The fact is that cancer is slowly whittling away at the list of things that I find pleasurable. Those two boots in the photo are one example. I am not an extravagant person. But for years I had fantasized about the idea of owning a pair of hand-crafted Lucchesi burgundy ostrich skin boots. Folks, these are not cheap. Lucchesi arguably makes the best boot in existence. I found myself coveting—for years—a $1,500 pair of boots. Then I met a newscast producer in Tampa who confessed to having plopped down $2,000 for a designer purse—and I knew she wasn’t kidding because a short time later I happened to be in Saks Fifth Avenue in New York City and was able to find the exact purse for the price mentioned featured in a locked glass display case beneath a spotlight, lacking only an angelic choir to call attention to and celebrate its existence. This producer had no other extravagances that I knew of; just that one. Sometimes you just gotta have what you just gotta have. And after all, doesn’t spending money—yes, even if it is a bit over the top—help the economy whether you’re buying clothes or a can of Spaghetti-O’s (which I also do)? So about six years ago I took part of the royalty check that I earn through being co-author of a college text book on broadcast news writing, and I ordered those boots.
“Boots?” you ask, incredulously. Yeah, boots. I learned to wear boots with suits in Texas, where it’s done all the time, and loved it. I de-emphasized the habit in Florida, but when I found myself back in the Southwest (Albuquerque, to be precise), I decided to go for it.
|My last outing with my favorite boots|
Ironically, the last outing was just a few weeks ago, when the wife and I celebrated our 30th wedding anniversary. I’m suffering from deep vein thrombosis in my right leg, which in fact put me in the hospital for several days while doctors tried to get the swelling down (my right leg swelled up to twice the size of the left). One of the lingering symptoms of that is swollen ankles. But I wear compression stockings to cope with the swelling. On the night of our anniversary trip to the steak house, I had no problem getting the boots on and off thanks to those stockings.
A few days ago I had a lunch appointment and decided to show off the boots again. Now, since the last time I wore the boots, the left ankle has swollen even more. I found I could get the boots on but they were uncomfortable. This left me to worry whether the ankle might try to swell even more while I was wearing them. I had lost a great deal of stamina during my medical crisis on Monday, and was left to wonder whether I’d have the physical strength to tug them off again after lunch, especially if the ankles swelled further. So, I aborted the mission and wound up wearing sneakers to my lunch appointment. I was, in fact, barely able to get the boots off my feet in order to change into the sneakers, so I think my concerns were valid.
|At Flemings with my lovely bride.|
What else? You know, it occurs to me that I haven’t walked to the mailbox since Monday’s shortness of breath crisis. Do I have the stamina to do that? Let’s find out, right this very second. I’ll be right back. If I don’t return within a half hour, call the authorities.
Okay, I made it. It is about a 500-pace round trip to the mailboxes. My blood pressure now reads as 108/72, pulse 129. You see the problem; my heart is pounding out of its chest. I don’t feel winded at the moment but I know that my stamina is tapped out and that what I need now is chair rest. I do a lot of chair resting. In addition, in the aftermath of the walk I’m experiencing a bit of pain in both legs from the thrombosis, and there is some pain in my left side from the cancer. All because of a trip to the mailbox.
This morning my nurse Samantha also found elevated pulse levels, this time from me having done nothing more than climb the stairs to go fetch a prescription bottle. I also discovered after fetching the bottle that I was experiencing chest pain—at a low level, but still it was very disconcerting given the implications. I am now very, very careful about mounting those steps, since that’s what I was doing when Monday’s episode hit. This is me: Right hand firmly on hand rail. Left foot to step. Place weight on foot. Bring right foot up. Carefully place right foot alongside left foot. Place weight on right foot. Lift left foot. Raise left foot to the next step. Carefully place left foot onto the next step. Place full weight on left foot. Repeat. After doing this slowly and deliberately this morning, my heart rate was 129, enough to make me feel a shortness of breath and the chest pain.
For my chest pain, Samantha had me take 2 mg of dilaudid with .5 mg of Lorazepam—drugs I already have on hand—which she said probably would ease the chest pain and knock back the anxiety. It did the trick. That was three and a half hours ago and I’m still feeling the effects of the drugs, which is interesting because similar doses of Lorazepam haven’t seemed to do much to me in the past.
Here’s what else the Lorazepam did. It caused me to zone out.
If you visit one or both of my Facebook pages (which I hope you do often) you may notice that I sometimes produce entries pertaining to promotional opportunities for one or more of my novels. The most recent such opportunity was a blog posting in support of the Arizona Daily Star’s decision to review not one but two of my recent novels, and to give both stellar reviews. What you may not know is that when posting these on my Facebook page, I also go on to post on about four dozen other Facebook pages that are specifically tailored to try to match writers and readers. Such posting is a long, laborious, tedious process but it help keep the lines of communication open between me and readers or potential readers. So, I set about doing that—and found that several times, I had completely zoned out. Floating back to reality wasn’t quite like emerging to consciousness from a state of unconsciousness, but I’d have to shake my head to clear it of cobwebs and then have to retrace my footsteps to figure out what I was doing and where I was in the posting process for that particular page. I was not performing elaborate work—we’re talking a picture post, a text post, cut, copy repeat. So if I’m having trouble doing that, can you imagine the problems I’m facing trying to write a blog like this one—or to keep up the energy levels required to focus on a novel manuscript? It’s difficult. So, I’d say, all in all, I would not strike the “joy of writing” from my list just yet but my capacity to take delight at the keyboard has been greatly diminished. It varies according to the level of meds I’m on at the moment, and I’m always on something (starting with slow-acting time-released meds in the morning).
I’ve been dreading this one: One of my favorite foods on planet earth is bacon and scrambled eggs. Since I began suffering from problems with my taste buds post-chemo several weeks ago, I’ve been worried about what would happen the next time I tried to sample bacon and eggs. Because let me be frank, folks: Taking this pleasure away from me would be cruel and unusual punishment. This morning I finally worked up the courage to fix myself a plate. It was enjoyable even though I could tell the taste buds were still in a bit of a rebellion. I’d say the results were about 75% of what I was hoping for, meaning that I’ll do this again but without the level of enjoyment to which I’d become accustomed, sad to say.
I’m finding that the biggest disappointments are with restaurant meals that I’ve had before. I know how these “should” taste and they don’t always meet expectations. But sometimes they do. It’s a hit or miss kind of thing. Interestingly, my sweet tooth is completely unaffected. The doctors have been quite clear in saying that every pound counts in the war against cancer, and that if I want to eat something, I should. My belt actually is now a notch tighter, which is misleading because my overall weight is still down by ten pounds. But I’m padding in belly fat, and my face is not as gaunt, or so I’m told. Pardon my gallows humor, but I’m scarfing down Baby Ruths and chocolate donuts like there’s no tomorrow.
Also on the down side is that Quarter Pounders with Cheese, McDonald’s french fries and hash browns all are lost to me now. The memory of what these should taste like compared to what they actually do taste like for me now is just too disappointing. Not every fast food dish is a problem, though. You can still bring on Mickey D’s chicken sammich and also Burger King’s.
Certain disappointments aside, all is not lost in taste bud world. Lately Deborah and I have been discovering new taste bud sensations together. Sunday night she prepared a barbecue chicken dinner that was to die for. Since I had no prior experience with this particular preparation, I had nothing to compare it to. In other words, there were no expectations to meet in terms of what the dish “should” taste like. It tasted fab and I ate every bit of it right up, and have now developed a craving for it. That is a good sign and also a promise that the joy of eating, while having been altered, has not been lost to me altogether.
Let’s see, what else? I’m also suffering from myclonic jerks—sometimes known as “sleep starts.” I’ll be sitting in the chair and without warning a limb or even my whole body will give off a sudden, sharp jerk, almost as if I were about to doze off. That can be disconcerting. It usually happens when I’m sitting and relaxing, but normally, I don’t doze off and wasn’t about to—I simply get the jerk. Sometimes they’re quite strenuous, bordering on violent. No doubt this is some kind of cumulative side effect from the many meds I’m taking.
It’s almost as if I have two bodies. One of them is the normal “me” that I have always taken for granted, the one that gets up in the morning and allows me to go about my daily business without having to give a second thought to anything health related. That body is gone, of course, but its memory is still there and it’s the one I step into, almost like a phantom limb, every morning. And then there is the new body, the one that is continually throwing surprises at me, such as the PE clot episode on Monday that scared me out of my mind. Sometimes my “new” body throws things at me that make no sense but which are not, in and of themselves, frightening. Two days ago, for instance, suddenly I could not get enough soda to drink. Water or Gatorade would not do. I had to have Dr. Peppers, and I did, downing one after another (these were diet sodas—despite my need for calories I have not been able to bring myself to go back to the old sugary drink habit that I dumped 15 years ago). Where all that liquid went is a mystery; I didn’t feel the need for increased trips to the bathroom, and after about 4 hours the cravings, and the “drinking binge” if you can call it that stopped.
This is also the same body that won’t let me know in advance if this is going to be a vom day. I have to keep a basin nearby. Now, I have a drug at my disposal (the hospice people are great about seeing to those kinds of needs) that prevents nausea pretty well, but I don’t like to take it because it makes me drowsy. But the problem is, my body doesn’t warn me if this is going to be a problem day. I get maybe 15 seconds warning—there is no precursor nausea or queasiness. I get barely enough warning to make a dash for that basin. So, every day I have to try to guess whether to take the medicine. Because of that, I tend to tailor it around whatever activities I have planned for that day. (Yes, “Would this be a bad day for a surprise vom?” really is a question I have to ask in the mornings and afternoons). Why is my body doing this to me? My nurses can’t say with certainty.
Other pleasures remain in intact. Cuddling—enough said. Talking—almost as good. I look forward to spending time with my georgous wife every evening. We talk about a wide array of subjects and also play old music and indulge in board games on the weekend—well, Trivial Pursuit for now but our ambitions don’t stop there. I am finding that I have to sit at the kitchen table now to do this, though, as opposed to sitting cross-legged on the floor, which used to be more comfortable but now no longer is because of cancer pain that’s been steadily increasing in my left flank.
|Deborah and Ellis|
|Mina helps Deborah|
Friday night movies—there’s sort of a drought of good movies going on right now but movie watching on the weekends has been a mainstay of our entertainment agenda for years and I expect it will continue to be so.
|Out and about in Elgin|
Nostalgia—Deborah and I have a huge collection of photographs which I scanned in and converted to a digital format years ago. We have been spending 45 minutes or so each night putting those up on the TV via the Blu-ray
Now the dark side. Monday’s episode of PE clotting was minor in the scheme of things. I spent 5 minutes not knowing whether I would be able to catch my breath or not, and then another several hours calming down. But boy does this serve as a wake-up call. Cancer patients throw off blood clots. It’s what we do. The next one could be fatal and it could come without any warning, just as this one did.
This past April a colleague of mine named Warren Elly passed away from cancer. His cancer profile was somewhat similar to mine—metastatic cancer in his abdomen, in a very aggressive form. He went through two brutal rounds of chemo and was planning a third when he suddenly decided enough was enough. Actually, “suddenly” is not a fair word—the first attempt at that third round of chemo had to be aborted when his heart rate went through the roof, after which he decided to give up trying again, given the poor results to date. His doctor seemed somewhat sympathetic to that decision.
Warren kept a blog. I’ve been steeling myself to read it and finally did that this week. Mainly I was curious to know how much advance warning he seemed to get before passing away.
The answer was disturbing. If he got any advance warning that death was imminent, there’s no indication of it in the blog. His posts became less frequent, and then one day it turned out that his most recent post was the final one. It was short. He stated that he regretted having to turn away visitors, because receiving them was “exhausting,” and that’s the only reference in that last entry to his health. In previous entries he’d also made reference to stamina and weight issues, and had expressed hope that the effects of the chemotherapy would soon begin to wash out of his system so that he could begin a recovery. Warren died six days after that final entry.
Had my PE clot incident on Monday been more severe—had I died that day—then the last entry you would have seen from me on my blog would have been the one about my bladder cancer being in remission following a wonderful weekend. The wonderful weekend part was not a bad thing to have shared with you as my final thought had that turned out to be the case. There is certainly no hint in that entry that death is or might be imminent.
And the truth is, I don’t know that death is imminent. I do know that it could be. The take-away I want everyone to have is that I have so enjoyed my life and will continue to do so despite the relentless give-backs I’m having to surrender in terms of personal ability as time goes on. I still do embrace that sunrise every single morning and I still do take such great joy from my wife and her cats (let’s be honest—they are hers but I share in the delight they bring her, possibly more than she does). And I enjoy other things too—everything from this week’s soaking rain to the $1.00 can of Spaghetti-O’s I had for lunch. LOL—my needs are simple.
If I were to die overnight, this blog entry you are reading now would be close to the final comments I’d want you to have, but still would miss the mark. Which brings me to my next subject.
|My next project|
This book, which is shorter than my novels, is not intended to be a money-maker for me by any stretch of the imagination. It will be of strong interest to anyone who’s been following my story recently, and potentially of at least mild interest to anyone whom I’ve touched professionally or personally. The book presents a side of me that most people would never expect, but it isn’t just about the wonder of me. It is about how normal, everyday people can access a wonderful and mysterious side of life that they never knew existed, and perhaps find new inspiration for their lives. Watch this space for more news on that very soon. I just need to make a few more quick adjustments and then we can proceed with publication.
If, God forbid, time is even shorter than I imagined and I don’t get to make the announcement in person, hopefully this blog entry will help you understand what the book is all about. But my hope is that I do have enough time left for us to discuss aspects of the book as this blog continues.
God bless those of you who’ve been following my story and have been providing me encouragement and loving feedback. Your support has meant the world to me. I hope we’ll be able to continue that for some time to come.