If You’re Here You Must Be Sick…

(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.

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7 Replies to “If You’re Here You Must Be Sick…”

  1. Yes, we are sick. Really enjoyed reading your blog. love your sense of humor and thank you for sharing your experiences with leukemia,GVHD and the treatments. your writing brought a smile to my face, something I’ve needed

    Like

  2. I got sick and tired (of being sick and tired and in constant pain) some 4 1/2 years ago.

    Now I’m a PHOTOGRAPHER (as you will know having just started following one of my PhotoBlogs – Living and Nature). Thank you for following my photography journey and as much as I’d like to reciprocate, I’ve just UNfollowed nearly every one whose blog I love, purely and simply because reading just tires me out these days and I was spending too much time on the computer and not enough time outdoors doing the very thing I love best – Photography and communing with Nature.

    I don’t have Cancer fortunately, but severe Hypertrophic Cardiomyopathy and Fibromyalgia (at the beginning of the long list of Health Issues), are just as mind-numbingly ‘boring’ to the uninitiated.

    Delighted to see your wonderful writing in the published form. Hope it continues for many, many years into the future.

    You have such a wonderful sense of humour. Don’t every let it diminish into the background of Chronic Illness. It can be a lifesaver in this uncertain world of severe and often debilitating illness.

    Liked by 1 person

  3. Sorry to hear about all the pain issues, Vicki; but how you are managing them is inspiring. Actually, things have progressed unexpectedly well for me since I wrote this. Probably should do an update just for the record. Thanks for stopping by, the nice comments, and the completely understandable non-follow.

    Like

  4. I always mean what I say. I didn’t come here for your sickness of any sort. I know a poet-short-story man in PA and so I clicked to see if I could tell you two apart. Good thing is all writers don’t read the same or look the same in text—much like real people, I can tell you apart.

    Since the L word has inserted itself into your life and also into your blog conversations, I’ll share that my grandfather was diagnosed when I was too small to know anything except, “that doesn’t look like Grampa.” That was in the mid 70s; he’s nearing 90. Some 38 yearsish have seen him in full remission. Every body is different and leukemia is different from case to case.

    To each of you who stop in because you’re hurting or you’re hurting for someone else who is hurting more, I have nothing to say but only compassion to offer. Trite isn’t something to which I aspire.

    Liked by 1 person

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