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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




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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I Want To Know

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.

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A Bone Marrow Biopsy

If you’re like me, you’ve probably never witnessed a bone marrow biopsy procedure before. That’s right, even though I’ve had more procedures done to me than I care to remember, I have never actually seen the procedure being performed on me. This is because, 1. I always have to lie on my stomach, and 2. I’ve always been too scared to try and look.

But during today’s procedure, I mustered up the courage and asked my herculean wife to take pictures of it so I could finally see what it was all about. I call my wife herculean because she’s been exceptionally strong and courageous for me throughout my entire cancer experience; and after I saw the pictures, it amazes me even more how strong and courageous she really is. I know for certain that if the roles were reversed and I had to be there to support her during one of these procedures, especially during the first time, I would pass out. For real.

I also asked my wife to take the pictures so I could share them with others who may be interested in learning and seeing what a bone marrow biopsy is all about. But please be warned, these pictures may be disturbing for some people. If you’re still interested, please click the more link. Continue reading A Bone Marrow Biopsy