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Ask the Question, I Dare You

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?

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Caffeine Therapy – Update #1

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.

Until then.

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Finding Out – Part II

Most of us are probably familiar with the television drama scene where the doctor, prim in his white lab coat, sits at his desk in his office with a husband and wife sitting across from him. The couple seems apprehensive, knowing that their doctor called them in to tell them something very serious. And then doctor gently breaks the news to the couple that the husband has cancer. When the couple hears the news, the wife softly sobs into her husband’s shoulder as the husband resolutely asks the doctor both what are his chances and what are his options. You can imagine how the rest of the story goes. It is a typical Marcus Welby M. D. scene. However, life is not a television show, at least it isn’t for me.

The Johns Hopkins University Hospital is located on the east side of Baltimore and the main hospital is very much an inner city hospital. So, after circling around the block several times in an effort to find a place to park, and after walking what seemed at least a mile in the rain (Can you feel the melodrama starting to seep in?), I entered the hospital way out of my element and more than a little upset about having a leg full of blood clots.

Languages other than English were being spoken. Even when English was being spoken, it was often as a second language. Other than the fact that I felt like I had entered a United Nations sponsored medical bazaar, the emergency room experience started out like most emergency room experiences: long periods of waiting while sitting in uncomfortable chairs in a crowded room full of loud conversations. Eventually, I made my way through the process: check in; vital signs taken and blood drawn; move to the next waiting room to be screened; screened; move to another waiting room to wait to be seen by the on duty physician; move to the curtain-enclosed room to meet with the on duty physician; more waiting.

By this time my wife had arrived. We both waited in the small room–a large nook with a hospital bed is a better description–behind a privacy curtain. The emergency room was busy and we heard all of its busy noises, including the on duty drunk moaning and complaining about something that I could not understand. Every time he would moan, someone would holler at him to hurry up and go to sleep. A nurse entered and quizzed me with a slew of questions while she poked and prodded with her fingers and hands and listened intently with her stethoscope. With the promise that the doctor would be seeing us soon, the nurse left my wife and me to continue our pondering as to why in the heck I had a leg full of blood clots.