cancer

HOW NOT TO DIE: In 13 Easy Steps

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On this day five years ago, I received the news that a recent lung biopsy showed that my lungs were inflicted with a severe form of graft versus host disease (GVHD) called bronchiolitis obliterans syndrome (BOS). BOS, I came to find out, was a known but uncommon side-effect resulting from a bone marrow transplant (for leukemia) that I had had earlier in the year. And by severe I was told it meant the BOS was incurable, non-reversible, and, in most cases, aggressively fatal. I was also told — because I had asked and insisted on an answer — that, according to a National Institutes of Health (NIH) study of the time, BOS had only a 13%, five-year survival rate. In other words, there was an 87% chance that within five years I would be dead.

Well, it’s been five years and here I am – a newly minted Thirteen Percenter.

Can a brother get a “Hell yeah?”

Hell yeah!

Anyway… at my most recent appointment with my oncologist, in addition to his standard declaration whenever he sees me of, “So, I see you’re still alive,” he also declared that my present condition may just be a miracle of sorts because it appears that my incurable BOS may have actually been cured… somehow.

I don’t think I would be overstating if I said that, because of all my goings on these past five years – goings on such as leukemia, GVHD (and not just of the lungs, but also of the eyes, liver, and intestines), prednisone side-effects, cytomegalovirus (CMV), and heart failure to name a few – I think I’ve learned a thing or two about life in general and living it in particular.

Now, if you search around this site, I’m pretty sure you will find that much of my writing, mostly encapsulated in my haiku, reflects a lot of the insights and learning I’ve garnered from these goings on. However, just because I like you all so much and don’t want you to have try to sift through this site for days on end in an effort to discover these insights and learning, and because short, pithy lists are all the rage these days, I will identify for you the top thirteen things I learned about how to not only not die, but mostly about how to best live your life filled with happiness and meaning, regardless whether death is looking you directly in the face or not.

Cool?

Okay, so here we go…

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I’d like to introduce you to my little friends…

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The boys at play
Brothers at play

Friends and new family members, that is…

While we have quite the cat already – Jack Kerouac – whom I introduced some time ago and can be found as part of Photography page’s gallery collection, I am and always have been a dog man…besides, Kero-chan will have nothing to do with me as he is wholly devoted to the lovely and loving wife, and who can blame him.

But that is fine by me. As a true dog man I can remember clearly all my dog buddies who were there for me all throughout my life. My first dog as a child was an old hound dog named Mickey. I remember with fondness how his tail would always slap at me whenever he was happy. And while all my dogs were great friends to me, my bestest of best friend of all was our last dog Shikibu, a tiny little snowball of Maltese magic.

Shikibu
Murasaki Shikibu
There are several reasons I am still here on earth after all the leukemia and lung disease as a result of the bone marrow transplant BS. First and foremost is that Universal Power Source of Infinite and Abiding Love we often refer to as God answering all the many, many prayers from all who love me in the form of my lovely and loving wife’s angelic grace and care, and a close second was Shikibu’s love and devotion to me throughout all that BS. Rarely could I leave my chair throughout all that BS, and rarely was Shikibu not by my side throughout all the BS…tucked away snugly, seemingly impossibly so sometimes, between my left hip and the arm of my recliner. Although eternally a puppy in looks and demeanor, she was an elderly lady when the cancer bug got me in 2009, and she was there for me through the worst of it. She died in 2011, not long after we all pretty much realized that I was going to be hanging around a little bit longer after all. She had many serious illnesses herself toward the end but it is my firm belief she held on long enough to know that I was going to be okay. It took me a long time to get over her passing; though I’m not sure that I really am…or ever will be. But recently I had finally reached a point where I was in need of more canine companion.

We knew we wanted a rescue puppy (it had to be a healthy puppy as I have enough issues of my own for my lovely and loving wife to attend to) and we knew we were going to be patient in the process. I did not realize, though, just how patient we’d have to be. I did most of my puppy searching through www.petfinder.com – it’s a very helpful place as it allows targeted search options. Still, I had no idea there are so many dogs in need out there. It took a lot of time. Always getting close, but never getting the cigar, so to speak. We’d find a pup we all could agree only to find that it was either too far away or that someone had just adopted it or any other multitudinous hurdles of a reason. It started to become tedious so we decided that we were going to wait until springtime to continue the search. That way we wouldn’t have to potty train a puppy in the snow. But a couple of days ago I just fired up the link on a whim and right away I came upon “Stella’s Boys” and that was pretty much all she wrote. We found exactly the pup we were looking for…the mostest cutest Plott Hound mix puppies you’ve ever seen

I wanted another hound dog, in honor of Mickey. One son wanted a Retriever for their loyalty and playfulness. And the other son wanted a brindle coated dog because of their unique look and cool name: brindle ~ Brindley …get it? And the wife did not want a horse-sized dog. All these desires came together courtesy of the awesome folks at the Delaware Puppy and Pet Rescue, Inc. Remembering the other pups we lost out on because of delay, I quickly filled out the online Adoption Contract and waited hopefully for the call back, which came on Saturday in the form of an email from Dianne, a hero and angel of a foster mom to the puppies, and many others, saying that we had passed the background check – a call to the references I provided and our local Vet – and invited us to her home to meet with the boys.

Yesterday we made the beautiful two-hour drive to Landenberg, Pennsylvania. If we hadn’t been on such a mission, the wife and I could have easily spent the entire day taking pictures, as the countryside drive was so pleasantly pastoral. But we were on a mission and as soon as we got to Dianne’s home and I saw all the cute puppies, I knew we were coming home with more than one.

And we did. And now I once again have my much needed and appreciated canine companion…thankfully so.

While I can pretty much guarantee you won’t be seeing many more, if any more, pictures of Kero-chan here, I cannot make that same guarantee about the newest members to our family. And while she will always be my bestest of friend and I will forever miss her, I’m pretty sure Shikibu, up in doggy heaven with Mickey, Kipper, Colonel Kish, Juno, and Sebastian, is perfectly okay with that.

Now whether Kero-chan is okay with the invasion…well, that’s a different story.

Puppies at rest
Brothers at rest

If You’re Here You Must Be Sick…

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(OR CARE FOR SOMEONE WHO IS)

I’d like to think that one or two of my three regular visitors (one of whom is me) come to this site to gain a deeper understanding of my creative writing by exploring my short stories, and poetry, and my insightful and sometimes witty flash fiction, and, most importantly, to buy my books.

Yeah, that’s what I’d like to think.

However, the reality is far from it.

The unfortunate truth is that, by far, most people who visit this site do so because they are seeking out information about my diseases, past and present.

The most common search terms that lead these seekers, or anyone for that matter, to my site are:

gvhd lungs
bone marrow biopsy
hickman line
graft versus host disease lungs
bone marrow needle (the article these terms lead to provide for some interesting pictures (viewer discretion advised))
prednisone and caffeine
prednisone and coffee

The most popular article on this site, which has nearly triple the amount of views of the second most popular article, is Lung GVHD By Any Other Name, where I discuss my frustration about finding out I have the incurable disease.

I say the truth is unfortunate not because I’m upset that people are not here to read my creative writings (although I confess my ego is a bit miffed), I say it is unfortunate because I know that if someone is here to learn about my experiences with leukemia and graft versus host disease, then he or she probably is in for some challenging times.

And that is unfortunate.

About a month after I was informed I had leukemia, I started blogging about it at a site I called Marrowish. And I blogged there regularly for two years. For two years I was consumed with wanting to know as much about my diseases (first leukemia and then GVHD…of the lungs…and eyes…and liver) as I could find, and I wanted to share this knowledge with as many people as possible.

But eventually I got sick of being sick…and of having my thoughts and actions being consumed by it.

So I stopped thinking about it (the best I could) and writing about it.

That was over a year-and-a-half ago…

But, seeing how “popular” all my sick-related articles are, perhaps it’s time I began providing updates on my health again from time to time.

I’m still certainly sick of being sick, but the good news is I haven’t really gotten much sicker since my last update (which was more like a major whine-fest than a health update).

In fact, I’ve been pretty stable and have even improved in some regards. This stability and improvement may be because I have been doing some pretty cool health-related things lately (I say “may” because during the past four years of my involvement with the medical community, one thing I’ve learned is that there are not many certitudes when it comes to healthcare).

I’ll try to expand on these in later articles, but here is what I have been up to health-wise the past year-and-a-half:

– April 2011, I began a five-year Bronchiolitis Obliterans Syndrome (BOS) study at the National Institute of Health. This study’s goal is to get FDA approval to use Montelukast (commercially known as Singulair and typically prescribed for asthma) as an authorized treatment for BOS. Since I began taking the drug I have been able to stop taking the steroid called prednisone—which is a major victory—and my lung condition has remained stable, as proven by regular pulmonary function testing.

– January 2012, I began twice weekly Extracorporeal Photopheresis (ECP) treatments at Johns Hopkins Dermatology Center. While there is no conclusive evidence as of yet, it is thought that this blood treatment may be effective in bringing calm to all those crazy outta control T-cells (affectionately called GVHD) that we post-transplant patients tend to get. I cannot say for sure that these treatments have helped; but I can most definitely say that they haven’t hurt — except for the fact that they take a big painful bite of time out of my life. Each treatment is about three-hours long; add to that the drive time coming and going plus the system prep time and it comes close to being a five-hour-per-treatment bite of time. Ouch. But, if you’re looking for options to treat your GVHD, you surely want to consider ECP as one of them.

– May 2012, I was fitted for Prose lenses at Johns Hopkins Wilmer Eye Institute. These scleral-type lenses used to be referred to as Boston Lenses, since Boston is where they were invented and was the only place where one could get them. Fortunately, Johns Hopkins now also provides the service. These vision-saving lenses have drastically changed and improved my quality of life.

– August 2012, I had cataract surgery in both eyes. Yeah, prednisone may have saved my life, but it definitely took a toll on my body. However, after I had the surgery and once my Prose lenses were readjusted for my new vision, my eyes are now bionic.

Those are the major things that I’ve been involved with that I feel could benefit others who are dealing with similar challenges as me. Of course, there are other things I have done and continue to do (like my countertop calisthenics, for instance) that may be of use, too, and of which I will write about at a later date.

Who knows, maybe someday I might even coral all this health stuff into an easy-to-read ebook, or something…

We’ll see.

Until then please remember that whatever it is you’re seeking, or regardless your reason for visiting, I hope you find at least a little bit of solace from the words that have accumulated here over the years.

Thanks for stopping by.

~~~~

PS… Please take the time to read my Disclaimer for this site.

Insurance Insures Ensures My Frustration

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Back in February of this year, I posted the following gripe to my personal facebook page (as opposed to my public facebook page):

I am fortunate to have a rather decent long-term disability policy with Mutual of Omaha, which I, thankfully, purchased through my former employer prior to the diagnosis of my cancer.

One of my frustrations (of several) with the policy is, though, that Mutual of Omaha required/forced me to apply for federal Social Security disability compensation at the onset of my claim. Once approved, Mutual of Omaha then began deducting the amount the federal government pays me from what they pay me.

That seems like such a scam to me; however, from what I have been able to find out, it appears to be a legitimate scam.

Legitimate does not always equate to being right.

Regardless, since the American federal tax payer is providing nearly 33% of my disability compensation, I suppose it is incumbent upon me to say thank you to them for their support.

Thank you, American federal tax payer.

I would like to add an update to that gripe:

Back in May of this year I found out that, because I had been collecting Social Security disability payments for two years (which I was forced to apply for—see above), I would now be forced to apply for Medicare health insurance. Well, technically, I wasn’t forced to apply for the government-sponsored program, however, if I had chosen not to, I would have been dis-enrolled from my primary insurance program, Tricare, which is administered by the US Family Health Plan.

So, of course I applied for Medicare.

The fun part is, not only do I have to pay an additional $100.00 a month (well, technically I am not paying out the funds; they are automatically deducted from my monthly Social Security Disability payments—six in one, glass half empty in the other) for the government program on top of the premiums I still have to pay for Tricare, I am not allowed to use the government benefits which I am forced to purchase.

Ah yes. I must always remember…pain is just a loving reminder that I’m still alive.

Consider Yourself Warned!

Okay, I’ll admit—maybe Medicare will come in handy some day as a backup for Tricare.

But still…it’s all a little too hokie and borderline scam for my taste…

No Sense, Whatsoever

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Yeah, it’s another one of those piss and vinegar kind of days…

I mean, Come! On!

Without even mentioning my slowly deteriorating and dying lungs, it’s bad enough that I have lost most of the feeling in my lower extremities due to the neuropathy that was brought on by all the chemo I got juiced up with to treat my leukemia, or that I lost most of my ability to smell or to taste to only our tight-lipped God knows why (my doctors sure as hell don’t know), but, because of the reemergence of GVHD due to my decrease in prednisone dosage, do I really need to now start losing my ability to see, as well?

Jesus Holy Christ!

And Mohammad, too!

(I’ll leave it up to you to determine whether those pleas are requests for spiritual intervention and/or guidance or just blasphemously rude exasperated expletives.)

And it’s even worse than bad enough that not only am I slowly losing my vision to a deeper and deeper foggy blur, but is it really necessary to have to lose it in such a painfully annoying way?

I mean, come on! That’s just a bit beyond the boundaries of good taste, as one of my favorite former clients used to often say whenever things got really fucked up on the job. (I’m sorry if me saying “fucked up” offends you, but I only say “fucked up” simply to keep this little aside paragraph in the spirit of things that one of my favorite former clients used to often say.)

But I mean, Holy frikkin’ Buddha, come on! Can someone just please give me a goddamn break?

When I wake in the morning, my eyes, especially my right eye, feel as if they have a big chunk of jagged glass in them. Seriously. I’m not exaggerating. Well…maybe a little. But still, it takes several hours until the pain associated with the stuck in the eye feeling diminishes enough to where it only feels like there is a modest chunk of rock in them instead of a big chunk of jagged glass. But regardless of how it’s described, it always feels like there is something stuck in them and it drives me absolutely frikkin’ crazy.

And then, I guess my eyes figured since they aren’t needed to see so much anymore, they decided to stop producing tears. My eyes are now constantly dry as a brittle bone. As a result, they burn so badly it feels as if they are being, not bathed in their natural tears, but rubbed down and cured with salt each time I blink.

And then, the slightest amount of light or breeze feels as if someone is thinly slicing into them with razor blades.

Pure torture.

Pisses me off and depresses me so because, all my life the sun was always my most bestest buddy, but now it is my worstest enemy. Not only can I not stand to even catch the slightest glimpse of the sun anymore because it is just too painful, but ever since my bone marrow transplant I can no longer risk getting sunburned because, at a minimum it could screw up my graft, and at a maximum it could kill me.

Sorry sun. I used to love you, but now I must hate you.

Let’s see….what else do I have on my docket of “poor me” gripes and whines for today?

Oh yeah, the medicine.

The docs have me on four different types of meds to treat my eye gvhd:

1. Artificial tear drops.
2. Drops that are supposed to help my eyes produce tears.
3. Steroid drops that are supposed to help suppress and slow down the damage done by the gvhd.
4. And an ointment that I squeeze into the eyes at night to help keep them moist while I sleep.

I could not survive without the artificial tears. I am constantly dropping them into my eyes. It’s a pain in the ass to have to do it, what seems like, every five minutes or so, but it’s a vital pain in the ass. And the ointment feels pretty good. But if the drops to help me produce tears and the steroids drops are working, I sure as hell can’t tell. The only thing I am sure that they do do is make my eyes burn and my vision blur even more than normal.

Here are a couple of examples of exactly how much my eyes burn: 1) My nose is always runny because of the burn. I couldn’t figure it out at first. I thought maybe I was coming down with another infection. Very annoying. 2) The burn from the dryness must really warm up the surface of my eyes because after I drop the artificial tears into them and then put my glasses back on, the lenses fog up a little around the eyes. Seriously.

I dread it when it comes time to have to put the pain producing medicine drops in my eyes. It takes a good hour afterwards before my eyes return to “normal.” Unfortunately, the supposed tear producing drops go in twice a day and the steroid drops go in three time a day; so, for about five hours out of each of my day, I get to self-inflict even more pain on my painful eyes.

Fun.

And you know what scares me the most from all this? It’s that I am having a harder and harder time doing what I love to do so much, and that is this, what I am doing right now.

Writing.

Working on the computer.

As I wrote this pathetically whiny draft on a Word document in a completely darkened room, I literally could not see anything much more on the screen than a glowing blurry mass of white characters. The characters are white because even the light, especially the light, from the computer is torture, so I have to invert the colors of my documents so that the page is black and the characters I type are white.

You should see how ridiculous I look right now as I prepare this…all squinty-eyed and mouth opened, glasses pushed up on top of my thin and disheveled-haired head, face pressed up as close as possible against the screen in a near-failing effort to read the crap that I’m typing.

Expect to see, which I am sure you do, see things with your eyes that is, and expect to see with them even more annoying typos in my junk than normal.

Yeah, it’s all getting really hard.

And stressful.

To be honest, I don’t know how much longer I can do it.

Write, that is.

It is just hurting too much.

And I suppose, as I continue to reduce prednisone dosage, it’s only going to get worse.

And if I can no longer write…

especially after all my life wanting to have the time and ability to be able to write full-time like I have been able to do since all the cancer fun started…

I don’t know what I will do.

But I do know I will be very sad until I figure it out.

But as of now, I do not have it figured out.

Because all my lack of senses…

makes no sense to me, whatsoever.

I mean, come on.

Exploiting the Crisis

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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?

I think not, so I am exploiting the hell out of my disabilities to blog and to facebook and to tweet and to finally publish the novel and poetry collection that I had never been able to finish before because life had always gotten in the way.

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? 😉

Ask the Question, I Dare You

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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.

But you get the point, right?

Just ask the damn questions, will ya?

My New Anthem for Life

by

David Grohl
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.

True, so very true.

Caffeine Therapy – Update #2

by
Moon Face Kurt
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.

Fingers crossed.