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Chapter Six - A Short in My System (October – December 2019)
March 08, 2020
- 43 min readThe Great Cancer Adventure
Chapter Six - A Short in My System (October – December 2019)
10/3/2019
Here at CTCA, we've just met with the Oncology Doc to discuss today's scan. The primary tumor in the esophagus looks to be contained, and my various bits are stable or smaller. A couple of tiny spots in one lung, likely an infection of some sort, and the home of my persistent pet cough, which I have nicknamed "Spot". Sounds like good news on this end. Unlike the cough. Which sounds terrible. And distinct. The Champ tells me she can find me in a crowd.
Indeed, the primary esophageal tumor is still there, as referenced above, but since I don’t get an endoscopy and possible cryotherapy for a few weeks yet, there’s not much more to say. Protocols call for my having the endo/cryo in three weeks, but since Dr. V. is away then, I’m putting this off, with the backing of my sweetie, Betty, and our Oncology Doc, until the following visit to CTCA, i.e., six weeks from today, rather than three. While confident that there are many good people there, since I am in his esophageal cancer cryotherapy study, I want Dr.V to do the procedure, rather than someone who needs the practice. Sure, I don’t know what goes on inside the operating room, but even if he were to encourage a new and younger colleague to practice on me, he would still be there just in case, so I’m confident I’m in good hands no matter what happens when I’m under.
In addition to the scan and oncology appointments (plural, because this includes a visit with the nurse as well as the Doc or PA) and another 46 hour 5FU infusion, we had some other appointments, as well. I had a hand message to see if it might give me some relief with my neuropathy, an appointment with a PT there who used a machine to stimulate with electronic impulses my hands and feet toward the same end and saw the acupuncturist as well for this, same purpose. Unfortunately, none of that seems to have accomplished much, and I am disappointed at that, but there's not much I can do about it. This "clumsiness" is supposed to ameliorate itself over time, but even now, a couple of months after dropping the offending component of my previous chemo cocktail (Folfox without the Oxaliplatin becomes 5FU), I'm still having trouble buttoning and unbuttoning shirts, buttoning and zipping up my trousers, finding things in my pocket by touch, among other losses. I often drop things (but not coffee, or not coffee yet!), which is also annoying. And, while my typing seems to have gotten marginally better, I still have to go over too many words too many times.
Also, I met, and not for the first time, with one of the naturopathic oncology providers on staff who recommended some additional "yard clippings" (my term for these recommended vitamins, minerals, and herbs, mostly in capsule form) to boost my immune system; while typically skeptical of such things, what they've recommended seems to be harmless at worse (e.g., sesame seed oil, rather than olive oil) and offers some expectation of helping fight my cancer. I'm might be going down for the count eventually, but I'm going down swinging.
10/11/2019
I received a call yesterday from one of the nurses on my CTCA Care Management Team, checking up on me a week or so after my last visit. They do not do this every time, but it's been more often than not since I've been on Folfox/5FU. I complained about the neuropathy and how I do not seem to have made all that much progress after dropping Oxaliplatin a couple of months earlier, whereupon I was told that this would take more than just a couple of months. Somehow I had it in mind I would be further along than this, but maybe I'm the victim of wishful thinking rather than miscommunication.
Zen calendar reading for yesterday says, “The torch of doubt and chaos, this is what the sage steers by.” I might be becoming a sage for I have more than a modicum of doubt at times though not much chaos, for which I am grateful.
10/14/2019
I've had a few occasions over the past several months when my left leg suddenly seemed like it was asleep, but, while this is worrying, it's really not been much of a concern, since it didn't affect my balance, or it didn't affect my balance for long (that is to say, I was not in any danger of taking a spill), so I was able to work around it, as it were, and within a step or two my leg "woke up" as if nothing happened. I know I have spinal stenosis, due to curvature of the spine among other reasons, so, having been warned of the loss of sensation due to this, I wasn't surprised.
However, over this past weekend, I had two separate occasions when my left leg, which is the “good one”, seemed to have completely lost any muscle capacity. The first time, I was just stepping onto the concrete basement floor from having gone down the stairs. And so, since I was in motion in a precarious direction, rather than reaching for something that might have spun me around before crashing (thus, possibly re-dislocating my artificial hip, something I am highly motivated to avoid), I purposely landed on both knees, with no harm done, really, from being unable to stay on my feet. The second time could have been more eventful, as I was stepping backward, away from the kitchen sink, when this happened. On this occasion, I was able to grab onto the kitchen sink and counter, so I did not fall. First thing today, Monday morning, I called the Orthopedic Spine Doc and got an appointment with his Nurse Practitioner.
Later on that morning (that is, between booking the appointment and actually keeping it), I had a previously scheduled appointment with the Orthopedic/Oncology PT who put me through my paces and was complimentary about how much smoother I can walk than the last time she saw me some months ago and how much stronger I am now than I was then. After the last exercise and after all this praise, I felt like my left leg was asleep. I was in no danger of falling this time, as the weakness was more fleeting, but it was disturbing. On our way to see the Ortho NP and the Spine Guy, Betty and I heard an NPR program on cancer where the expert (I didn't catch the name nor his credentials), said that we all have thousands of times in our lives when cancer cells show up, but in almost all cases our immune system takes care of these problems before they can cause any harm. If that's literally true, that would explain a great deal about "Johnny Dancer".
While we met separately with the Ortho NP and the Spine Doc, between the two of them I gave them a complete account of what had happened. The NP put me through my paces, and she also seemed impressed with how strong I am, certainly under the circumstances. Just before she went to bring in the Spine Guy, she asked if my having a steroid shot would be compatible with my chemo. When I responded that I did not know but could probably find out by calling my CTCA Care Team (another advantage of going there!), she said never mind, as the Spine Doc might not want to go that way.
Turns out that he did not want to go that way. He said that having chemo for cancer, I was not a good candidate for surgery; and since I could not isolate any particular site of pain or discomfort, he didn't know where to inject me; in other words, he didn't have a good answer for my problem. He suggested that I take fall precautions, which included using my cane, which I always have nearby, or using a walker. Since a walker would not help much in the event of weakness resulting in falling backward and might get in the way and cause a greater problem, I'm going to try to be even more careful and keep the cane even closer. For example, when I go out in the morning to get the paper, I'll use my cane, something I had not been doing. I might walk more, using my cane of course, also. He did prescribe more PT, focusing on spinal issues, posture, etc., and trying to isolate muscle weakness; if a muscle group is isolated, then he might inject there.
I have a follow-up appointment with the Nurse Practitioner and if necessary I can see one of the other Spine Docs, but not him, as he's retiring. He's a likable guy, and I got the impression that, if surgery might have been an option, our conversation might have gone differently, so, while I'm disappointed that I don't have much in the way of an answer, I can't fault him. I'm in a real jam, I know, and maybe some of this is on me for not speaking up sooner. In my defense, however, until this weekend, I could attribute this to (mild?) spinal stenosis, something I knew I had and had been told several years ago that if it progressed, then surgery would be indicted, again, something that's not prudent in my case. If now it's just gotten worse, as seems to be the case, and since surgery seems to be out of the question and all I can do about it is be more careful and have even more PT, then I'll be more careful and have more PT.
Even so, both The Champ and I are bummed. As I have been frequently reminded, while auditing our friend, Kellie's, Military History classes, "Hope is not a strategy." It's not much of an Action Plan either. I will try not to fall, certainly, and I will endeavor to carry myself in a way that I might avoid a bad outcome if I do fall. And I will continue with the PT, working perhaps harder with her and by myself at the gym to build strength and balance. I do have a follow-up appointment scheduled, as noted above, and I will call before that time if this doesn’t work. All of which is to say, I will hold up my end of things. I just wish I were a little more convinced.
10/16/2019
Today, I had my most recent PT session with J., who’s been seeing me, off and on, for going on two years now. At her request, immediately after the appointment with him, I had let her know via e-mail the gist of what the Spine Ortho Guy had said about what should be done for my recent spill and near spill. Seeing her today, instead of focusing on how far I had come since dislocating my artificial hip in December 2017, which was how our conversations had been going since seeing her most recently, she concentrated on how much further I might have to go to walk even more fluidly. She put me through my paces, gently of course, on the treadmill at 1.9 miles an hour, to identify any weakness, just as the Spine Guy had suggested she should; and then held my hip in place as I did some strengthening exercises afterward directed toward that weakness.
Having taken steps to address the second of his two recommendations (don’t fall and get the PT to identify and work on any weakness), she suggested I make an appointment with the Hip Guy to make certain he was in the loop and in agreement with the Spine Guy’s recommendations. I wish I could identify a site he could inject to take the best advantage of his expertise, but so far, nothing, and perhaps the Hip Guy, in addition to being kept informed, might have some good ideas about fall prevention.
As it develops, after telling his scheduler of my most recent exploits, I was able today to get an appointment with the Hip Guy for tomorrow and will report on what he says in the next day or so. Or at least that’s the plan. In the meanwhile, having posted something yesterday on social media about muscles seeming becoming spontaneously narcoleptic (my description and not any kind of “official” diagnosis), I heard from two male friends with persistent back troubles who have had similar experiences. One is about my age and in otherwise good health, and the other, who is also in otherwise good health, is about a decade or so younger, which makes me wonder just how common this is. Both have had back surgery, something I’d like to avoid, but, as noted previously, am apparently not in line for anyway, due to being treated with chemotherapy for cancer.
Hopefully, the Hip Guy appreciates dark humor, as I plan on telling him something like this, “Look, just come up with something that keeps me going for about three years or so. After that, almost certainly my string will run out, if not before then, and then you’ll be off the hook.” The Spine Guy is retiring at the end of this month and maybe the Hip Guy will retire soon as well, as he looks to be about that age. I hope the Hip Doc doesn’t go earlier than originally planned because of me, though likely as he approaches leaving his practice, problem cases such as mine, perhaps weigh more heavily than they might have done earlier in his career.
Make no mistake, the Hip Guy is one of the reasons I’m still upright. I didn’t have my hip replaced until May 2013, shortly after the pain was unmanageable, but on x-ray, it could have been done much sooner than that. Dr. B told me way back then that I ought not to have this done until it hurt so bad I couldn’t bear it, because of the long recovery time, and that made sense to me at the time and still does. Despite the dislocation and despite the damage that chemo has done, the artificial, replacement joint is still where it needs to be, even if there is much work yet to be done to benefit the soft tissue around that hip.
As I compose this, it strikes me that I’m more than a little afraid that Dr. B. might like to pawn me off onto someone else, just as Dr. S. seemed quite willing to do. That may not be an accurate assessment of reality nor a fair reflection on either of them, but that’s what the deep darkness of fear and misgiving whispers in my ear. In the light away from those shadows, I simply long to get beyond these falls and am afraid that I might not be able to do so with conviction and confidence. I would very much prefer to take my remaining steps, no matter how many there are of them, without this hanging over my head, but we don’t always get what we want, do we?
That “torch of doubt and chaos guiding the Sage,” for me anyway, contains at least a flicker of fear and another of misgiving.
10/18/2019
Yesterday, I met with the Hip Guy and his Physician Assistant, so both are in the loop about my latest escapades. Betty could not be with me, as she had an out-of-town family thing that conflicted, so she showed me how to tape the conversation on my cell phone. (Curious that each of us seems to be our household’s expert on different things technological; never thought of that before now, but it’s true more often than not.)
I met with the PA first, a conversation I taped but erased somehow (Hum! Maybe I needed more training!), so all I had to show for myself was the conversation with the Doc, although the PA was in the room too. While speaking with the PA first, he asked if I had thought of using a walker, and my response to him was an emphatic negative, as, had I been on a walker during the second of the two incidents, I would have fallen backward, as I was heading in that direction when my leg muscles seemed to vanish spontaneously and without warning. Dr. B., having been told about this almost certainly, did not bring that up; instead, he did order an MRI, saying that this would either rule some things out or rule some things in. I’m to keep going to my PT, make an appointment with the Spine Doc in their practice who’s taking over Dr. S.’s patients, and see him (Dr. B.) in a couple of months. Turns out that he and some others are leaving that practice before then and setting up shop nearby, so something was in the wind after all. Not any of my business of course, and I'm going to stay with him no matter whether the new Spine Doc goes or stays, but interesting that I sensed something in the wind.
I also told him, to paraphrase what I had written recently, that, while I thought both him and Dr. S. better men than this, deep in the darkness of misgiving and doubt, I was afraid that he was going to cut me loose. He took it well, I thought, but emphatically told me that he never cut anyone loose. I was relieved and a little embarrassed about being so open with someone who's hardly a "friend", as friendship is not the basis of our doctor/patient relationship when perhaps I ought not to have been either relieved or embarrassed.
When mentioning this to Betty, she asked me why I felt that way. I responded that rough, tough men like me don’t typically speak so openly the Language of the Heart outside the basement of some church and the confines of a Twelve Step Fellowship, whereupon she responded that such rough, tough men often die early of heart attacks. More evidence, I guess, to support the notion that, having had my three score and ten, I’m just an old softy. In any event, despite my embarrassment, I am convinced that speaking out loud thoughts of doubt and fear, whether in the shadows, the light or any physical location, goes a long way to dispel them; and feeling fear does not equal cowardice, perhaps especially when one acts despite the fear. Perhaps, therefore, or so I tell myself, claiming the fear is itself an act of resolution and fortitude, a proof of the spark of life.
I also told Dr. B and his PA that all they had to do was keep me going more or less as I am now for three, additional years, and I will have outlived, even if only by a few months, what my original oncologist, Dr. D., had said this diagnosis had in store for me, i.e., three-five years of good quality of life. After that, I'd be out of the picture. He responded that we'd go for six-ten. Like I said, Dr. B.'s my guy.
I double-checked with CTCA to verify that I hadn't had an MRI there, so my last one was over five years ago, whereupon I called Dr. B.'s office and spoke with their scheduler, who verified that my Med Sup would cover this cost. Wanting to do this sooner rather than later, the MRI’s on for this afternoon. I see Dr. M, my new Spine Doc, in ten days or so, so we have this moving, too. I see the PT, only once next week, as The Champ and I leave Wednesday morning for CTCA and beautiful, downtown Zion, IL and yet another round of chemo. I’m pretty wiped out for about a week or so after an infusion, so I won’t see J, the PT, again until Wednesday week. I see her again that Friday as well so that we can stay on schedule for two times a week as much as possible. In the meantime, while adhering to my hip and back restrictions, I'm pushing myself at the gym.
The Great, Cancer Adventure continues.
10/25/2019
The Champ and I have just returned from CTCA an hour north of Chicago, where we were able to touch all of our bases (oncology physician assistant, oncology nurse, hand massage for neuropathy, infusion of this visit’s Five FU, and PT for neuropathy for hands and feet) in time for her to drive us home that afternoon. Next time I’ll have all that, as well as an endoscopy, along with another cryotherapy if indicated, so we’ll be staying over a second night, but sleeping in our own beds last night was a welcome treat. Always has to be at her suggestion, however, our coming home in the afternoon/evening as opposed to staying another night since she does all the driving on the way back from CTCA. Even immediately after I’m hooked up, it’s not a good idea for me to do much driving other than perhaps the first hour or so, and especially it’s not a good idea when we leave a couple of hours later, as we did this last time, after infusion. By then, I’m into my 72-hour crash.
A little over a week ago I had an appointment with my Hip Doc to follow up on sudden loss of muscle control in one of my legs on a couple of occasions; he ordered an MRI of my spine and suggested I make an appointment with one of their Spine Docs, as mine is retiring a week from yesterday. I did all this, and when I did not see the results of the MRI in my patient portal with that practice, I called to a.) double-check on that and b.) so that I might have the image and report from the MRI sent to CTCA. They’re making me a CD of the MRI image and report, which I’m to collect and mail/ship to CTCA so that they can enter it into my chart there, which I should be able to have access to or at least the report. I’m seeing the Spine Doc next Thursday but am going to that practice on Monday to collect the CD. Got no problem with that.
I did have a problem, however, when I spoke with the Nurse for my Hip Doc and asked him when I might see the report on my patient portal, whereupon he told me that it was their practice that patients not see test results before a consultation with the appropriate doc. I objected pretty loudly to that condescension, but politely so, since I know he's just the messenger, but he needs to know that some of us find this, not only insulting but also Bad Medicine; we need to replace Kentucky Fried Healthcare with some form of Medicare for All, but however it shakes out, there must be transparency. I was able to get the Nurse to tell me that likely the Spine Guy will recommend an injection in the lower spine. At the very least, he did not tell me to call an ambulance immediately and head for the nearest emergency room, which might have been an option on a worst-case scenario, so that’s something. Just as I have the final say in whatever treatment I receive, I don’t want anyone controlling my health information.
During the oncology consult at CTCA yesterday, the PA, whom we have seen a couple of times before, told me us some interesting things, i.e., a.) verifying that unless there is some need to do so, I’ll only see the Oncology Doc when I have a scan, which I did last time, but otherwise I will see him or another of the PA’s, something we knew; he went on to say that I am doing very well, at least according to my blood work, far better than most; b.) having worked in orthopedics for several years before joining CTCA Oncology, where he has been for several years (which marks him an expert or the closest thing there is to one in both disciplines, at least in my opinion), he told me some specific questions to ask the Spine Doc, none of which we had been told previously; I could have surgery, if necessary (I had been told this was not a viable option), as they would suspend treatment for a couple of weeks on both ends, and, while cancer might take some advantage of that window of opportunity, this hiatus would address the chemo/surgical concerns; that a spine steroid injection was not contrary to my chemo, so that’s good news; and that, further good news, if I can continue to tolerate chemo, there’s a chance, based on what they’ve seen in other cases, that I might be able to get beyond cancer after all.
I'm OK, really, if that's not the case for me, since I've had more than my threescore and ten, and I've had, and am still having, a great life, so I'll be ecstatic with an additional three-five years of good quality of life beyond the two I've already been given. Especially if I outlive my father, Major Warren N. Hazel (Ret.), USAF, the Grey Fox, the trickster. I have that Do-Not-Sell-By Date as an alarm on my cell phone, so I'll know if/when I live longer than he did. I've already surpassed the two-year mark, the first milestone my first oncologist told me about, so I've got a good shot at Dad's.
Recently I submitted the first 25,000+ words of this memoir to Amazon Audible in response to a recent Call for Submissions they’ve announced. What I’ve read to date at my Writers Group has been very well received and they’ve encouraged me to look for a publisher for what I’ve done sooner rather than later. Indeed, a piece this long is far too long for a magazine, even an on-line one, and it’s far too short for a book. Amazon, however, has two categories, i.e., one of less than 15,000 words and another of more than 15,000 words, so in good faith I sent this to them, stating that it has not been previously published. I’ve since come to learn that at least some publishers consider social media postings as having been published. That’s disappointing if I am disqualified in that fashion, but The Great Cancer Adventure continues, in the virtual world and in the real one, too, no matter how this works out with Amazon.
11/2/2019
I collected the CD for the MRI taken of my spine a couple of days ago so that I might have it sent to CTCA ahead of my appointment today with the Spine Guy, Dr. M; near that orthopedic practice is a Fed Ex location, and I sent the package overnight so that it would arrive in time for someone to enter it into their system there ahead of my appointment here, just in case Dr. M. found something “disturbing”, yet another quaint euphemism for cancer.
This practice did not want me to have access to the MRI report before their discussing it with me, as I've previously reported. However, when I went to collect the disc, it was in an envelope, and I asked if I might open it in front of the staffer, to make certain that it contained a disc marked for me. It did. That envelope also contained a photocopy of the radiology report, and so I've read this ahead of meeting the Spine Guy after all. Pulling a fast one was not my intent; though I’m certainly capable of doing that, this wasn’t an example of that. I just wanted to be thorough.
Once at home, I faxed it to CTCA Medical Records, having called there for that address and fax number, so they should have both the CD and the report by now. Indeed, I have the report and have read it. A couple of times. Focusing on the summary, the condition of my spine, in many cases, is as it was when I had the first MRI there five years ago, but there’s been some further deterioration. And there’s a sclerotic lesion, which may, or may not, be “disturbing”. Maybe just a pebble to be kicked out of the way along the Great Cancer Adventure trail, or maybe an avalanche blocking the path. We’ll see. In any event, I still do not see why this report had to be kept out of my hands, which is bad enough, and, furthermore, why there were no procedures in place to make certain I couldn’t access this information with essentially no effort on my part; the practice, for example, could have insisted I give them CTCA's address, which I was fully prepared to do so that they could send this directly there, but they selected instead the easy way out on both accounts.
My back's been hurting me a little more each day since before the MRI, and it's hard to ascertain a precipitating event. While I cannot eliminate psychosomatic causes, this feels more like the soft tissue lower back pain I've had before, from an injury resulting from lifting boxes underneath a flight of stairs a couple of decades ago, and have not felt, until now, since it slowly faded away over months. The day before seeing the Spine Guy, I went to my first PT appointment since my last infusion, as I’m wiped out for several days after one of those. The PT seems to be taking things even more slowly with me since those two episodes of my left leg giving out. I’m still doing some strengthening and flexibility exercises, so we’re not merely treading water, and I continue to have a much smoother gait than the last two times she saw me, so that’s something. Also, right after finishing with the PT, I heard from CTCA Medical Records that they’d received the MRI CD and the report I sent, so I am current with them.
When Betty and I met with the Spine Guy, he did go over the MRI and suggested that indeed I might want to have CTCA look into the lesion business. Otherwise, while he acknowledged that the MRI showed that my back and spine had gotten worse, there wasn’t anything conclusive, other than more severe stenosis, which would explain the two episodes of sudden and spectacular loss of muscle use. He had a couple of ideas of where I might be injected, however, and another idea, but we began with the least intrusive notion, which was a steroid injection in the back. I’m to see him again in a couple of weeks to see how this has worked and to discuss the next steps. The Hip Guy is leaving that practice, while the Spine Guy is staying, so that complicates matters. The Spine Guy said they could pass records back and forth, but, while I liked him, I’m not sure how well that will work. We’ll see.
I was able to score tickets to see “Dear Evan Hanson” at the Fox, so we had Date Afternoon at a matinee on Halloween, after sharing a gyro at Best Steak House, an STL institution right across the street from the theater. About the only thing more St. Louis than this is talking about which high school you went to.
Yet another reason to like CTCA is that, in response to the MRI and report I sent them, I got a call yesterday from a member of my Care Management Team, stating that Dr. S., the oncologist, had reviewed the MRI scan and had found no evidence of bone cancer. That’s how medicine needs to be practiced.
Off to Kansas City for the weekend, with niece, Becky, husband Adam, and son Isaac, along with another niece, Katie. There, we had Oklahoma Joe's BBQ for dinner. Quite good dry rub ribs from this famous joint housed in what was once a service station. On top of everything else, I think you can still get gasoline there. The ribs are so good there that, when I dropped one onto the floor, I picked it up, washed it off, and ate it. My immune system might be compromised but I’m not letting good ribs go to waste.
11/7/2019
I frequently post on social media 250-500 word film reviews, many of which are well received by friends who may be too kind, but, after going back and forth on this, I’ve decided not to include any of them in the Great Cancer Adventure, although I do reserve the right to change my mind about this should the spirit move in that direction. Being guided by the “torch of doubt and chaos” means that the path is not always well lit nor the footing consistently sound.
All of which is to say, I’m not going to include what might otherwise be a longer review of “Harriett”, the film that The Babe and I saw last night for Date Night other than to state that it deserves the widest of all possible audiences, not necessarily as a piece of art (though it’s a far better film than the Klan propaganda of D. W. Griffith’s “The Birth of a Nation” and the cloying sentimentality of “Gone with the Wind”), but for what it says about the Republic of these United States even now, a century and a half after slavery was formally abolished.
There’s not much to report on the health angle, other than that we head for CTCA next week, at which time, in addition to the usual appointments, I’m to have an endoscopy and likely another cryotherapy procedure (to "burn" a hole through the tumor inside my esophagus), in as much as from time to time I have a little trouble swallowing certain foods. The peanut butter and pretzel chips I had as part of my lunch today, for example, went down with increasing difficulty towards the end of that meal.
I’ve communicated as much with the CTCA Care Management team to make certain the GI Doc gets a heads up. It’s not my job to determine what treatment is best for me, but it certainly is my job to keep everyone posted on how I’m doing. Or so it seems to me. And it’s my life.
11/11/2019
Over the weekend, we, who seldom get any social invitations, got two for Saturday. One was for an afternoon/evening pig roast hosted by our friends, Mike and Mary. They had probably three-four dozen people who came for barbeque and pot luck sides. They had a brisk, clear day, a perfect fall day, so it remained an outdoor event as planned, though they would have made it work had it snowed as much as it has today as I write this. We had a great time talking to some people we knew and some people we didn’t know, sitting around campfires on bales of hay, participating in and listening to conversations. Nicely done. Great fun.
We would have stayed longer, but we wanted to leave in time to see "Immigrant Song", something friends of ours, Katie and Chet, cooked up to tell stories and sing songs to remind everyone in the audience as if any in that crowd needed reminding, that in the US we’re all in this together, and we all came here from somewhere else, and not always of our own, free will. Quite well done as well. Quite stirring.
(Not long after I shared this, Chet sent me a note, stating, “Immigrant Song is Katie’s vision to allow us to come together and appreciate that most all of us in doing so have come from somewhere else. She has crafted that we all get to tell our story and sing our song. I am so happy that you and Betty were there Saturday night to share in the lift.” That, too, was nicely done!)
During both of these functions, I had the same thought, fleeting more than lingering, I’ve had before here recently which is that “I’ll miss this.” Clearly, while none of us knows how much time we have left, I’m in the end game. I’m embarrassed to say that, had either event taken place earlier in my life, even days before I knew I was ill going on two and a half years ago and even a few weeks ago, I might not have appreciated them as much as I did at the time on Saturday and still do now. I’ve always loved life and appreciated its gift, even when I was bored, but now it’s even sweeter than it has ever been. Why did it take so long to get to this place?
Last night I had even more difficulty swallowing part of a meal. Meat such as turkey or chicken gives me more trouble, more often than anything else, and I had some cold cereal and milk later on in the evening without incident, so this is situational to some extent, though it should not be happening at all. I’m very much relieved that I am scheduled for an endoscopy and that I have already alerted CTCA that it feels to me that I’m due another cryotherapy procedure.
Indeed, as noted above, it's snowing today, maybe four inches so far, with more coming down. From time to time we have snow here in St. Louis this early so, while it's nothing all that unusual and certainly not anything insurmountable, I need to remind myself that, if footing seems even slightly dicey, I should stay home unless it's necessary for me to go outside. PT has done wonders with my recent hip and back problems, and I have not had any episodes of seemingly losing the use of my leg muscles, but there is still the concern about re-dislocating my artificial hip, something I desperately need to avoid. I'm even parking in the driveway and The Champ's parking in the street in front of our house. She also beat me to the snow shovel and de-icer, damn it! (If it's really bad, I defer to her, but if it's only as bad as it was earlier when I came home when we hardly had any accumulation, I easily could have done it.)
PT is going so well in fact that J and I discussed my having only a couple more sessions, so that’s our new plan. The Hip Guy and the first Spine Guy have effectively left it to us to see how much I need. I’ve had, I think, 13 sessions and can have as many as 18 before requesting more, if indicated, but I'm closing in on a diminishing return. And, if I lose ground, the Hip Guy has already told me that he'll order more. Again, this is to make as certain as possible my hip stays in place. I will continue to be deliberate in my actions and prudent in them as well, but I am stronger now, both the PT and I agree than any time since she's been working with me. In fact, I'm stronger now that before I popped the hip in December 2017, as the initial chemo beginning in early October of that year weakened me considerably before the dislocation. There are certain exercises, like rocking back and forth on heels and toes, for example, that I could not do then and can do now easily. The hip is still suspect, however, and looms large as a possible future disaster, so I will do the exercises she’s showed me until we’re done, for now anyway, and I will do them even after that. I can be pretty much counted on to do the work, whatever the work might be.
11/18/2019
The Champ and I are back from our latest visit to CTCA north of Chicago, where I saw an oncology Nurse and Physician's Assistant (the latter being the one we usually see, for continuity), another chemotherapy infusion (treatment being perhaps the most important aspect of these visits), and another endoscopy. I was expecting to have another esophageal cryotherapy, as recently I've had some trouble swallowing, and since I'm in a cryotherapy study this is a procedure that can be given as needed. However, it's not needed, which is both good news and bad news, or so it seems to me.
The good news is that the primary tumor, located inside the esophagus, responded well to the last cryotherapy (even though the GI Doc said there likely some residual, underlying cancer beneath all this scar tissue from the various procedures, of which I have had three) so there’s no reason to have another, at least not just now. The Bad News is that currently there is scar tissue from the three previous cryotherapies interfering with my ability to swallow. He did not show us any photos of his handiwork this time, something he’s done every time before, which frankly concerns me a little since he seems to be quite understandably proud of his handiwork and generous with the photos; and I still have a little trouble swallowing, though not as much as before this latest endoscopy, and I can eat anything I chose. I’m not looking for trouble, but I do wish the Good News hadn’t come with a qualification. But as always, we’ll see what the fates have in store.
While in Zion, since a couple of our appointments were so late in the day, we decided to stay over rather than driving home that day. Consequently, we were able to see "The Twilight Zone: A 60th Anniversary Celebration" on a local movie theater screen. As the title of this program indicates, the "Twilight Zone" first aired more than a half-century ago, so, yes, I found some of the pacing agonizingly slow, and some of the stories have not worn all that well over time, but they were new and crisp when they first appeared; and, indeed, these episodes (except for one where there was no one speaking until the very end) were all dialogue-heavy, but that's never been a shortcoming in my opinion for people sometimes converse with one another using their words, rather than gesturing and grunting.
What I most enjoyed about this three-hour program was the short doc afterward. Sterling, like some other WWII combat vets (e.g., Vonnegut, just to name one), used writing to work through what we would now call PTSD; he had a voice for radio and a face for television, so he was the perfect host for TZ, perhaps especially (as The Babe reminded me) since this was on the air about the same time as "Father Knows Best". He got into network radio and then television when good writing was admired. Yes, he relied on dialogue, but mostly he believed in the critical importance of a good story. Makes him one of the writers I most admire. A National Treasure.
11/24/2019
There’s another scan in my future next we time we go to CTCA, which could always change our plans dramatically, but for right now anyway, since it looks like I’m doing well, we’ve scheduled a couple of trips to visit family over the holidays and another early next year. I think I’m holding my own, or maybe doing even a little better than that, but there are times when taking a nap during the middle of the day seems more a necessity than a great idea and times, too, when I still seem to be having a little trouble swallowing. I'm not due for another endoscopy for another six weeks (apparently the GI Doc wants to get back on a more typical schedule, rather than once every six months, as has been the case here recently) but he can see me sooner than that if necessary. Assuming we continue to see the team at CTCA every three weeks for an infusion, we'll have to make some adjustments anyway, as our trip after the next one is in late December. Perhaps we could visit both CTCA and loved ones Christmas and New Year’s, but as for so many things, we’ll see. We busy!
(A stray thought came the other day which is that soon our granddaughter will be six, so, should the bottom fall out and my string runs out much sooner than it looks now like it might, she’ll be old enough to remember me.)
By now, we long since should have had a settlement check from USAA, our car insurance company, for the total loss of Betty's car, but we do not. Part of the reason for this is 1.) because USAA sent their claims adjuster to the wrong place and 2.) because they gave us, ultimately, three-loss estimates, one preliminary, another representing a substantial but not a total loss and a third representing a total loss. (In their defense, I will allow as how I was called after the total loss was declared, that we could even get a fourth if we wanted to have the car repaired, as ‘there was some repair money left”, but, being mindful of the possibility of substantial structural damage, I opted for the total loss and was told that would be honored.) We cleaned out and said our goodbyes to the Civic, purchased a new vehicle and returned the rental car, so The Champ and I are moving on.
As she posted on social media, Betty’s OK. While about to negotiate a turn, someone jumped a curb, drove into her – at a tangential angle rather than head-on, which is why she was not injured – somehow swerved back over the curb again and into her own lane, went up a hill and finally slammed into someone else. Consequently, since the driver of the other car clearly lost control of her vehicle and also left the scene of an accident, we’re confident that the police report will show that Betty, who was idling in a turn lane minding her own business, was not at fault. And again, she doesn’t seem to be injured, but I’m still watching her, just in case. She’s a wonderful person and my Treasure.
So we do not have our settlement check. I've spoken to several people there at USAA about our claim, expressing my dissatisfaction and dismay at how our claim has been handled. USAA, marketed to active duty military and their dependents, has been used by my family for three generations over more than a half-century by over a dozen of us (even though my late father was the only one of us who served in the Armed Forces) and everything has run smoothly until this incident. The latest snafu is the statement over the telephone by one of their reps that they sent settlement papers, via Fed Ex Air to my home address which we have not received.
Sure, perhaps someone stole the first envelope off my front porch, as these things happen, even though we frequently use various delivery services from various companies to good effect and without incident, so I think something more is taking place, for I was told on Friday afternoon at 4:00 p.m. that they would send a second set of settlement papers that afternoon, with delivery scheduled the next day. That late in the day is likely too late in the day for next day delivery, and even so, the package, unless specifically marked to that effect, might not be delivered on Saturday anyway. More than likely this is yet another example of the lack of attention to detail they've shown elsewhere in this process, something that wouldn't have happened not all that long ago. The company being packed with retired military, whatever interaction would be done right the first time and, somehow, with a salute being conveyed over the telephone. Attention to detail resulting in good service justified the extra premium expense (and they are more pricey than some competitors), but it looks like we're paying the extra expense now without the attention to detail and good service. Because of our history, I'll stick with them for a little while longer, but not forever unless something changes dramatically and soon.
Finally received the paperwork for the settlement check, which I've turned around and sent back to them, so this might have a happy ending soon.
I've had my last PT for various back and hip issues, as I seem to be doing well enough. She's left me with some exercises, which I will do every day I'm at the gym. Hip feels stronger than it has in well over a couple of years, but it's still not as stable as it was before chemotherapy.
12/3/2019
After having informed CTCA via their patient portal over the Thanksgiving weekend about a couple of episodes of having difficulty swallowing, they got back to me earlier today, noting that they've added another consult with the GI Doc to my list of appointments when next we're there. I've also scheduled for another scan that same visit and another round of chemo as well of course, something given every visit. I had an endoscopy last time I was there, which showed no reason to do another cryotherapy just now, so I’m not certain of my options. I’m also seeing the Oncology Doc this time as well, rather than a Physician’s Assistant or Nurse Practitioner, so I’m getting a lot of attention.
I have of course been open with my grown children about my illness. While visiting my daughter, son-in-law, and granddaughter, the latter, who's not yet six, told us that she was planning her wedding. She would, of course, invite her mother, her father, and Betty. Me, too, she said, if I'm still alive.
I don't know why such comments amuse me so, but they do.
12/10/2019
We’ve recently returned from CTCA, where I saw the Oncology Doc rather than a PA (we see the Doc when there is a scan); had an infusion of course, because I get one of those every three weeks these days; and had a GI Consult which led to an endoscopy much earlier than otherwise it would have been scheduled, as I have been having slightly more trouble swallowing as time has gone along for a little more than a month or before the most recent, routine endoscopy. So, in some semblance of order….
Typically, things run smoothly at CTCA. After registration and labs, with port access (there’s this “button” just under the skin in my upper, right chest, used for blood draws and infusions), I had a CT scan, commonly called a CAT scan, which is not the same thing as a PET scan. Per Monsieur Google, “A CT scan shows detailed pictures of tissues and organs inside the body. A PET scan shows abnormal activity." A couple of hours later, to allow time for the scan to be read and a report prepared, we met with the Oncology Doc who explained that, while the primary tumor inside the esophagus is about the same size it was three weeks ago, it has not grown, which is, of course, good news, but the scan did not offer a possible explanation for why I am having difficulty swallowing. Believing that Cause-and-Effect is the strongest force in the universe, not knowing why is bothersome. The good news from the report, however, is not only has the cancer not grown any during that time but also my other bits and pieces have behaved themselves too and some of them have receded, at least for now, into the past. There is no sign of any pesky, lymph node involvement, for example, and there's no evidence in my lungs at all of "Spot", my pet cough. The oncologist is pleased, and it's always good news anytime the oncologist is pleased. More Five FU (indeed, a great name for a cancer chemotherapy) for me later on that day.
I’d had my fourth and final PT session for the neuropathy in my hands and feet, a common side effect from one portion of my chemotherapy cocktail which, because it was so severe (I had all but lost feeling in my feet and had trouble holding things in my hands and fingers), I had to drop it. (Yes, I know that’s a terrible pun, but one I’m rather proud of.) There's a machine that uses electrical impulses, like a strong battery, to stimulate hands and feet, and it works at least to some extent with some people, but it didn’t for me, so I’m dropping this, too. Saying our goodbyes, the PT mentioned that I might want to discuss speech therapy with my oncologist, as this can sometimes help patients who have trouble swallowing. I said I wondered why no one had mentioned this previously, whereupon Betty said that she'd heard someone say this before, which resulted in the PT observing that speech therapy can also help with cognitive retention and memory loss. This anecdote illustrates one of the other things I like most about CTCA, which is that sometimes people, including staff, will play with you in a light, goodhearted manner. There’s often laughter in consultations behind closed doors, casually in hallways and also just standing in line in the cafeteria, chatting with other patients, caregivers and staff. This is not a glum place. And I did raise the speech therapy question in an e-mail to my Care Management Team, and also later that day in the GI Consult. Both said that speech therapy might be useful if my problems swallowing were in my throat, but since I describe mine as constrictions in the area of my esophagus (below the clavicle, as the neck recedes into the chest), their techniques wouldn’t help me.
We had the GI Consult also with a PA, rather than the GI Doc who's done my endoscopies and cryotherapies. Short version of this is that they, too, had seen the CT scan and from my symptoms, wanted to do another endoscopy the next day, even though they had done one just three weeks earlier. The catch, however, is that my GI Doc wasn't available, so I was assigned to another, but that's OK since he would be doing a different procedure anyway. Rather than cryotherapy, he inserted a kind of a balloon and blew up my esophagus in an attempt to widen it. (Which caused Betty to tease me that I would be getting a blow job while under anesthetic, something she was OK with since I wouldn't feel or remember a thing.) After the procedure, there were pictures this time of my esophagus, and there's still the feeling among those folks that my recurring problem with swallowing is the result of ulceration from the cryotherapy which eventually will sort itself out. However, if this problem persists, there are other procedures they can perform to help me get over this hurdle. (For whatever reason, I seemed to be even more groggy after this procedure than any previous ones and had to verify my recollection with The Champ.) Being able to not only tolerate but also enjoy coffee and breakfast within an hour of the procedure, is something that continues to amazes me.
Had an episode last night here at home while sleeping where I felt a considerable burning sensation in the vicinity of the tumor and so got up in the middle of the night and took some Tums. I’ve already reported this by telephone to the CTCA GI lab, but haven’t heard back from anyone there. There was a call yesterday I missed from someone there, so that’s my item number #2 when we connect. Third and fourth are the biopsy results promised by about now and some appointments previously scheduled by them for January which have since been canceled, or at least I cannot find them on my patient portal any longer.
Busy, busy. We are home again, where the adventure continues.
12/22/2019
Doesn’t seem like it of course, but the days are getting longer. Spring is on its way, as of yesterday.
The holidays have thrown off our treatment schedule here at CTCA in a couple of ways. Typically, we travel mid-week, get treated the next day and, if the infusion is earlier enough in the afternoon, we’re home in less than 48 hours or Friday anyway, unless something unusual happens. Due to Christmas being in the middle of the week, we had to schedule travel on Sunday and, with any luck, we’ll be home by Christmas Eve. However, we do want to get back on our usual schedule and are not certain whether our next trip is three weeks from this coming Thursday or three weeks from last Thursday. Also, we’re not certain when my next endoscopy is to be scheduled, as I had one three weeks ago (well, just under three weeks ago) for that “stretching” procedure due to trouble with swallowing. Also, I want to speak with the GI Doc, the one who does the cryotherapy, or someone on the team about something his colleague, who performed the more recently stretching procedure, noted on the photos of his handy work, which I spotted for the first time (so that’s on me) earlier this morning just before we left. Something about whether or not there is a “recurring tumor” where there had been cryotherapy. This caused me to re-read the pathology report from that procedure, which didn’t make any reference to any “recurring tumor”, so I’m not certain where this leaves me/us. All of which is to say, we have scheduling concerns and medical concerns, so, while we’re in the midst of the Holidays (and would have preferred a carefree visit this time), we have business to discuss with our Care Management Team.
Driving up on a Sunday, we noticed traffic was also different. In Chicago, there were several drivers, operating alone, going a hundred miles an hour or faster, weaving in and out of traffic, only to get stuck behind a cluster of cars. Also, apparently, there's such a thing as a "traffic herd", in that from time to time in the middle of nowhere between STL and Chicago a couple of dozen or more cars seem to be traveling together well above the speed limits, monopolizing the passing lane and making no room for anyone to join them. Then, a couple of minutes later, nothing, followed by nothing for additional minutes. Sure, I've seen all kinds of traffic and been stalled for hours at a time on several occasions, but only observed the "traffic herd" for the first time today. Betty says, however, that this is something a Driver's Ed instructor told her about when she was getting her license in high school.
We got some answers when we met with the Oncology Doc who saw us this time, even though there was no scan, rather than our being seen by a PA, which is typically the case. While we were with her, she sent a text to the GI Doc about the next steps, and he wants to do an endoscopy next time and cryotherapy, so that's already on the schedule. She, the Oncology Doc, wants to make certain the 5FU every three weeks is doing its part in my treatment, making certain there's no further spread of disease, so she'll order a scan sooner rather than later (she has some flexibility here) just to make certain. The possibility of recurrent/persistent cancer inside the esophagus, even after my last cryotherapy, which was a couple of months ago, has us all paying closer attention that perhaps some of us, myself certainly, though we might be doing. I thought, even with the difficulty swallowing, that we were cruising along fairly well. And I still think we are. The last scan showed all my various bits behaving themselves and someone from the GI Department called and reminded me that the GI Doc can do cryotherapy pretty much anytime it looks indicted. The Oncology Doc says we don't have many options if the current chemotherapy isn't doing the trick, but again the latest scan showed good marks all the way through, and my labs continue to show good numbers. Also, the GI Doc can kill off any persistent or recurring cancer inside the esophagus with cryotherapy, so we might be right where we need to be. As always, we shall see.
We're home again, thanks to the efforts of The Champ, who drove back. Even early on in the 46-hour chemo infusion cycle, I'm wiped out and nap most of the return trip. Six hours up and six hours back, give or take. A total of some 700 miles. We got this, even though it is a grind on both of us. I got cancer, and so does Betty's husband – go figure.
12/29/2019
I had more trouble bouncing back from this latest infusion than from previous ones, as least with this particular chemotherapy which I’ve been on for months and months, so there’s sufficient reason to wonder if this is the 'new normal" (feeling dramatically more exhausted and sleeping for much of a couple of days after completion of a treatment round) or whether I picked up one of the many bugs going around this time of year and thus this is a passing thing. Also, if this looks like it might be anything other than an anomaly, and wouldn't that be nice, mightn’t I reasonably expect this to become even worse over time due to the oft-cited “cumulative effect” of chemotherapy? All of which is to say, will I ever find myself wondering all too soon, or at least at some point if interrupting or discontinuing treatment is something that makes sense? I’ve heard that sometimes people choose to remain themselves for as long as they can, even if this shortens their lives, rather than subject themselves to treatments which no longer offer a scant chance of success and debilitate them in the process. I don’t know if this is where I am yet, nor if I ever will get to this point, but things feel like they may be different now. As always, however, we shall see. Looking at this from a different perspective, I’m closing in on 40,000 words in the cancer survivor’s memoir (so far, anyway!) I’m keeping of this journey, The Great Cancer Adventure, which is about half-way to the size that a book ought to be. Having last a little over two years, there’s at least some good chance I’ll make it to five years, which ought to give me enough time to finish the manuscript and spend time looking for a publisher. One should have goals. And this puts me in a race.
We are just back, Betty and I, from seeing the (grown) kids and the grand, along with a brother, a niece, three great-nieces, and little Alice Leech of Levi Road, my mother, who's hanging by a thread. I did get a moment with her, reminding her who I was and that when I was my granddaughter's age, almost six, I used to sit quietly on the front porch until the adults forgot I was there with them and then heard, among others, her, my dad, and maternal grandparents start telling the good stories. She chuckled just like she used to do and looked at me for a minute, so we had a connection. Merry Christmas, Mom.
I was able to speak with one of the nurses on my CTCA Care Team, who also checked in with the Oncology Doc's PA, and consequently have at least some sense where I am now; since I didn't have any symptoms of an infection or illness, and no symptoms at all other than fatigue, the consensus there at CTCA is that I just needed to sleep more, even much more, than usual, and this may, or may not, be a new normal. All my labs were about where they have been recently, which is good, or good enough, and maybe I'll get a B-12 shot next visit. Except that this will put more, potentially, on the shoulders of The Champ, I can live with this.
I also reported having another one of those incidents where the muscles in my left leg simply gave out, and this time, Christmas Day, I fell to the floor, not being close enough to anything to grab onto something. I'm convinced that this is the spinal stenosis. I have a follow-up appointment coming up with the Ortho Spine Guy (I'll also make a follow-up appointment with the Ortho Hip Guy, once he lands; he's left his old practice and is not scheduled to join his new one until February) at which time I’ll discuss with each of them doing something more than was done before. Otherwise, except for the “short” in my electric system (pinched nerves in the lumbar region) and that pesky cancer thing, I’m in good health for someone my age. For example, this morning at the gym I did 30 minutes on the elliptical machine and the prescribed PT without any problem. The adventure continues.