An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters

FDA warns about increased risk of cancer relapse with long-term use of azithromycin (Zithromax, Zmax) antibiotic after donor stem cell transplant

The French study which the FDA based a recent safety announcement on had to be discontinued after two years because the rate of the return of cancer and even death was too high in those patients with cancers of the blood or lymph nodes who undergo a donor stem cell transplant and were taking the antibiotic azithromycin (Zithromax, Zmax) long term to prevent a certain inflammatory lung condition [LUNG GVHD/BOS].

While this FDA Safety Announcement focuses on those taking azithromycin long term as a measure to prevent Lung GVHD/BOS, if you’re like me and you have been taking it long term to treat Lung GVHD/BOS, you also might want to discuss this announcement with your oncologist and consider whether or not the risks exceed the benefits.

After discussion with my oncologist I have decided to discontinue taking the antibiotic after having taken it now for over eight years. I will undergo a PFT in a couple of months to see if there has been any further degradation to my lungs as a result of discontinuing the drug.

You can read the full FDA announcement here and you can read the announcement from the drug manufacturer here.

Best of luck to you all.

#vote

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Any Wim Hof fans out there?

If you’ve never heard of Hof before… prepare to have your mind blown.

This dude, known as The Iceman, can withstand the coldest colds and endure the hottest hots for practically as long as he wants all because he can control his mind and, through that, his core temperature, all through a radical breathing technique of his.

I’ve lost nearly half of my lung capacity due to a side effect called graft versus host disease after from my bone marrow transplant so, apart from the fact my survival rate chances were in the cellar, I never expected to be able to do much in the way of cardiovascular work ever again.

My son turned me onto Hof last year and, while I’m still in my initial stages of learning from this guy, you should see me going for it on the exercise bike and with the weights. I cannot imagine how much more I will be able to progress the more I progress with Hof’s techniques.

Reminder, as per clearly stated in my Terms & Disclaimers I am not a doctor so don’t go doing this stuff without consulting the experts first.

But if you want to experience a new reality of living… watch the fascinating Vice documentary about him below and then go check out this wild man’s youtube site.
 

 

The Purpose of Pain

Kurt receiving acupuncture treatment for his many ailments

When it comes to physical pain, it’s purpose is hardly in question: It focuses us to where our immediate attention and action is required.

We accidentally rest our hand on a hot stove top burner and, without our sense of pain, our hand, if it weren’t for our sense of smell, would become cooked well enough to serve up at the next meal.

We could laugh at this, but sadly and horrifically there are some who do not experience the sense of physical pain due to a rare condition known as congenital analgesia.

Continue reading “The Purpose of Pain”

COPING with #CANCER?

coping-quote

Hey! How about that?!

Our good friends over at COPING With Cancer magazine featured an excerpt from my little book HOW NOT TO DIE: In 13 Easy Steps in their recent edition.

Pretty cool, no?

Yes, indeed.

You can learn more about the magazine and all the good folks there doing God’s work here.

You can learn more about my book here.

You can check out the post the book was inspired by here.

And you can learn how I feel about pink as the color of cancer here.

#cancerisjustastateofmind
#peace

 
 

BRINDLEY 2.0: POWERED BY PLEX

BRINDLEY 2.0: POWERED BY PLEX
Let the journey begin!

Today I begin my cross-country trip with my sons to LA to join the rest of the cast and crew to film our movie LEAVE.

Pretty awesome.

And unbelievable.

As I’ve expressed here and on other networks often in the past and even more lately, there are many wonderful and supportive people who helped me through many adversities these past several years to allow me to be in this fortunate position I am now in.

This could get long and teary-eyed so I’ll save everyone the time and me the embarrassment and cut to the proverbial chase:

Outside my immediate family, I am hard-pressed to think of anyone who has supported me more, through times bad and good, with his physical, spiritual, and financial presence and care, than my long-time friend, my mentor, and my boss, Paul Weidow.

LEAVE would absolutely not be possible without Paul’s and his partner Stan Nolen’s (another long-time friend and eternal brother) generosity towards and faith in me.

Paul bringing me on part-time to be a member of his PLEX Solutions family, allowed for a stress-free transition back to normalcy and under terms very, very favorable to one still fragile and unsure of himself, yet one in great need of validation of worth, as well as one in great need of the time and funds to support and develop his movie-making dream, a dream that now, in much part because of him, is only days away from becoming a reality.

Thank you, Paul. I love you, brother.

Check out this amazing guy’s amazing company >> www.plex-llc.com


And please remember, LEAVE still requires much more support in the form of love, currency, outreach, and effort to ensure not only its completion, but its completion in a manner that enables us to fully realize our vision:

To Create a Cinematic Work of Art that
Entertains and Inspires Positive Change

#beliveinleave >> PLEASE DONATE

 
 

BELIEVE IN LEAVE

So, I was thinking (yes, I understand the risks)…

But, I was thinking, just imagine if each of the 25,109 and growing followers of this humble site were to donate just $1.00 to help me fund my film LEAVE…

Just imagine how much that would be!

Keep in mind that I am a product of the United States public school system, and that, by design, my higher level degrees have absolutely nothing to do with math, so my calculations may be a bit suspect…

But I believe that if every one of the 25,109 followers were to donate $1.00 to help me fund my film, that would come to the heavenly financial figure of… [finger cipher]…

$25,109.00!

Now that there would be a whole lotta of cheeze and it would help me in a whole lotta ways in realizing my cinematic dream called LEAVE.

Now, I’m a practical man (not!), and I know all 25,109 of you donating $1.00 each to support my dream is an impossible expectation…

But, let’s consider what you get here for free 24-hours a day, 7-days a week, 365-days a year non-stop and in perpetuity for as long as our pretty yet petulant planet revolves around the sun that may help motivate you towards donating that $1.00…

You get to publish your work to the RELATING TO HUMANS feature…

You get the IABS&R…

You get occasional “PRO-TIPS”…

You get LITERARY ZEN…

You get ARTWORK?…

You get HUMOR…

You get HEALTH advice…

You get MOTIVATIONAL ADVICE…

And you get so much more.

But, even with all this free stuff created just for you forever floating around here, I understand that my hope of everyone donating even just $1.00 is an impossible expectation.

But then again…

SO WAS THE CAVS COMING BACK FROM BEING DOWN 3-1 IN THE FINALS!

AND SO IS THE TRIBE WINNING THE WORLD SERIES!

BUT IT’S THE YEAR OF “BELIEVELAND” BABY!

THIS YEAR, ANYTHING IS POSSIBLE!

WHICH MEANS, WITH YOUR HELP

LEAVE IS POSSIBLE!

Uhm…

Too much, right?

Yeah.

Sorry ’bout that…

Anyway…

Please donate what you can, if you can, my friends >> BELIEVE IN LEAVE.

Thank you.
 

BELIEVE IN LEAVE

 
 

My Chemo Brain Counter-Offensive

So… yeah. I’ve been having some chemo brain issues for quite a while now and I’m in search of interesting ways to build up my brain muscle to counter these “cognitive disorder” side-effects, as my neurologist so neatly calls them.

I’ve never been a board game – or any game for that matter – kind of guy, but I’ve read and I’ve heard anecdotal evidence that board games do help with one’s focus and clarity issues.

With this anecdotal evidence as my impetus, of course I went to Amazon, the event horizon of the internet, and searched around for what the best board game for my particular interests would be.

And I found this:

Cards Against Humanity
 
As you can see, it tags itself as “A party game for horrible people.” And while I don’t feel that I’m all that horrible, after reading a few of the many thousands of reviews, it does seem like a game that would appeal to my interests.

Does that make me so horrible?

That was rhetorical.

Anyway…

Which brings me to the point of this pointy post…

Research, with you being my source information.

Have you played the game? And if so, what do you think of it? Is it fun? Challenging? Stoopid? Do you feel you have a stronger brain because of your playing it?

And don’t worry, just because you played the game doesn’t mean I will judge you as a horrible person.

Necessarily…

I will, however, admire your courage for admitting it.


If you’re not familiar with the game, you can learn more about it here.

 
 

The Power of About

I may be mistaken, but it is my belief that we’ve all been to that dark, lonely place at least once or twice in our lives where we, and the lives we have led, seem…

Insignificant.

Less than.

Pointless.

power-of-about

It’s a scary place and one which I suspect, and hope, the majority of us visit only infrequently and fleetingly because our lives are fulfilling and rewarding enough to steer us clear from the depression that can lead us there.

However, I also suspect that there is a significant minority of us who visit this dark, lonely place more often and for longer periods than most since, according to NAMI, the National Alliance on Mental Illness, nearly 19% of the United States’ adult population experience some degree of mental illness throughout the year [1]. And, according to the National Institute of Mental Health, major depression is one of the most common mental disorders in the United States [2].

I, myself, became a frequent visitor of this dark, lonely place not long after I began taking high doses of the steroid prednisone to combat a deadly disease that was destroying my lungs, and one which I was given little chance of surviving.

It was a hard enough to mentally process that my life may soon be ended by an aggressively fatal disease — pretty tough for anyone to process, I would imagine — but couple that bummer news with a steroid that induces psychosis-like side-effects and, yeah… double bummer.

Consequently, it wasn’t long before I found myself spending nearly as much time in that dark, lonely place as I was out of it.

It’s hard to explain what I and my mind were going through whenever I visited there. I’m not sure there is a way to describe it wholly in just a few words. It is both a tangible and intangible feeling. A cold feeling sometimes. A heavy feeling other times. But it was almost always a feeling of pointlessness. A feeling of… Why bother?

I was dying. My body had failed me and I had failed my family. The only thing I felt I was good for now were my less than adequate disability checks. Were I gone, my life insurance payout would have been much more rewarding and helpful for those whom my absence would release from the burdens my illness had placed upon them.

Yeah… I was down there in that indelible darkness of depression pretty deep.

Fortunately for me I had a saving grace — several of them, in fact.

One, the primary one, was a support network of family and friends who loved me, cared for me, and prayed for me.

Another, was that I like to write.

The Writing Hand
The Writing Hand

I began blogging shortly after my leukemia diagnosis. Nothing too deep or introspective — though scared, I was completely confident I was going survive — just updates to keep my friends and family informed of my health and happenings during my treatment.

But months later after learning my lungs were slowly dying away as a side-effect result from my bone marrow transplant, and having to begin a hefty prednisone regiment in an effort to slow the dying process down, my positive perspective on things changed significantly.

Though the drug-induced and drastic mood swings made it difficult to focus, I began to blog more often and about more personal matters. And while I regard my blogging experience during this difficult time as a very beneficial, therapeutic activity — an activity I presume many others regard beneficial as well, for a simple Google search of the term “writing therapy” resulted in around 259,000,000 results — it wasn’t helping me to shake the persistent feeling of irrelevance; of feeling that I others would better off if I were dead.

Fortunately for me, since I was spending more time thinking deeply about my life for my blog, I eventually began tinkering with my blog’s “About” page.

And this tinkering proved to be yet one more saving grace; for it led me on a path to try to discover things about myself that others might find interesting enough to inspire them to read more of my writing.

And once I began thinking in more of a self-promotional, third-person kind of way about my life, I began realizing and rediscovering things about myself that I found to be very special and unique.

For the next week or so, I stopped blogging altogether and, like a gold digger after finding his first valuable nugget, I worked passionately on mining through my past to dig up and write down all the meaningful nuggets I could find.

And when I was finally satisfied that my life was properly represented on the page, I began to craft the long, meaningful list of me into a voice that, when others read it, would be heard distinctly as mine.

When I was finished*, my “About” page was more than just being about me… it was me.

And even now when reading this long and winding written documentary of me, I am filled with a sense of gratitude and purpose so powerful that, even if I were to once again visit that dark, lonely place, I could never do so feeling as if my life were pointless and without meaning.



1. https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
2. http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml


*As I live and grow, so too does my “About” page. It will never be finished completely… until I am.

On why I choose to refer to those who help fund my film as “Donors”…

Admittedly, with these newfangled campaign funding sites such as Indiegogo and Kickstarter, where they have their “Backers” or “FUNders” or whatever else they call those who give money to a money-raising campaign, me referring to my supporters as “Donors” seems a bit anachronistic.

However, there is a very important reason as to why I do.

It is, perhaps, a term the most near and dear to my heart…

For, it wasn’t a “Backer” who was willing to sacrifice her time, effort, and self for someone she didn’t even know…

It wasn’t a “Backer” who had to take off work, find her way to the hospital, prepare herself mentally for an operation, sign all the forms, wear the silly patient outfit…

It wasn’t a “Backer” who had to endure the days of pain and discomfort caused by the operation…

And it wasn’t a “Backer” who blessed me with her bone marrow.

She was a Donor.

A Bone Marrow Donor.

And she saved my life.
 

Please consider becoming such a selfless and life-giving Donor as is mine.


 

BONE MARROW DONATION FAQS

 
 

HOW NOT TO DIE: In 13 Easy Steps

How Not To Die Book Cover


 

Inspired by the reception the HOW NOT TO DIE article received, I have now made it available as an ebook edition which is now available, for the time being, exclusively at Amazon.

While staying true to form of the original article, I have updated the content for clarity and completeness. Additionally, I have included with the edition, relevant poetry from my newly released book of poetry Short Verses & Other Curses: Haiku, Senryū, Tanka & Other Poetic, Artistic, & Photographic Miscellany, as well as a selection of similarly themed short stories from my forthcoming release LEAVE: And Other Stories Short & Shorter.

Links to all the health-related articles that I have written and posted here can be found near the end of the book.

Finally, a portion of the proceeds from the sale of HOW NOT TO DIE: In 13 Easy Steps will be donated monthly to my wife’s and my favorite charities and organizations committed to the curing and caring of those suffering from cancer and lung diseases.

I hope you enjoy the book.


Note: Even if you don’t have a Amazon Kindle or Fire, you can still read all Kindle products on your computer, tablet, or phone by downloading one of their free reading apps here.