that enables me to be able to proudly call myself a writer…An Author!…and not feel like a creepy, amateurish dork when I do.
So that’s what I’m doing.
I’m writing.
I’ve written.
I’ve written a novel called THE SEA TRIALS OF AN UNFORTUNATE SAILOR.
I’ve written a collection of poetry called POEMS FROM THE RIVER.
They will be available via e-book and pdf on (fingers crossed) February 19, 2011.
You can read a synopsis and first chapter of the book at bojiki.com/book.
But you know what? I wrote most of the novel and the poetry collection before I had all this free time that I now have. I wrote them slowly, sporadically, painfully, over a fifteen-year or so period when I was a working class stiff.
Now that I can fully devote myself to writing I should be able to blissfully write for hour after hour every day, right?
I should be able to crank out a novel every six months, or so, right?
Well, maybe…but, I have quickly discovered that writing fulltime is hard.
I am finding it hard to be disciplined enough to write every day.
It’s hard to sit down with laptop in hand…er, I mean on lap…and to think of stuff that other people might want to read.
I am finding that writing is like…
work!
Back when I was writing while I was still working out in the real world, writing was more like a hobby. I didn’t have to do it. I did it because it was fun…or at least cathartic.
It was fun writing crappy poems and crappy short stories and a crappy novel because I didn’t have to worry about feeding my children from the proceeds of their sales. I could pretend I was a writer without actually having to make the commitment of calling myself a writer.
Sure it stung a bit every time I received a rejection slip from publishers, but who cared. I still had a day job.
But now I have no cover. I have found that writing full time is hard work and I have no fallback position.
Well, I’m on disability so I guess I could always fall back onto the position of doing nothing. Do nothing but sit around, collect my monthly payments, and…
wait…
for…
something…
to…
happen.
Zzzz…
Who the hell wants to do nothing for the rest of your life when you have a once-in-a-lifetime opportunity to recreate yourself into whatever you want to be (provided that whatever you want to be can mostly be accomplished within the confines of your home…and the internet)?
I have declared that I want to be a writer.
And I find that’s it’s hard work.
And now I feel a little exposed.
And a little vulnerable.
And a lot like a creepy, amateurish dork.
But I don’t wish for it to be any other way.
Because we all know to be careful of what we wish for, right?
As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.
Say it: Bronchiolitis Obliterans.
Wasn’t that fun?
I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.
I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.
Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.
Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.
I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.
