More Outage and Aboutage

Well, I have a confession to make.   Now that book #4 is out, My Lifetime of Strange Coincidences and Weird Happenings, my life is taking on an anticlimactic air.   I guess I was more apprehensive about the book’s release than I realized would be the case.  This is not surprising, I suppose, given that I reveal secrets in that book of which maybe three people in my entire life had been aware, and even those folks did not know the dark, painful details.  I tossed and turned over this one.  But it seemed to me that authenticity is the key.  If I’m going to try to convince someone that a series of miracles revolving around attempted suicide changed my life, for the purpose of perhaps inspiring others to value their own lives more, then the details must be authentic or the whole project will be for naught.  And that goes for all the other revelations in the book.  Still, when it comes to giving away privacy rights, you don’t get much more naked than this.

 For those who’ve been asking about the print version, Amazon has now combined both formats onto their product details page.   Go here to find the link for the format you’d like.  Alternatively, you can go to my website, which has links for both the print and Kindle versions.

Now that we are into this anticlimactic period, the question for me is how often should I write?  I am guided somewhat by my late colleague Warren Elly’s blog, from whom I wanted to hear more.  Yet how much do you really want to know about my latest aches, pains, and challenges to my stamina?  I will be guided by the fact that that at least some of you have stuck by me this far and obviously do want to know how my cancer is progressing and the various ways it’s affecting my life.  I am at least as curious as you are about what lies ahead—LOL—and have committed to exploring these issues together with you.  At the same time, I’m guessing that some details really are too mundane to mention.  I’m also guessing that anything I enjoy, you might want to hear about, since so many of you have taken so much time to say how much you care (and it is no exaggeration to say that I may well be alive today only because of the spiritual support of that nature and prayers that have been pouring in).  For that reason I’ll continue to blog about other things as well, including some comedy from my radio show that I haven’t posted yet.  (Curiously I have found that my desire to blog about politics has become greatly diminished; maybe I will let the world blow itself up without me making sardonic comments from the sidelines.)

Here is a snapshot of my daily medical routine.  I take my latest round of pain meds and then go to bed at about 10:30 every night in my little twin powered hospital bed, which I wrote about recently.  I’m able to adjust it for total comfort and I typically get right to sleep.  90 minutes later my first alarm sounds that I’ve had to set up on my smart phone.  Would you believe that I have a total of 9 alarms spaced to go off through the day and night?  That’s right—nine.  If I were in a hospital or in-patient setting, these are the times when a nurse would come in with my medicine, waking me if necessary.  About half are pain meds.  The idea is that to keep ahead of the pain, you’ve got to go get in front of it and beat it down on a regular schedule.  If  you get off schedule, then it becomes so much more difficult to get on top of it and push it back down.  So, I keep to the schedule.  It’s not as aggravating as it might sound.  Typically I take the medicine and go right back to sleep.  Sometimes I will snag a donut to aid me in this process. 

Grabbing a late-night donut may sound silly, but my doctors have advised me repeatedly than an ounce of weight gained is an ounce of life wrested from cancer.  After the second time in the hospital I was down 25 pounds.  I’ve since regained about 15 of that.  You can see it filling around my jawline and belly, but not my legs, which still look like chickens’ legs.  The problem with eating has been twofold:  lack of appetite and lack of taste buds, which died off or were altered somehow during chemo.  The steroids I’m taking help with the appetite issues, and the taste bud problems do not apply to sweet and sour flavors, so my sweet tooth is unaffected.  As a result I’m eating lots of sweets—and doing so guilt-free.

How bad is the pain?  When it’s at its worst it’s typically not agonizing, just intensely annoying.  This will get worse as time goes on.  At its worst now it’s like a hot firebrand sticking in my side where my kidney used to be—I’d call it a 4 or a 5 at its worst on a scale of 10.  It’s not as bad when I’m sitting as it is when I’m lying down trying to go to sleep.  But in either case pain meds tend to bring it down quickly. 

On rare occasion pain might wake me up at night outside of one of these alarm periods.  If that’s the case then I am allowed to take extra medication.  Usually this comes down to one 2mg tablet of Dilaudid to treat aches or pains emanating from the cancerous area where my left kidney used to be; if I ignore it the pain will get continually worse.  But as I’ve said, I’ve been taught not to ignore it and the pain meds do the trick.

The other half of the meds are made up of things designed primarily to deal with side effects of the pain meds; there’s a steroid for appetite enhancement; colaise to head off constipation, which is a real threat for anyone taking pain meds; Prilosec for my gastro-esophageal reflux disease, from which I’ve suffered for years, and so on. 

Upon rising, I take a light breakfast, wash and dress, and then I have to decide whether to read my email, contribute to this blog, or both.  Reading doesn’t take a lot out of me.  Writing does.  I can’t explain it but the energy levels needed to sustain novel writing just aren’t there for the most part, and the level needed to contribute to the blog is just barely there on a good day.  The alternative to either of these activities is to sit in the recliner downstairs, where my meds are continually trying to pull my eyelids down and are usually succeeding to a certain extent.  I do not consider this to be a productive use of my time and feel very guilty about it when I find myself wasting my day away in this fashion.  I could find something to watch on TV I suppose , but again the time-wasting aspect of that seems humongous so I refuse to do it.  The earliest I’ll let myself turn on the tube is 4:00 PM.  Yes, bring on Judge Matthis and the yahoos that grace his court so I can feel good about myself.

The major issue in my life right now is my stamina.  I get out of breath easily.  Going for a walk to the mailbox (450 paces) leaves me, if not quite beat, certainly degraded, with both legs sore from the swelling of deep vein thrombosis, and my lungs pumping from being half out of breath.

Deborah at Charron Winery

Charron Winery

The good news and one of the things that still brings me joy is that I can drive my Mustang without having it take a toll on me.  I do without the pain meds when driving, of course, but so far that seems bearable.  This weekend the wife and I went back to Elgin for more of our wine tour and loved it.  It went better this time; I had no pain upon emerging from the car, although perhaps that is true because I did not walk long distances after getting out, but instead found a seat inside pretty quickly.  It’s very clear there can be no hiking in my future.  In fact, my medical placard allowing me to park in handicapped spots just arrived and I plan to use it, alas.

We went to two wineries this weekend, Charron and Callaghan.  Charron has a wonderful facility and is now offering a picnic basket to go with their wines.  The thing that struck me most about Callaghan was their wine label, which borders on the obscene, LOL.  I’m no prude but even so the label hit me as being remarkable.  Whatever gets you through the night, and all that.  Between the two places we wound up snagging about 5 bottles of wine, for which I used my “mad

We snagged this bottle from Callaghan

money” (having sold a couple of old cameras  and miscellaneous items on Ebay and whatnot).  As I’ve said before, Deborah is really getting into this wine thing; I have no sense for it but really enjoy watching her do it.  I have discovered that once she brings a bottle home, it’s hard to get her to open it—she likes to admire it for a while!  LOL.

I don’t  know how much longer we’ll be able to take little side trips like this one.  This particular junket took us about four hours round trip and did not leave me too bushed or overtaxed.  Let’s put it this way—I was no where near collapse but was tired.  The next logical trip is to Willcox, which has a vigorous winery industry.  After that, perhaps a side trip to Sedona, although I’m not sure exactly what I can do there that would not

Charron Winery

involve walking or hiking.  But perhaps I could get up for a Pink Jeep ride.  That would be good. 

I will be honest and say that it is a downer looking up the road ahead and knowing that diminishing returns lie in front of me.  That is why it’s important to get this stuff done and celebrated now.

Meanwhile, Deborah and I still have each other—and that manifests itself through anything and everything from wine and cheese tasting at home, to board games, sharing various TV programs, good old fashioned conversation, and of course cuddles.  Hopefully it’ll be a long time before the ability to enjoy those items expires.  Of course, you can never know, which is why I wanted to get book #4 out there to you right away.  But I remain optimistic. 

This is what I mean by “fighting cancer.”  No matter how much time I have ahead of me, I plan to make the best of it.

Keep those thoughts and prayers coming.  They mean more than you can know.

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My Lifetime of Strange Coincidences and Weird Happenings.