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?
[notice]Because I am no longer going to blog at my Marrowish website, I just imported all of its articles, pages, and comments into this site. The following Marrowish article discusses my reasons behind the change.[/notice]
I’ve been thinking about doing this for a while now and now is as good as time as any: I am going to suspend blogging here at Marrowish and blog only at my other site BOJIKI.
I’m doing this for a couple of reasons:
The primary reason is that things have radically changed for me since starting Marrowish back in December 2009: now that the cancer is gone and I have this Lung GVHD/Bronchiolitis Obliteran thingy, things just don’t feel the same for me around here–I feel differently about my relationship with the Lung GVHD than I did with the leukemia for some reason, which maybe I’ll try to explore and write about later at my other site; also, I’ve changed a lot since starting this blog, both physically (I certainly don’t look much like that guy anymore in the banner photo) and mentally–I’m ready to move on.
Another reason I’m doing this is because I’m lazy–I’m tired of managing two sites. I don’t intend on taking this site down, so everything written to date will stay up indefinitely, or at least until the evil Prednisone overlord who resides in my head forces me to take it down. And I will still write about Marrowish-type issues–I will just be doing it at BOJIKI instead (look for the “Marrowish” tag in the Tag Cloud or articles filed in the “Health” Category).
In addition to this site, I am also going to suspend tweeting at my Marrowish twitter account. If you want to follow my health updates, along with any of the other BS I tweet about, like updates about my books and other writings, as well as my musings about current events, you’ll need to follow me at twitter.com/kurtbrindley.
This place, and especially all of you who stopped by here to offer your support, prayers, and encouragement, really helped me cope with some crazy stuff this past year or so and I am very, very grateful for it.
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?
There has been much news lately about how the Transportation Security Authority’s new screening procedures are upsetting the traveling public and, to be honest, all of the whining is getting on my nerves. On the one hand, we demand our government guarantee us a safe, bomb-free air travel experience, yet we don’t want to utilize the advanced technology to help secure this guarantee because of our own fears and insecurities.
What are we afraid of? That some TSA screener is going to get to see us bare and blemished? Come on. Haven’t we all undergone a doctor’s examination? Haven’t we already had to overcome our pretensions and shyness to strip bare in his or her office to receive a truly hands-on, prodding and poking screening in attempt to guarantee our health security? At the airport all we have to worry about is having a remote image of ourselves being seen by an anonymous government employee who has the unenviable task of actually having to look closely at and examine our scanned image in all its glory. Have you taken a good look at us lately? I certainly wouldn’t want that job. So lets get over it. Lets get scanned. Lets get screened. And lets do it with as little delay and complaint as possible so we all can get through the line and to our destination as quickly and stress-free as possible.
Or is it not our insecurities of public nudity so much as it is our fear of the doses of radiation that the body scanner supposedly emits that forces us out of the body scanning line and into the alternate, hands-on, I-love-you-short-time screening line? Come on. Electromagnetic radiations are emanating at us from everywhere and we know it. We are basically being slow cooked regardless of where we are. Heck, we even carry around portable brain cookers in our pockets and purses–they are called mobile phones. What are the odds that getting an occasional body scan at the airport is going to cause us harm? What do we think is going to happen, that we’re going to get…cancer?
Well, maybe we will.
Maybe we won’t.
Who knows, right? I sure don’t. I have no idea how that airport body scan, or the x-ray from our annual checkup, or our microwave oven, or our mobile phone, or our televisions and computer screens, or the power terminal that we used to play around when we were kids, or all of the other many environmental and life hazards like pollution, in all its forms, and stress, in all its forms, will impact our health.
I don’t know…but I wish I did. I wish I knew how all of the radiation and pollution and stress impacted my health over the years. Does any of it have to do with how or why I became inflicted with leukemia? I want to know.
My not knowing is not from not asking, that’s for sure. When I first was diagnosed with leukemia, I asked just about every oncologist who came within grabbing distance of my long reach what exactly caused my disease. Their pedantic responses, often laced with undertones of condescension and self-serving gravitas, sounded more like a jargon-laden abstract of an article published in an exclusive, onocologists’s-eyes-only medical journal than a clear and thoughtful response based soundly upon their careful study of all of my specific lab results compared against my very singular and personal condition and lifestyle. I soon tired of their tedious and inconclusive answers and stopped asking them.
Perhaps I am being too hard on my oncologists. I have come to learn this past year that one would be hard-pressed to get a definite answer to just about any question asked to them regarding cause or diagnosis to any infliction, whether its concerning my leukemia in general or any of the multitude of subsequent ailments I have experienced as a result of my treatment. It seems that every response is heavily guarded by caveats and suppositions. Maybe they have become so conditioned by fear of litigation.
So I began my own quest for conclusiveness. I cruised up and down the internet so many times in search for answers that I felt like a cross between Sam Spade and Clu. I searched through all of the search engines. I searched through WebMD. I searched through NIH. I searched through CDC. I searched through WHO. I even went retro and searched through my hard copy series of Encyclopedia Britannica and, in the end, the only real answer I came up with to how or why I became inflicted with leukemia is…it depends…which is essentially the short version of the long-winded blather my oncologists gave me.
It depends. Such a disheartening answer to such a profound question.
But there it is so I guess I have to let my oncologists, and the entire medical community for that matter, off the hook for not being able to provide me with a definite answer.
Based upon what I now know, the cause of leukemia may depend on so many different variables—one of which is NOT hereditary, surprisingly—that it really is impossible to pinpoint the exact cause of why someone becomes inflicted with it. But, there are environmental and lifestyles conditions that may increase one’s chances. With this knowledge, I have narrowed the cause for my infliction down to the following few possibilities:
Pollution. I have no idea how much pollution I have consumed in my life; but I do know of times when, because of the work I did in the navy early on in my career, I had to breath in large amounts of ash and dust for up to eight hours a time on many occasions. I would cough up and blow out black gook for days after each occasion.
Asbestos. I have no idea if or how much asbestos I have consumed in my life; maybe none at all; or, maybe enough of the tiny particle stuff drifted down from the insulated pipes in the old school and office buildings I used to labor in to impact my health. There was a time in the navy, however, when I may have been exposed to trace amounts of it when I was involved with a team conducting a thorough inventory of my ship’s supplies. The team, including me, was immediately sent to medical for an occupational health asbestos screening.
Radiation. There are many ways to be radiated and there are many types of radiation. Types of radiation can be broadly categorized as being either ionizing radiation (xray, gamma) which are known to cause cancer, and non-ionizing radiation (microwave, radio wave), which is disputed within the medical and scientific communities as to whether this type causes cancer or not. I have no idea how radiated I have become in my life; but, as a telecommunications specialist in the navy, I was constantly working around transmitters (I know, non-ionizing) and many other sorts of electronic equipment for most of my career.
Lyme Disease. I’ll be honest, I have found nothing that links Lyme disease with leukemia; but, I contracted it in 2005 and, before the leukemia, it was the most horrible thing medically that ever happened to me so I really, really would like to be able to blame it for my leukemia.
Unfortunately, neither I nor anyone else can say with any degree of certainty if one or all or none of these conditions caused my infliction. But here is to hoping and praying that someday a test will be developed that will. For once there is a way to determine the cause of leukemia, it seems to me that, in addition to providing a balm of understanding and a level of closure to the inflicted, it may also help facilitate the discovery of a means for preventing and eventually eliminating the disease all together. Until then we will just have to hope, pray, wonder, and wait.
But there is one thing I am certain of—if I am ever standing behind you in a security line at the airport and you start making a scene about not wanting to go through the body scanner for whatever reason and it has a negative impact on my travel experience, you will know that the sharp smack you receive to the back of your head and its resultant pain was definitely caused by me.
It’s 2:00 a.m. There is a blue glow to the room as I lie on my back trying to sleep. I’ve been trying to sleep for a long time. My toes burn and my back is hot. My skin itches. The black motion of sleep hovers right above my eyes, slowly rolling back and forth, and up and down, and in and out, like lava in a lonely lamp. I pray for it to come down and put me under. Occasionally I feel its numbing tingles of unconsciousness seductively pulling me down. But just when I think to myself that I’m finally falling asleep, it pulls back and continues its slow dance right beyond my reach. After each tease, I am more awake than before. I want to change positions but I know that if I do the black motion of sleep will disappear completely. I don’t want to lose it so I will not move. No matter how hot it gets between the mattress and the back of my body, I will not move. No matter how much my skin itches, I will not move. My hand pulls to try to scratch at the itching, but I will not let it go. As I continue to watch the black motion of sleep and feel myself not moving, my head becomes heavy, much too heavy for the pillow. It is so heavy I no longer have the strength to hold it atop of the pillow and it begins to sink as if it were lying in quicksand. I must finally be sleeping I think and I feel relieved. But the black motion of sleep is still there, hovering out of reach. I am still awake. My toes still burn. My back is sweating. My body itches more than ever. I am still awake and yet my head continues to slowly sink within the pillow. My ears disappear and all of the low, humming hospital sounds are muffled out. I only hear my nervous breathing. My head continues to sink and I can’t lift it up to stop it. Soon my mouth will go under, then my nose, and then I won’t be able to breath. I know I have to force myself to lift my head out of the pillow before I suffocate but I can’t move. I try with all my might but it just continues to sink. If I can move something, open an eye, wiggle a toe, cough, anything, my head will stop sinking and I will be okay. But I can’t. I can’t move anything. Nothing moves. I am in a moving car, standing where front seat passengers normally sit. My head, upper body, and most of my legs extend through the top of the car. I look down to see who is driving but it is too far down and all I see is a shadowed figure behind the wheel. The night wind is cold on my face and I enjoy the sensation of standing while the car moves. I feel as if I am flying. We are on a familiar road, Campbell Road, and I see that the cows are not in the field. Their barn is dark. There are so many stars out the night sky appears as bright streams of light. I’ve driven down this road many times. It’s the way home. The Susquehanna Trail is up ahead and I instinctively feel my body trying to slow itself down in preparation for the stop. I see the stop sign in the distance but it doesn’t seem as if we are slowing down as we should. I try to communicate with the driver but the wind will not let any sound escape from my mouth. I try to squeeze myself down into the car but I am too big. The car begins drifting to the right. The right side tires bounce off the road and onto the shoulder. Gravel kicks up. Up ahead, parked on the side of the road, is a State Highway Patrol car. We head directly for it. I panic. I bend over at the waist and lean over the outside of the front window to look into the car so I can see who is driving. My wife is asleep behind the wheel. I stand up to cover my face from the crash but at the last second our car swerves away from the cruiser and makes the left turn without stopping, barely missing the oncoming cars. I scream. I look back, expecting to see the flashing lights of the cruiser in pursuit of us but the car remains parked on the side of the road. We have a right turn coming up quickly but our car drifts across the center line into the path of another oncoming car. The car swerves into the other lane and misses us. We continue drifting more into the left lane until we are once again driving with half of the car on the shoulder. Cars continue to miss us. We drift all the way off the road and into the grass and head directly toward a large tree. I hold my hands out in front of me to try to prevent the crash. As the front of the car crashes into the trunk of the tree, branches whip my face and my fingers grab for them. It’s 3:00 a.m. I have to pee. I lift my head and I feel woozy but I have to pee so I rush out of bed. Standing, I really feel woozy, drugged up even. I unplug my IV pump and wheel it with me. The bathroom lights hurt my eyes. My vision is blurry. I reach down for my urine decanter and the blood rushes to my head. I stand up feeling dizzy and unstable. I begin filling the decanter. The dizziness doesn’t go away and my legs begin to feel weak. My mouth begins to water. I feel a tingling sensation moving up my body and tiny black spots begin appearing before my eyes. I’m going to black out. I have to get back to bed before I do. But I haven’t finished peeing. I feel bile rising up my throat. The black spots get bigger. I can’t pass out yet. If I fall and hurt myself it may jeopardize my transplant. I feel sick. I have to puke. I finish going to the bathroom. I fumble with the lid as I try to snap the decanter shut. The floor spins as I bend down toward it. I set the decanter down and stand up. My head spins and I totally black out. Blind, I grab for my IV pump for stability. I push the pump in front of me for protection as I head back to bed. I make it. I sit down and feel my body rushing in every different direction. I see nothing but complete, pulsing black. It’s hard to breathe but I force deep breaths. Cold sweat emerges from every pour of my body. The cool dampness is relieving and calming. My stomach settles. I lie back down in the bed and watch the black spots slowly disappear as the blue glow of the room returns.
So, in a little over a month I am scheduled to have my bone marrow transplanted. It sounds daunting but according to my nurse practitioner it will be rather anti-climactic. Apparently, I will receive the bone marrow harvested from my donor in the same manner I would receive a blood transfusion: hang the bags, hook them up to the pump, plug the line out of the pump into my Hickman Line, and then lie back and relax. I expect it might not be quite as easy to relax during the transplant as a typical transfusion but still, my job during this transaction between my donor and me is relatively easy. My donor, on the other hand, has a much more difficult task.
It amazes me that there is someone out there somewhere in the world who is not just a perfect match for me, but who is also willing to follow through with the donation. I have no idea where my donor lives or how far he or she has to travel for the procedure–he or she could live halfway around the world for all I know. Fortunately for the both of us, my hospital will cover the travel expenses and my insurance will cover the costs of the medical procedures; but still, what a disruption to life he or she is willing to make on my behalf, especially since my donor knows nothing about me, other than my life depends on his or her marrow. Likewise, I know nothing about my donor, other than he or she is truly generous and caring.
I am told that a year or so after my procedure I will be allowed to make contact with my donor, provided my donor wants to make contact with me. I will have to make that decision when the time comes. Right now I appreciate the anonymity of the process. It enables me to focus on preparing myself prior to the procedure and healing myself afterward without having to feel obligated to establishing and maintaining a relationship with my donor at the same time. Even to me this seems completely selfish, but it is how I feel.
Besides, how does one thank someone for such grand generosity anyway? Right now the only way I can think of is by simply saying thank you and trying to live the best life after the transplant as possible. We will have to wait and see if I feel differently a year from now.
Wednesday 2/24/10
@7:30am-Registration on the 1st floor of the Weinberg Building
a. Diagnostic lab studies.
b. @8:30am-Bone marrow aspirate and biopsy. Located on the 2nd floor of Weinberg in the infusion area.
c. Meet with R.N. at 9:30am. Located on the 2nd floor of the Weinberg Building.
d. Ct scans of the chest and sinus at 10:10am. Located on the 2nd floor of the Weinberg Building.
e. Chest x-ray at 11am. Located on the 2nd floor of the Weinberg Building.
f. @1pm-Spinal tap with IT chemo. Located on the 2nd floor of the Weinberg Building in the infusion area.
Thursday 2/25/10
a. Pulmonary function studies at 8am. Located on the 7th floor of the Outpatient Center. Please arrive by 7:30am to register.
b. EKG. Located on the 1st floor of the Outpatient Center in Express Testing. Register on the 1st floor of the Outpatient Center.
@12pm-Registration on the 1st floor of the Weinberg Building
c. @12:30pm-History and physical exam with CRNP.
Friday 2/26/10
a. Heart scan at 7:30am. Located in the Nelson basement in Nuclear Medicine. Please arrive by 7am.
Thursday 3/11/10
@7:30am-Register on the 1st floor of the Weinberg Building
a. @8am-Bone Marrow Education Class. Located on the 1st floor of the Weinberg Building in the Patient and Family Services Suite, suite 1210.
b. Meet with Dr. for a brief consultation at 9:30am.
Monday 3/22/10
@12:30pm-Register on the 1st floor of the Weinberg Building then go to IPOP-Located on the 5th floor of the Weinberg Building
Take the elevator to the 5th floor and make a right. Go through the door and check in with the receptionist.
a. Registration
b. Diagnostic lab studies
c. Meet with Dr. to sign consents at 1pm.
d. Meet with a nurse for an ideal body weight.
e. Meet with admitting to do your paperwork for admission on 3/24/10. Located on the 1st floor of the Weinberg Building. You must keep this appointment.
Wednesday 3/24/10
@12pm-Admit to start chemotherapy. Do not wait for a call to come in. Report to the nurse’s station on 5B.
Email excerpt from my Bone Marrow Donor Coordinator:
Hello,
I emailed the information below to [Kurt’s doctors]; I am still hoping to find another match– but as of date we only have one.
Kurt Brindley MR # X-XXX-XX-XX:
has 2 haplo* sisters, 1 disparate** sister, 2 MUD [Matched Unrelated Donors] Mis- Matches and 1 MUD Match.
Sincerely,
[Bone Marrow Donor Coordinator]
– – – – – – – – – –
* When trying to match a sibling, a haplo match essentially means that she has only one of the tissue types contributed by either the mother or father. A haplo match is a half-match, so to speak, and may be used in a transplant if a full match cannot be found.
** When trying to match a sibling, a disparate match has neither of the tissue types contributed by either the mother or father. A disparate match cannot be used for a transplant.
The underlines for emphasis are mine.
Visit www.marrow.org for more information about the Bone Marrow Donor program.
