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 September 2008 Post Book Essays Change Here and on the Horizon - September 23, 2008 Change Here and on the Horizon - September 23, 2008 What used to be nearly daily posts of essays on this website have turned into monthly ones. It's a reflection of my level of fatigue after 10 months of pretty grueling chemo, not lack of desire. Thanks to the faithful readers who check for a new essay periodically and regularly. I'm so glad to hear from you. I'm surely better than this time last year, when I was coming out of a stent procedure and about to experience two unexpected hospitalizations of nearly a month each, not to mention all the trips back and forth to the edge of There. Although recent treatment has improved my cancer situation, I find myself acutely aware of uncertainty as to what's next on several fronts. Since I wrote last, several things have happened, mostly to the good, but inducing stress of their own, just for their magnitude! First of all, Steve has retired. It was a hard decision but we crunched numbers and decided that with real discipline, we could do it. As we go along, if we decide that he needs to pick up a little part-time work on the side, he'll do that. For now, this is a time for him to regroup and recover from long-term stresses, fatigue, and the melodrama of my medical crises. I've resisted the initial temptation in the early weeks of his time at home to become his "cruise director" (as one friend put it). I'm enjoying his presence and company, but I've also gone on with my life as usual: naps, a little light housekeeping followed by frequent rests and more naps, the occasional lunch with a friend, correspondence, and the usual rounds of medical appointments. I did call him to task after he succumbed to the same temptation and passive response to unstructured time that I had four years ago when I had to stop working, and that was spending most (if not all) of the day in a bathrobe. Man! There's nothing more likely to get you depressed quickly than that! Get up, have some breakfast and then retire the cloth-of-sloth and change into some real-people clothes! We're just now beginning to realize that we have freedom to do with our time as we please and as my energy allows. That's a blessing and a bane. It's easy to get stroke-deprived if you don't plan outings and interactions. We want to be productive, too, as well as build in plenty of time to do things that are relaxing. The trick is how to make those things synonymous, or at least not mutually exclusive. I'm happy right now to hear blues music streaming on Steve's laptop and the air conditioner humming along as he works in the garage, organizing, with the door open so that he can hear the audio on the computer. A few weeks ago, he saw a neurologist who, thankfully, could see nothing obviously wrong that would cause his swallowing problems. He does still have some times of difficulty, especially if he's overtired or sleep-deprived. We'll keep an eye on him. She'll see him again in six months for a follow-up. There's some blood work pending, just to be on the safe side, but we were relieved that nothing dire jumped out on a thorough neuro-based physical and history. I've had an old "companion" revisit me and that's pain. A year ago, I was on a truckload of narcotics and other analgesics to control chest wall pain. After my long autumn hospitalization and the rapid, cold-turkey yank away from the pain stuff that I'd been taking for several months (and once my pleural fluid problems were mostly resolved), I found myself virtually pain-free. Now, I don't recommend coming off narcotics the way they took me off at the hospital. I was absolutely psychotic for several days and anxious for weeks afterwards. But, I'm very grateful that I've been just about pain-free for the past nine months. As a matter of fact, a few months ago, I looked in my little Rubbermaid bin labeled "pain medicines" and realized that I probably had enough old stuff in there from various surgeries that I could be suspected of having an intent to sell! I called my local pharmacy and took a grocery bag of stuff to them to destroy for me, keeping just one small bottle of the lightest stuff available. Well, since about mid-August, I've been having pain again. It's really unsettling, vague, inconsistent, in various places on my chest and back, and a damned nuisance. I spoke to my Nashville and my Chattanooga oncologists about it. Physicals and thorough auscultation and percussion of my chest ruled out my greatest fear, which was the return of fluid to my chest. A recent CT also showed one piece of really good news: the resolution, finally, of my fluid in the chest. There was none on the CT that I had a week ago, for the first time in over a year. Great news! So why the pain? Since I gave in to taking _ a capsule once or twice a day of the one narcotic I had saved (and had done that with great reluctance), I talked it over with the nurse practitioner in Nashville, when I was there last week. She wrote me another prescription for that pain med, but also encouraged me to try Aleve alone, to see if we were dealing with something largely inflammatory. It's been working! I am still very uncomfortable on my back after more than about 10 minutes, which really cuts into my before-sleep reading, but I've only taken a half dose of the narcotic one time in the last week. We'll do a PET along with the CT scan in November to be sure that nothing else is cooking. The other lesions we've been watching in my chest wall were stable. I had a couple of areas that might be emerging positive lymph nodes or could just be an inflammatory response to my chemo. We'll know more in November with the next PET/CT (or sooner, if I get more uncomfortable). Which brings me to the issue of change on the horizon. That vague future date discussed in June, at which time the Nashville doctor was going to consider stopping my treatment with the experimental drug, is November. Now it's not just abstract and off in the future. It's just a little more than a flip of the calendar page away. My body is wiped out from nearly a year of this chemo. It's been working, but there's definitely a price to pay over such a long haul. My blood counts are never in the normal range when it's time to take another treatment. They meet the minimum criteria for getting a treatment, but they're not normal. In August and inspired by the recent summer Olympics games, the nurses teased me, saying that I had made the cut to get my treatment by a "Michael Phelps finish," literally a 7/100 of a point above not having a high enough granulocyte count to take my chemo. So, we'll see what happens in the coming weeks. In the meantime, I'm trying to enjoy every single day, so sweet, sweet as they are. The week before my last treatment, Steve and I went camping. Now this was no rigorous, primitive experience like we usually have. We bought a two-burner propane stove so cooking was easy. No wood fires to scrounge for, build, and maintain. We camped at our county park, right on the lake, about four miles from our house. We got a site with a water tap so that we wouldn't have to carry water, which I just can't do. We were about 300 feet of level ground from the bathhouse. We were a mile from a grocery store. I'm getting to be such a wuss I just don't have the stamina to do the hard stuff. But we enjoyed the outdoors and the lake lapping at the edges of our campsite. Steve fished. We read. And I spent a fair amount of time doing what I do best, which is resting. In this case, in a hammock strung between two trees, next to the lake. Yeah, I guess that I'm in pretty good shape for the shape I'm in!
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