Thursday, September 17, 2015

To Blog or Not to Blog

Well, to blog or not to blog is not really the question.  I’m not going to abandon you now.  But as I celebrate (and I do mean celebrate, with all the gusto I can muster) the arrival of my 58th birthday tomorrow (Friday, September 18) one thing seems pretty clear:  it’s very unlikely there’ll be a 59th.

It’s kind of slap in the face to hear those words from a friend, isn’t it?  It’s one big bucket of cold water.  But it’s also nothing but the truth.

I am struck by my late colleague Warren Elly’s blog, The Way Forward.  When he started his blog after receiving his cancer diagnosis in December, I wonder if he realized what he would be putting himself through.  He shared with us the trauma of learning to cope with one’s own impending mortality—and then one day his voice was simply gone.  No goodbyes, no warnings, no heads up of any kind that this entry might be the last.  But then suddenly it was. 

I didn’t set out to write a blog about dying, you know.  It just sort of morphed into that.  I started the blog in April of 2014 to celebrate someone else’s demise.  I know—it’s both cruel and funny at the same time.  But I thought the world was a better place without the voice of Fred Phelps and it seemed like a good time to say so.  You may remember Mr. Phelps—he’s the so-called pastor who led his followers into some of the most vile exhibitions of distasteful conduct in memory, calling down the wrath of God on our servicemen and women on the theory that America deserves destruction because of its tolerance of gay rights.  At the time I wrote the blog entry, I was just recovering from bladder and kidney cancer surgery.  They tell new authors that you really need a blog to get yourself established in the minds of your readers and potential readers, and the Phelps story was current, so there you go.  My thoughts struck a chord; to this day it’s the 6th most popular item on the blog.  Oh, and for the record I really wasn’t celebrating his death, just his silence.  Who knows, maybe I’ll get to relay that clarification to Mr. Phelps in person sometime soon.  Here’s hoping I find myself shouting down, not up.

A short time later I took a gig with PowerTalk 1210 radio here in town, and the blog fit perfectly with that.  What a great time that was!  Getting to talk on the radio about anything and everything I wanted; working for a great station manager named Jim Parisi who was nothing but the soul of encouragement; getting to be part of an experiment in talk radio that is pulling off something quite different for the Tucson market.  What a blast.

But a dark cloud appeared on the horizon.  I began noticing that my stamina was decreasing.  One doesn’t think of preparing and delivering a radio program as being hard physical labor, but it began taking a toll.  At the end of each shift (and the shifts were not long) I found myself increasingly tired, and the problem got worse as time went on.  I faked my way through it.  But then there was another problem.  It was getting harder and harder each day to finish out the show with my voice intact; somewhere hoarseness was creeping in from out of nowhere.  You can’t do radio without a radio voice.

And of course, I found out why.  In the spring of this year I got a fateful phone call (they do it in person in the movies but in real life it’s always by phone) telling me that cancer had reappeared in my abdomen and this time it was metastatic.  And that is what began the transformation of this blog from one about politics and women and pop culture and anything and everything else to one about dying.

Why write a blog about dying?  Well, on the one hand, why the hell not?  On the other, I have to say I didn’t realize just how much that aspect would come to dominate my writing.  I had envisioned myself as becoming a mean-as-hell-blogger—the “Walter White” of bloggers, as I put it, with gloves off.  By the time I realized the blog had become something else, people were becoming increasingly invested in my story.  So I couldn’t quit then, could I? 

I mean, I suppose I could have, but friends and acquaintances have been so caring and so concerned in their outpourings that I didn’t think for one second about the possibility of shutting down the narrative. 

The most compelling argument not to quit now is simply this:  I’d miss you.  Lots.  Who’d have thunk that when someone squeezes a silly-ass emoticon into a letter or email that it would mean something, but I’m here to tell you that such things do matter.  Further, there have been things I’ve still wanted to accomplish in life, and so many of you have expressed an interest in hearing what they are and in taking some of those steps with me, that it’s been overwhelming at times.

So now that I’ve recommitted to going forward, let’s take a look at where I am, starting with the purely physical.  Here is what my day is like from that standpoint.  A major theme of the past few weeks has been the challenge of my continued physical deterioration.  I wake up every morning in a bit of pain from the cancer in my abdomen; it’s getting worse and we’re probably going to have to step up treatment for that soon.  But that is not the first thing I worry about upon waking.  The first thing I check is my breathing.  My lung capacity is about topped out now even at rest, which is very scary.  It’s not particularly noticeable if I’m just sitting in a chair doing nothing—but if I go upstairs I can find myself laboring for breath like I’d just lifted weights.  When I take in an extra breath to catch up in the breathing cycle, I get a sharp pang of pain in my upper left chest.  If I’m called upon to do something even moderately strenuous, such as climbing out of bed to go fix a meal, the breathing rate climbs and chest pains start up.

The first thing that happens in the morning is that Deborah comes upstairs to wake me up.  Don’t be judgmental about this; we adore one another but have slept in separate beds for years due to the fact that both of us are light sleepers.  I have her check on me in the morning to make sure I have survived the night.  So we exchange a few brief greetings and a kiss, and then she’s off to work.

Next begins my routine, and it can either turn into an ordeal or become nothing much of anything like one depending on what happens next.  First, I slowly sit upright in bed, bringing both feet to the floor while taking stock of my breathing.  I slowly draw in a breath—in, in, in—STOP.  The stopping point is where the first pain pang hits on the far left side of my chest, if there is one.  So far there has been some chest pain presenting itself this way every day, left over from the dire struggle I had on Monday of last week.  You may recall, right after rising on Labor Day I had a probable P.E. clot thrown off by the cancer that wound up going to my lungs.  This led to severe shortness of breath and a pounding heart that left me scared half to death before the hospice nurse could get here and help get it under control.  My lungs are still sore in the aftermath of that now the way I’d be sore after having my butt massively kicked in a street fight—but hopefully I’ll fully recover soon.  On this particular morning (Tuesday Sept 17) I note a sharp pang of pain near the top of the lung cycle—meaning that the pain hits even though the lung is not quite full.  This is a concern and I file it away to deal with later.

Next concern: Hunger check.  Thank goodness, sitting there in bed I learn that I am hungry.  I say “thank goodness” because it’s no exaggeration to say that I have been in a life-and-death struggle with Mr. Cancer to keep the weight on.  The hunger turns out to be nothing massive but I could use a Pop Tart or a donut or an Eggo or some such.  Time to make the appropriate arrangements.  Very carefully, I step from the bed, find a blue robe and clasp it around myself.  And here comes the quasi-dangerous part:  I have to go downstairs, which I do, one careful and very deliberate step at a time, making sure each foot is securely planted and in place before moving the next one alongside it.  This process complete, I am now downstairs and ready to prepare breakfast.

Next concern:  vom check. Am I queasy? Some mornings I am and this may be one of those mornings.  It’s hard to tell; when nausea is about to strike my body does not give me much advance warning.  No one on my hospice team knows why that is.  I decide to take the appropriate medicine.

Next:  body odor check.  Be forewarned if you ever come to my house, currently I am showering every other day, not necessarily every day.  This is from concern over my body’s weakened condition and in recognition of the fact that slipping in the shower could have dire consequences.  There, you’re on notice.  On this particular morning I’m feeling frisky and decide to take a shower whether I need one or not.  So I do.  The shower tuckers me out.  By the time I’d done, I’m breathing quite heavily.  This is more than an ordeal, it’s a fright.  If the breathing gets away from me then I could go into another panic like I had the previous week, and that would make it hard for me to function.  I could even pass out, I suppose.  I don’t imagine the consequences of that would be good.  When this happened on Monday, I was so sure I was about to keel over that I arranged myself accordingly on the landing so that I would not hit my head going down.

So, back to the reality at hand—I’m a bit winded but it is not serious and is calming down.  There is a drug treatment for this but I decide eat a Pop Tart and go on a donut run first before taking it.  The doctors and nurses all agree that every ounce won in the fight to gain weight is an ounce won in the fight to beat the cancer—or at least beat it back.  My weight is now back to 172—up from its all time low of 152 when I got home from the hospital the last time, but down from my ideal weight of 178.  I’ve done it primarily through scarfing junk food, I’m ashamed to say, but not totally as Deborah has been fixing me some delightful meals at night.  At any rate, making a concerted effort, I catch my breath and then go on that donut run.  Once back home again, I go to the medicine cabinet, take one 2.0 mg tablet of Dilaudid, which is a fast acting pain killer, followed by one 0.5 mgs of Lorazepam for anxiety, which has been prescribed for my chest pain and nervousness.  I did not take the drugs prior to going on the donut run for obvious reasons; I needed to be able to drive with a clear head.  But now I’ll start to calm down.

Next is writing time and this is really interesting.  Writing under the influence of Lorazepam is a trip in that people keep coming in and out and interrupting me.  Except that they’re not physically there.  Oh, I’m not having a psychotic break or anything like that.  I’m fully capable of distinguishing reality from make believe.  The same thing happens when writing fiction; the characters fill the room and after a while you find yourself interacting with them as if they were really there.  Thank goodness all it takes is a wave of a hand to disperse the crowd.  But if you’re on Lorazepam it might take two waves and the crowd comes back faster.  As an example, I’ll be writing a passage or contemplating one about the cat, and will lean over to direct a comment to the animal, whom I believed I had seen coming into the room and climbing up on the desk chair behind me.  No cat.

Okay, so that’s the physicality of it; my stamina is failing but I am still coping.  The spirituality of the question is more important, though, and I still haven’t addressed that for you.  To wit:  Why write this blog at all given that privacy matters are becoming more and more potentially intrusive?

Initially, before realizing that my cancer was going to be terminal, I maintained the blog just to keep folks up to pace on my book writing efforts—and to my immense delight found that at least some people were hanging onto each and every word of that, a phenomenon I did not foresee.  So I kept that up—right through hospitalization for sepsis that damned near killed me in June.  Entries got a little infrequent given that I couldn’t always physically get to the keyboard to provide updates.  But that didn’t keep concerns from friends, family and readers from flooding in to me, which Deborah would read to me every night via our various social media accounts.  This statement is going to sound very self-aggrandizing, and is suppose that it is.  But that feeling of being loved and followed and cared for cannot be beat.  I will confess to becoming addicted to that.

I recognize in writing this blog today that my English composition is a little more simple, and a little more childlike, than might otherwise be expected of me.  The words and phrases presenting themselves to me contain fewer syllables and are less weighty in their import, but just the same it means the world to me to be able to report that yet again that today I received a package in the mail that makes me feel loved.  Considering that I have done so little toward making others feel similarly loved while being pre-occupied with my own condition brings—well, it makes me misty.  Forgive me if the creative, needy child in me can’t get enough of it and must express those feelings through this blog.

So that is why, having embarked on this thing, rather than take a hard left turn toward the exit once it became clear I’d have to give privacy up to continue, I have pretty much thrown privacy concerns to the winds.  Those of you who’ve accepted the invitation to come along on his journey with me have been so supportive and kind—words fail me.  I am truly blessed.

Which is, of course, a large part of the message I want to get out, and to keep churning out.  Humans often make lifestyle changes because we want to.  Sometimes we make such changes because there simply are no alternatives.  Cancer is one of those.  But if you ever find yourself in my shoes, do not accept the stereotypical notions about what it’s going to be like.  You never know what tomorrow will bring.  What it keeps bringing me is love.  Why would I want to shut the door on that?  I imagine the same will be true for you.

Having said all that—sooner or later the blog will inevitably end.  You will wake up one morning and find that I did not.  I don’t know how much farther down the road that juncture is for us but the road is not infinitely long.  I don’t want my narrative to simply stop one day without any hint as to where it was going.  So I’ve already written the sequel.  Watch this space for more news.  I think it will be fun.  I hope you will continue to take this journey with me and will get as much out of it as I have.


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There is a 50% chance that I will be undergoing some in-patient pain care as soon as this weekend which will take me out of circulation for a few days.  In any case, in my next entry I will be announcing that book I’ve been telling you about.  Stay tuned.

4 comments:

  1. I think it's just absolutely amazing that you can share this with all of us, and I wish you the very happiest birthday of all - eat the whole cake, Forrest. Love and prayers and hugs to you, hang in there, you're doing great. <3

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  2. We are truly blessed by your love and courage. These blogs represent a incredible gift. God Bless.

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  3. Thanks to one and all of you. I appreciate the support and encouragement.

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