National Institute of Health

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.

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

Caffeine Therapy – Update #2

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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.

Caffeine Therapy – Update #1

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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.