John was kind enough to point out that my novel, The Dark, is getting some good feedback and critical reviews, which is what the two media appearances partially focused on. John also put in a nice plug for my blog, The Bashful Bloviator, writing, “In addition to the three books, available on numerous e-book platforms, Carr's blog is a must read for those who want a frank, pull-no-punches insight into the cancers that have ravaged his body, and how the treatments have, in many ways, been as debilitating as the unforgiving disease. A lot of Carr's lighthearted radio parodies are available at bashfulbloviator as well. It's also where you can find the audio to his interview with Parisi and, indeed, information on where to find the three books already completed.”
John also pointed out that I’m working on a fourth book which will be a bit different from the other three offerings. This one will focus on a lifetime of precognitions and foreshadowings that helped set the stage for “the mother of all premonitions,” which was the one that warned me to act now if I planned to take any steps at all to pursue my fiction writing ambitions. I don’t have a publication date for that one yet. I still have some work to do publicizing The Dark and don’t want to distract from those efforts too much right now. But rest assured, it’s coming.
I haven’t written much about my disease on my blog recently, mainly because it’s in a fairly boring stage right now and I wasn’t sure folks would be interested in the mundane details of what I’m going through. But John’s column reminds me that people are following this and have taken an interest, so here goes. Right now it’s a battle for stamina. When I get to my feet, two things happen. One, my right leg starts to hurt. This is due to the aftereffects of the deep vein thrombosis that led to my second hospitalization in June (which seems like yesterday to me). Essentially the leg is filled with clots. They’ve been slowly dissipating, and I do mean slowly. If you look closely you can see that my right leg is swollen compared to the left. This was much more noticeable when I first came down with the problem, which erupted without warning one night, leaving me crippled and scared, and bringing with it my first ambulance ride in life. That night and for many days afterwards, my right leg was three times the size of the left, and hurt like the dickens. I had a hard time getting around even with the help of a walker. Any weight on the leg at all brought severe pain, and when standing I could not lift it more than about an inch from the floor.
Now the pain is still there, but not quite as intense as it was. I find that if I pace myself, I can get around okay for short distances. If I push it too far, then I have to sit down; no other remedy will do. Once seated the leg pain goes away completely within a few moments.
Speaking of that leg, let me tell you something about the hospice service I belong to, Casa de la Luz. Their motto seems to be, “You want it, you got it, and we mean right now.” They keep in constant contact with me, and a nurse visits me once a week in person. This week I asked her whether we might be at the point where a compression stocking would be beneficial for my right leg. Folks, let me just tell you that two hours later, one was delivered to my actual doorstep. It seems to be helping, too. And that’s not all. The hospice delivers my refilled prescriptions (I’m taking about ten different medications) right to my door once a week, and if I need something new, that gets delivered within hours.
I mentioned that two things happen when I get to my feet. Here’s the other. The clock begins ticking on how long I can remain on my feet. When I am seated, at present my cancerous masses (one where my left kidney used to be, another in my sigmoid colon) are silent. They don’t cause my any pain. Nor do I feel tired. But when I get to my feet, that changes. After only a few minutes of walking—say to the mailbox, or up and down a grocery aisle—pain sets up in my back, and proceeds to get worse and worse until I absolutely have to take a break and sit down. In addition, extreme fatigue sets in. Technically, I probably should be in a wheelchair at this point for anything requiring me to get out and about or to be on my feet for more than a few paces. But I plan to resist that for as long as I can. The good news is that when I do sit down, I recover fairly quickly from the pain, although the fatigue takes longer to dissipate. So I’m not spending my days in chronic pain.
The main issue with pain is at night. Before I went on hospice care, my pain was not well managed. I could only find one comfortable position in bed—which isn’t enough, given the fact that every night I get a bad case of the tossy-turnies. The problem is that if I don’t change my position, then that back pain I mentioned starts to set up on me and nag at me—not in an excruciating way, mind you, but enough to where every night I’d have to come downstairs and take a break, stretching myself out in my recliner, where I could find one pain-free position from which I did not feel the urge to toss and turn so often. But this meant that every night, I was losing sleep, and it was affecting everything.
Now the hospice folks have me on just the right level of medications that the night-time pain is not, at the moment, an issue. I’m sleeping through the night every night. In fact, I have not slept this well in years.
Stamina and disability issues aside, the biggest detraction from my quality of life at the moment is loss of taste. This started with the chemo. There is some thought that perhaps the painkillers I’m taking contribute to the problem. Interestingly, not all taste buds are affected equally. Taste buds associated with enjoying meat are most affected; hamburgers taste pretty lackluster, which is killing me. Those associated with sweets are least affected. And my appetite has come back recently due to steroids they’re giving me for that purpose. So I find myself eating a lot of candy. That can’t possibly be good for me, I know. But the doctors have been quite adamant: if you want to eat something, then do! Right now, I’m dropping pounds, and that is a losing proposition which definitely cannot go on forever. The calories have to keep coming in.
The second biggest detraction from my quality of life are my energy levels. I need for them to remain fairly high so that I can write, which requires strong mental acuity and a bit of passion. It’s not there and I don’t know if it’ll come back or not. Sometimes when I’m trying to write, after only a short amount of time my eyes will cross and extreme drowsiness will wash over me, causing me to have to discontinue those efforts until some other time. I had toyed with the idea of a fifth or maybe six book; now, I’m not so sure I have the physical ability to do it. We’ll see. But I did get my bucket list items already checked off in this regard, so I have no gripes coming. I haven’t given up although I find my writing schedule has been sharply curtailed. Meanwhile I do a lot of reading and—yes, sad to say—watching of television. You go, Judge Mathis.
I have a feeling I’m going to be in a long, dry stretch of this kind of thing. I’m losing ground against the cancer every time I hit the scales, but I’m not in the end stage just yet. No one can really say how long off that is. But one thing is certain. I’d rather be at this stage of ability, or disability as the case may be, than be undergoing more chemo. This was driven home for me the night a doctor told me that my deep vein thrombosis would take 6 months to resolve itself. I’d been previously told that six months was about the time I have left, period, so imagine my joy at being told that I’m going to be spending the time recovering from the past round of chemo that didn’t work. No way in the world do I want to add on top of that sickness from a new round of chemo, especially given what chemo did do me the last time I took it (two hospitalizations, from which I am still feeling the effects). Instead I’ll stand pat with what I’ve got.
I don’t like being disabled, not one bit. Today I had to hire a landscaping company to trim the hedges in my back yard. I was forced to do it because I discovered to my chagrin three months ago that I don’t have the least ability to do it myself. In June, I tried clipping the four smallest of them myself—which should have been an easy, ten minute job—and damned near passed out when my stamina cratered, extreme fatigue set in and chronic pain gripped my back. It is difficult knowing that I’ve turned a corner on my physical ability that I will never unturn.
Still and all, I get tremendous satisfaction out of some very small things. Friday night saw me to bed with a nice little thunderstorm at my house that lasted probably about an hour from start to finish, if you count the time it spent receding into the distance. The next day I actually got out and drove around in a monsoon storm, which was a blast. And this morning a nice little thundershower began the day with the roar of falling rain on the roof. It was delicious and the feeling that I experienced something special has stayed with me all day.
I love that.
And of course, there’s the main thing. Deborah and I continue to really enjoy the joy of each other’s company. This past weekend we opened up our badly dated Trivial Pursuit board game, put on some old music and amused ourselves capitally. Next weekend I’m going to drag out my old deck of Rook cards and refresh myself and the bride on a game I used to really enjoy. And if my stamina remains decent for a while, then in the weekends ahead we may do a couple of close-in road trips, maybe to some of the local wineries if I can pull it off without too much walking. (Driving in the car does not seem to be an issue).
Life is not all bad. In fact, I would say it’s good.
###
No comments:
Post a Comment