Weight = 226 lbs.
So, net loss of 6 lbs over about a month. Right where I think I should be. I must say, that though this is a second Monday and we start the slow recovery until the next poisoning, I thought I would have more appetite and food would taste better. Don't get me wrong: it tastes pretty good and I think I am eating normal amounts; it just doesn't have that return-from-starvation feel the end of the first cycle did.
Still dealing with vicious constipation. Prunes clearly aren't sufficient during chemo week. But some otc remedies help and I have been using some the last couple days to get started again. I really don't want my bod to get dependent on those things. If it works as last cycle, it shouldn't be a problem for the next couple weeks, in just a couple more days.
Shaved the remaining facial whiskers yesterday. Probably time for another photo soon. Remaining (marginal) hair on head and elsewhere seems to be holding on. Perhaps, as yet, I haven't been poisoned enough?
My trumpet playing is really not good. It seems to start off well and then, quickly, the chops tighten up. I am lucky to get a half hour, and then only with reduced range. I am trying to go very slowly and stay within what I am given.
Had another one of those REM dreams yesterday that really freaked me out. Clearly this is the Velcade which must cross the blood/brain barrier in some form or other. Also getting a little finger tingling, but not much, really just during sleep. One of Velcade's side effects is peripheral neuropathy, and I don't want to go there.
We have looked after the Doodle of some good friends this weekend. He is a dear dog and we fell immediately back into doing what everyone does for their dogs. But....they are a burden and in my current state--let alone fully healthy at 73 anos--I still don't think I want to go down that trail again. He is here right now insisting on some love, which. of course, he gets. Otherwise, what's life about?
Monday, October 31, 2011
Saturday, October 29, 2011
Velcade Saturdays
Weight: 227 lbs.
Whew. Where have I been? This is one lost day. Got up this morning (5 a.m.!) and ate relatively heartily: couple poached eggs, couple strips organic bacon, a half cinnamon raisin bagel, and some organic strawberries and blueberries. Oh yeah: 3 prunes, bien sur. I ironed a few clothes, read the electronic version of the SLC Trib and was back in bed by 8 a.m.! I was exhausted. Slept another hour and didn't even hear Jan leave to do errands. Then I read and did some crosswords until noon, ate some lunch and went back to bed for another hour and a half. This is eerily similar to what happened at the end of the first chemo week. The Velcade continues to work its destruction for a number of days. I recall during Round 1 not feeling totally back until the following Monday. And, this afternoon, the dreams! I had a long visit with an old, dear Canadian friend whom I haven't seen in 50 years. This is what appears to happen when the prednisone wears off and the Velcade is hanging around. Get used to it sucker!
Whew. Where have I been? This is one lost day. Got up this morning (5 a.m.!) and ate relatively heartily: couple poached eggs, couple strips organic bacon, a half cinnamon raisin bagel, and some organic strawberries and blueberries. Oh yeah: 3 prunes, bien sur. I ironed a few clothes, read the electronic version of the SLC Trib and was back in bed by 8 a.m.! I was exhausted. Slept another hour and didn't even hear Jan leave to do errands. Then I read and did some crosswords until noon, ate some lunch and went back to bed for another hour and a half. This is eerily similar to what happened at the end of the first chemo week. The Velcade continues to work its destruction for a number of days. I recall during Round 1 not feeling totally back until the following Monday. And, this afternoon, the dreams! I had a long visit with an old, dear Canadian friend whom I haven't seen in 50 years. This is what appears to happen when the prednisone wears off and the Velcade is hanging around. Get used to it sucker!
Thursday, October 27, 2011
Round 2 Velcade
This is a much easier day as I reported upon first administration, three weeks ago. A 25-min bag of anti-emetics and a Velcade push and I was only hooked up for about a half hour. Total elapsed time at the Center, just an hour. If I recall from last time, I may be good to go to SP&T tonight and wail a while. The Velcade seems to get me from about now until Sun-Mon. Then, clear sailing.
Crappy sleeping last night, probably the prednisone. The sunshine in the infusion room, plus one of the two, heated recliners put me down pretty fast. Nap time this afternoon, but definitely. Bought a recliner for the bedroom that permits me to watch the telly in a more upright position. Ensuing result after one trial: no headache. But then, I haven't had any for a couple days now. Perhaps the sinuses are adjusting to the naked head and vv.
Back here again if there is anything to report, otherwise silence be golden....
Crappy sleeping last night, probably the prednisone. The sunshine in the infusion room, plus one of the two, heated recliners put me down pretty fast. Nap time this afternoon, but definitely. Bought a recliner for the bedroom that permits me to watch the telly in a more upright position. Ensuing result after one trial: no headache. But then, I haven't had any for a couple days now. Perhaps the sinuses are adjusting to the naked head and vv.
Back here again if there is anything to report, otherwise silence be golden....
Wednesday, October 26, 2011
the slow learner
My topic today is the failure to communicate, or how your body sends you mixed signals. I had a pretty good night last night. Made the Kicks rehearsal and acquitted myself in so-so fashion. Still lacking range and flexibility, but within that am making the changes. Came home wired as usual and read myself to sleep. The steroids had me up whizzing a couple times, but sleep came easily each time after and I got a full night in. Felt hungry for breakfast, some Cream of Wheat, prunes, and then Jan offered to make some French toast with the good, Grand Marnier recipe (you will all want that one). So I did a couple pieces of that with organic butter and organic maple syrup. Backing it all was some Peppermint tea, which made me a little high last week, but not overly so. I took my first three of five prednisones right after finishing this repast. Within 20 minutes I was shaky high, and had raging heartburn. For the latter I popped a couple Rolaids. Instantly, I was nauseous. I quickly popped an anti-emitic and walked it off. Lesson learned: do what the books say--small portions during tx weeks. Lesson learned: the mixed signals when eating--the hangover-like ones are trying to tell you something. Something like, "We can tolerate some of this, but not too much. And wouldn't it have been better to have stopped this before the French toast? We did that yesterday with great success."
Anyway, all is well now: lunch was a toasted slice of organic whole wheat bread with some almond butter on it, and a half banana. You know: just like what normal people eat...
Tuesday, October 25, 2011
Down and down I go, round and round I go...
Crappy night, perhaps the worst yet. Jan and I watched a couple programs collected on the DVR after the World Series game, which meant that we were up until midnight. That didn't bother me as the steroids were still kicking in. But I had a fierce headache by the time that was over that two aspirins didn't touch. With that kind of pain, I was up for good by 4:30 a.m. Not so good.
I believe I have reached a conclusion about the source of the headaches. While they may be exacerbated by sinus-produced neuralgia, that is not the primary source. I now believe they are pressure headaches produced by the leakage of cerebro-spinal fluid into the brain, caused by the chemo. Here is my reasoning and history on this. When I had a hemi-laminectomy on my lower back (L5-S1) done by Corky Terry in the old Logan hospital (I was 41 yrs old), we made the decision to go into surgery based on a cancellation in the OR. That meant that they shot the marker fluid into my spinal canal in the morning, and did surgery that evening. Post-surgery, I had blinding headaches for about a week. Seemingly they would recede on their own--at this late date, I don't recall what meds we might have used, it seemed to me we walked around the block--and then I would sleep the sleep that heals. I figured the headaches were due to the staining of the cord in close proximity to the surgery. Only half correct as it turned out. Bob Stephenson, who did my prostate, 20+ yrs later, told me that the culprit was the bore size of the needle used to pierce the dura of the spinal cord. They now use a much finer bore, et voila, no headaches. I feel that if we had had the usual week between the piercing of my cord and the surgery, the hole would have healed and I wouldn't have had any headaches, either. Post hoc reasoning, yah, yah. Anyway, note the function of the walks during these headaches. They got me upright and probably relieved the cranial pressure.
Anyhow, I have been getting these headaches regularly for some time now, a time that predates my diagnosis (Aug. 25?). How much time before? Not really sure: the better part of 6 months, maybe a year.(An omen?) We would be watching a movie in bed and I would have to get up to relieve the headache pressure. I thought a lot of things: We were too close to the screen; my glasses finally needed to be changed. And, on occasion, taking my glasses off (I am 20-20 in my right eye) seemed to put off the headache somewhat. It was sinus related. It was neck tension. But the most consistent cure was to simply stand up. I would wander about the room until the pain receded, still watching the show, and then lie back down when I felt better. We have a piece of literature on chemo-induced headache that seems to support the pressure theory. For me, lying there and watching a show produces the headache. In the great room, I can sit in my recliner, usually only a little reclined, and the problem essentially doesn't show up. Seems pretty definitive.
Well to finish this diatribe, by 4:30 I was a little queasy. (An aside: when I have used the term, urpy, in prior posts, I meant, and mean, queasy, not upchucky. There has been no upchucky to date.) And my head was really hurting. I held off for an anti-emetic until 6 a.m.--a scant 6 hrs since the prior dose. And saints-be-praised (by someone), I recalled that I had a bottle of Canadian aspirin avec codeine. According to the label I can take up to ten of those a day for 5 days if need be. So I popped one at 7 a.m. and almost instantly the head was gone. But note: I spent the two and a half hours dozing and sleeping in the recliner, therefore, mostly upright during that time. And we know from experience that works. So, if the headaches continue--and I don't really expect that--then they can be controlled. Looks like more recliner time and switching the DVR to the great room.
I have managed to choke down a couple cups of herbal tea and a portion of Cream of Wheat laced with agave syrup this morning. But I essentially have no appetite, and still feel like I am hungover. The three steroidal prednisone pills I have taken so far are doing their usual lift--two more to follow in a couple minutes--and with the exception of the appetite, I think I can get through the day. Kicks rehearsal tonight? We'll see.
I believe I have reached a conclusion about the source of the headaches. While they may be exacerbated by sinus-produced neuralgia, that is not the primary source. I now believe they are pressure headaches produced by the leakage of cerebro-spinal fluid into the brain, caused by the chemo. Here is my reasoning and history on this. When I had a hemi-laminectomy on my lower back (L5-S1) done by Corky Terry in the old Logan hospital (I was 41 yrs old), we made the decision to go into surgery based on a cancellation in the OR. That meant that they shot the marker fluid into my spinal canal in the morning, and did surgery that evening. Post-surgery, I had blinding headaches for about a week. Seemingly they would recede on their own--at this late date, I don't recall what meds we might have used, it seemed to me we walked around the block--and then I would sleep the sleep that heals. I figured the headaches were due to the staining of the cord in close proximity to the surgery. Only half correct as it turned out. Bob Stephenson, who did my prostate, 20+ yrs later, told me that the culprit was the bore size of the needle used to pierce the dura of the spinal cord. They now use a much finer bore, et voila, no headaches. I feel that if we had had the usual week between the piercing of my cord and the surgery, the hole would have healed and I wouldn't have had any headaches, either. Post hoc reasoning, yah, yah. Anyway, note the function of the walks during these headaches. They got me upright and probably relieved the cranial pressure.
Anyhow, I have been getting these headaches regularly for some time now, a time that predates my diagnosis (Aug. 25?). How much time before? Not really sure: the better part of 6 months, maybe a year.(An omen?) We would be watching a movie in bed and I would have to get up to relieve the headache pressure. I thought a lot of things: We were too close to the screen; my glasses finally needed to be changed. And, on occasion, taking my glasses off (I am 20-20 in my right eye) seemed to put off the headache somewhat. It was sinus related. It was neck tension. But the most consistent cure was to simply stand up. I would wander about the room until the pain receded, still watching the show, and then lie back down when I felt better. We have a piece of literature on chemo-induced headache that seems to support the pressure theory. For me, lying there and watching a show produces the headache. In the great room, I can sit in my recliner, usually only a little reclined, and the problem essentially doesn't show up. Seems pretty definitive.
Well to finish this diatribe, by 4:30 I was a little queasy. (An aside: when I have used the term, urpy, in prior posts, I meant, and mean, queasy, not upchucky. There has been no upchucky to date.) And my head was really hurting. I held off for an anti-emetic until 6 a.m.--a scant 6 hrs since the prior dose. And saints-be-praised (by someone), I recalled that I had a bottle of Canadian aspirin avec codeine. According to the label I can take up to ten of those a day for 5 days if need be. So I popped one at 7 a.m. and almost instantly the head was gone. But note: I spent the two and a half hours dozing and sleeping in the recliner, therefore, mostly upright during that time. And we know from experience that works. So, if the headaches continue--and I don't really expect that--then they can be controlled. Looks like more recliner time and switching the DVR to the great room.
I have managed to choke down a couple cups of herbal tea and a portion of Cream of Wheat laced with agave syrup this morning. But I essentially have no appetite, and still feel like I am hungover. The three steroidal prednisone pills I have taken so far are doing their usual lift--two more to follow in a couple minutes--and with the exception of the appetite, I think I can get through the day. Kicks rehearsal tonight? We'll see.
Monday, October 24, 2011
Round 2: Amped!
Wow! Riding the steroid buzz. I can type faster. I could probably hit a curve ball. Scratch that one. Anyway, this day was much like the first one three weeks ago, except that an allergenic reaction was not a part of today. Therefore, everything went marginally faster. I arrived at the clinic about 9:50 a.m., was ushered in about 10:10--there were already people there ahead of me--and prepped. Then we had a nice conversation with AbJ, that was revelatory in a couple ways, about which I will elaborate below. Suffice to say that it still took until 4:20 p.m. to drip and push the R-CHOP and Velcade into my superior vena cava. I slept after they pumped in the benadryl (anti-allergenic) but was up the rest of the time reading from the cancer book and listening to: Jack Sheldon, Diana Krall, Clayton Bros and others on the nano. (Those names are for the wandering hipster who may find this blog, or, indeed may be a close bud.) I lapped everyone in the room except for one guy who showed up as I was leaving. Upshot: I am feeling great, no nausea right now, hungry, and, to reiterate--juiced.
I asked AbJ about CT scans. He was surprised that we hadn't discussed this earlier. He will do CTs and bone marrow after Round 3. I had read that many clinics do this, but hadn't found out what he did. Some clinics, he said, do this after 2 or 4 rounds. They repeat the tests only in the areas where cancer was previously located, ergo another bone marrow--not looking forward to that. At that point it becomes quite interesting. There is a chance--since my treatment is a conservative (!) one for this particular cancer--that what I am going through now will have no effect on the MCL. (Protectively, until now, I haven't even thought that was a possibility.) At that time decisions will be taken about stem-cell transplants, a much more harsh treatment. He likes either Huntsman or LDS (IHC) in SLC for these, saying that LDS is more communicative. (Since he is a graduate resident of Huntsman, he says he can criticize them.) But, bottom line: quality care in both. Second and third outcomes are the same: in one, all evidence of cancer is gone; in the second, it is going but not gone. In either case, the six cycles will be finished as scheduled. Thereafter, there is maintenance, which is tx every week for 4 weeks every 6 months, repeated 4 times, i.e., 2 years. I have forgotten what they will use for maintenance but it will not take much time and will not have any unpleasant side effects. At least that is what I took away from the discussion.
The World Series beckons...probably post tomorrow on changes, if any..
I asked AbJ about CT scans. He was surprised that we hadn't discussed this earlier. He will do CTs and bone marrow after Round 3. I had read that many clinics do this, but hadn't found out what he did. Some clinics, he said, do this after 2 or 4 rounds. They repeat the tests only in the areas where cancer was previously located, ergo another bone marrow--not looking forward to that. At that point it becomes quite interesting. There is a chance--since my treatment is a conservative (!) one for this particular cancer--that what I am going through now will have no effect on the MCL. (Protectively, until now, I haven't even thought that was a possibility.) At that time decisions will be taken about stem-cell transplants, a much more harsh treatment. He likes either Huntsman or LDS (IHC) in SLC for these, saying that LDS is more communicative. (Since he is a graduate resident of Huntsman, he says he can criticize them.) But, bottom line: quality care in both. Second and third outcomes are the same: in one, all evidence of cancer is gone; in the second, it is going but not gone. In either case, the six cycles will be finished as scheduled. Thereafter, there is maintenance, which is tx every week for 4 weeks every 6 months, repeated 4 times, i.e., 2 years. I have forgotten what they will use for maintenance but it will not take much time and will not have any unpleasant side effects. At least that is what I took away from the discussion.
The World Series beckons...probably post tomorrow on changes, if any..
Sunday, October 23, 2011
Round 2 Minus 1
Looks as though I need to eat all I have been eating this past couple weeks. Loss across 20 days is about 5 lbs, about a couple pounds per week. I can live with that. And we don't know if subsequent cycles will produce as much loss as the first one. Another thing to wait and see about.
Today's pic is about a week old and is the result of the shearing we did then. I trimmed the beard down to match. As reported in the last post, hair loss seemed to begin last week and may be continuing. What is noticeable to me is that my beard has not grown this past week. There is no visible loss as such in density, it just isn't growing. For those interested in such things, I don't see hair loss elsewhere at this point. I wonder if there is some sort of evolutionary thing involved in that--hair as protective, etc., etc. I do know that in weight loss one's weight goes off selectively in that the last to go, that is, to be consumed by a starving body, involves the reproductive organs.
Jan and I had a nice little walk around Mack Park in Smithfield yesterday and then drove up Smithfield Canyon for the first time in decades. We were surprised by the new developments there: many more houses, including some unique ones. It was nice to be out in the fresh air. My neuralgia has left and I have no complaints about the perceived state of my health at this point.
There is not much else to report. I don't really dread tomorrow as much as I do its outcomes, and then it isn't really dread. However, I am not looking forward to it because I know I will be leaving the good state of well being I am currently in. Ah, well. It is in a good cause, no?
Wednesday, October 19, 2011
hair today...gone tomorrow...
Well, a moment ago I was perusing the Cancer tome, dressed casually in levis and a dark blue, USU Aggie polo shirt when I glanced down at the shirt. I was reading and enjoying the full sunlight our great room provides at this time of year. It was very good lighting and it seemed to have illuminated a number of silver/white hairs on the shirt about the length of the bristles on a toothbrush. And, for a moment, I vaguely wondered whether my toothbrush was falling apart. But, no. They are obviously mine. And this after one treatment? When Lisa was up this past weekend, we did another (futile?) exercise in my waning control over events. I asked her to put on the #2 guard on the hair trimmer, got naked, and we went out on the back patio, where I was sheared (and photographed by Jan--those babies aren't going anywhere!) like a sheep. Well, not really. We stuck to head only. The result wasn't too bad. Same old dude under there. And it wasn't that big a step having taken some of it off at my last haircut. But this seems a little quick, n'est-ce pas? I had been told by the third treatment. Or was it the third week? The latter computes, but is not what I think I remember. Oh well, once again belaboring the point, academically. (What did you expect?)
You can see that we have learned how to add pix to the blog, This is the pic that is in the Profile section, if any of you looked there. It is a ringer in terms of current time and my condition as it was taken by Jan during our trip in Spring 2007 to Spain. We'll consider it the baseline photo, from which we can look at progress/deterioration/whatever in my physiognomy. And we'll add the two others--half shorn, and pretty full shorn--in forthcoming posts, to be followed by the baldy, which maybe will be faster than I thought.
I seem to have gotten the first of probably many little opportunistic infections that will probably come my way in the next few months. And the "rad do" may be partially responsible. I am very susceptible to facial (and now head) neuralgia produced by wafting winds across my pate. Our open window at night has been followed this past couple of nights by excruciating awakenings in which my sinuses are protesting. A hot shower, a couple aspirin and the day goes by okay, with only the occasional shot of sinus pain. In turn, my CPAP machine which forces air into my lungs at night--another story--may also be contributing. But I am hooked on that thing for sleep. I think maybe the cold sores, and the sinus pains are all of a piece: a good old upper respiratory infection that was lurking and ready to bloom at the merest nod of the immune system.
But this is all very picky stuff. One of the reasons I have been silent of late is that there is really nothing to write about. To me that is incredibly positive. It has been a great week so far. Really, if all six cycles of the chemo have weeks two and three in which I feel like I do this week. I will be a happy camper.
Portion control? We don't need no stinkin' portion control! Cancel everything I wrote in the last post about a nice, controlled weight loss through all of this. My appetite this week will not be denied and I am not denying it. So, no more weight records until the forthcoming infusion on Monday next. At that point we'll see where we are. Until then, this dude is partying on.
Saturday, October 15, 2011
mixed news
Weight yesterday = 224 lb
Weight today = 225 lb
Well, obviously we have turned the corner on the weight loss. I am not surprised, since I am eating large amounts of organic (read: fully--yet naturally--fatted) foods. It is pleasing to note that the bod is back to normal functioning on that score. This next week I will engage in more portion control within the expanded array of foods I am now eating in hopes of preserving some, but not all, of this weight loss. I would like to end up the chemo 10% lower in body weight, i.e., 20+ lbs lighter. That would put me at about 210 lbs where I haven't been for 20 yrs, which is smack in the middle of the charts for people my height (6'5"). My internist, Mike Stones, has said he would not like to see me below this weight. And, if one figures 6 chemo cycles of 3 weeks, then rounds up a couple weeks to 20, a 20-lb weight loss during that time frame is about a pound a week, also smack in the middle of most weight-loss programs.
I have been lower than 210 lbs once in the past 20+ years and that occurred whilst the docs were trying to figure what I had going on in re GERD = gastro-esophageal reflux disease. They found out eventually that I had no motility in my esophagus, that is, the food was not actively pushed down that tube which reflexively opens a valve at its bottom (the lower esophageal sphincter or LES) and pushes the food into the stomach, after which the LES contracts to prevent food and acids from refluxing back into the esophagus. In me, food was simply piling up in the esophagus. With just the slight provocation of a gently rocking boat, I was upchucking (tres unusual pour moi) and the weight was falling off. A soon-to-be-retired upper GI doc at UU diagnosed, achalasia, saying I was less than a handful of such cases that he had seen in his 35 years of practice. Mike Stones says that current thought causally is a South American parasite, and, of course, my achalasia manifested a couple years after we did Peru in 1987. All this is to say that I lost 30+ lbs (to 185) before that was turned around. (The UU doc fixed the problem in 10 min: he inserted a balloon into the esophagus and forced open, permanently, the LES. That fix still holds.) None of my family liked me at 185 and I daresay, I couldn't maintain that weight level now, even if I tried.
The bad and the ugly. I have been cruising along practicing daily, until Thursday when I noticed a cold sore developing on my upper lip, right where my lip locks into my mouthpiece. I tried to play Thursday evening at ST&P's usual jam and was massively unsuccessful. I had a range of about five notes. This may be the first manifestation of contracting a little infection somewhere--my sinuses are also draining--but may be dietary, too. (They seem to occur when my level of fruit intake is too high and right now it is high.) I have had cold sores, some sort of herpes, since I was a kid. They massively interfere with trumpet playing. And they retreat at their own sweet time. So I am totally bummed, that while I feel so good physically, I may not be able to play. In high school I once had to play a complete solo piece in Nogales, Sonora that was broadcast on Mexican radio. I had a huge cold sore. The show went on. It was terrible. In a nation of fantastic trumpet players (think Rafael Mendez), I flubbed my way through whatever it was. I am sure they were not impressed, and I was very embarrassed. I have doubled my lysine intake. But still this morning my upper chops are inflamed. (I have good advice on a prescription med that I may acquire if I can do so without another doc visit.)
It's alimentary my dear Watson. Suffice to say: prunes be good! I guess I shouldn't be surprised at the feedback I received via email about this section of my last post including the bad puns and double entendres. (Actually, I have always enjoyed bad puns.) I think this is because most of the readers of this blog--our dear friends--are as old as we are. I just have to figure out how to get through the next chemo week, wherein food intake will once again be problematic, and the problem of constipation may, once again, occur. In regard to that: I will probably get off all preferred foods by next Friday about 72 hours before that next big infusion to minimize subsequent aversions to the foods I really like, and force liquids during the rest of the time. I also have acquired an OTC veg lax preferred by AbJ should I need it.
I am amazed at some of my compatriots in the infusion room who seem to have Carls Jr burgers delivered which they devour whilst hooked up. I wonder what their next few days feel like.
A little more on cancer history. At the beginning of the last century the medical people became aware of acute lymphoblastic leukemia (ALL), a blood cancer, which was presenting in very young children, and killing them, soon after their conditions were diagnosed. They were looking for substances that would kill leukemia cells and nothing else, since there was no location to do surgery, i.e., the cancer cells were everywhere. At first they settled on vitamin B12. Studies showed that this would buy them mere weeks, but reliably so. They also discovered folate (eventually folic acid) and this, too, would buy them some time. Then someone decided to try substances in combination and this bought the most time of all. However, none of these combinations was curative in the sense of a silver bullet: the cancer usually always showed up again, just after a longer delay (in ALL often measured in weeks). However, this research directly led to the idea, still prevalent today, that combinations of substances are better in this fight than single substances. Ergo, in my tx: 6 substances: R,C,H,O,P and V.
Weight today = 225 lb
Well, obviously we have turned the corner on the weight loss. I am not surprised, since I am eating large amounts of organic (read: fully--yet naturally--fatted) foods. It is pleasing to note that the bod is back to normal functioning on that score. This next week I will engage in more portion control within the expanded array of foods I am now eating in hopes of preserving some, but not all, of this weight loss. I would like to end up the chemo 10% lower in body weight, i.e., 20+ lbs lighter. That would put me at about 210 lbs where I haven't been for 20 yrs, which is smack in the middle of the charts for people my height (6'5"). My internist, Mike Stones, has said he would not like to see me below this weight. And, if one figures 6 chemo cycles of 3 weeks, then rounds up a couple weeks to 20, a 20-lb weight loss during that time frame is about a pound a week, also smack in the middle of most weight-loss programs.
I have been lower than 210 lbs once in the past 20+ years and that occurred whilst the docs were trying to figure what I had going on in re GERD = gastro-esophageal reflux disease. They found out eventually that I had no motility in my esophagus, that is, the food was not actively pushed down that tube which reflexively opens a valve at its bottom (the lower esophageal sphincter or LES) and pushes the food into the stomach, after which the LES contracts to prevent food and acids from refluxing back into the esophagus. In me, food was simply piling up in the esophagus. With just the slight provocation of a gently rocking boat, I was upchucking (tres unusual pour moi) and the weight was falling off. A soon-to-be-retired upper GI doc at UU diagnosed, achalasia, saying I was less than a handful of such cases that he had seen in his 35 years of practice. Mike Stones says that current thought causally is a South American parasite, and, of course, my achalasia manifested a couple years after we did Peru in 1987. All this is to say that I lost 30+ lbs (to 185) before that was turned around. (The UU doc fixed the problem in 10 min: he inserted a balloon into the esophagus and forced open, permanently, the LES. That fix still holds.) None of my family liked me at 185 and I daresay, I couldn't maintain that weight level now, even if I tried.
The bad and the ugly. I have been cruising along practicing daily, until Thursday when I noticed a cold sore developing on my upper lip, right where my lip locks into my mouthpiece. I tried to play Thursday evening at ST&P's usual jam and was massively unsuccessful. I had a range of about five notes. This may be the first manifestation of contracting a little infection somewhere--my sinuses are also draining--but may be dietary, too. (They seem to occur when my level of fruit intake is too high and right now it is high.) I have had cold sores, some sort of herpes, since I was a kid. They massively interfere with trumpet playing. And they retreat at their own sweet time. So I am totally bummed, that while I feel so good physically, I may not be able to play. In high school I once had to play a complete solo piece in Nogales, Sonora that was broadcast on Mexican radio. I had a huge cold sore. The show went on. It was terrible. In a nation of fantastic trumpet players (think Rafael Mendez), I flubbed my way through whatever it was. I am sure they were not impressed, and I was very embarrassed. I have doubled my lysine intake. But still this morning my upper chops are inflamed. (I have good advice on a prescription med that I may acquire if I can do so without another doc visit.)
It's alimentary my dear Watson. Suffice to say: prunes be good! I guess I shouldn't be surprised at the feedback I received via email about this section of my last post including the bad puns and double entendres. (Actually, I have always enjoyed bad puns.) I think this is because most of the readers of this blog--our dear friends--are as old as we are. I just have to figure out how to get through the next chemo week, wherein food intake will once again be problematic, and the problem of constipation may, once again, occur. In regard to that: I will probably get off all preferred foods by next Friday about 72 hours before that next big infusion to minimize subsequent aversions to the foods I really like, and force liquids during the rest of the time. I also have acquired an OTC veg lax preferred by AbJ should I need it.
I am amazed at some of my compatriots in the infusion room who seem to have Carls Jr burgers delivered which they devour whilst hooked up. I wonder what their next few days feel like.
A little more on cancer history. At the beginning of the last century the medical people became aware of acute lymphoblastic leukemia (ALL), a blood cancer, which was presenting in very young children, and killing them, soon after their conditions were diagnosed. They were looking for substances that would kill leukemia cells and nothing else, since there was no location to do surgery, i.e., the cancer cells were everywhere. At first they settled on vitamin B12. Studies showed that this would buy them mere weeks, but reliably so. They also discovered folate (eventually folic acid) and this, too, would buy them some time. Then someone decided to try substances in combination and this bought the most time of all. However, none of these combinations was curative in the sense of a silver bullet: the cancer usually always showed up again, just after a longer delay (in ALL often measured in weeks). However, this research directly led to the idea, still prevalent today, that combinations of substances are better in this fight than single substances. Ergo, in my tx: 6 substances: R,C,H,O,P and V.
Thursday, October 13, 2011
uh oh...
Weight = 224 lbs.
Too much weight loss in too short a period of time! Chemo must be kicking the snot out of my red blood cells. While we can count on some portion of this loss to owe to fluid loss, always present in weight-loss program starts, this still means that I have lost 8 lbs in less than 2 weeks. And that shouldn't be happening because:
Steppin' Out With My Baby. Jan and I went to SLC on Tuesday for the first GAM Foundation jazz concert of the year. We are making these decisions on a daily basis depending on how I feel, and, as reported earlier, except for fatigue, I feel pretty good, right now. Anyway, Lisa and Jan--ever planning ahead, and thinking of me--laid in some provisions at Midvale II (Lisa's/Kay's and our pied a terre ala SLC), so we wouldn't have to do restaurant food and the tiring experiences and off-cancer diet associated with that. So we drove down early afternoon and napped in our own second bed--what a luxury! Then Jan and I had a simple meal of grass fed steak, organic fingerling golden potatoes and some canned corn. I filled up. The smell of cooking meat is so powerful and positive to me right now. The concert was excellent. We had seen the same group--The Jeff Hamilton Trio--in August at the Port Townsend Jazz Festival. Here they did a program that barely overlapped with that in PT but with the same brio they always have. (Their bassist is a UU grad who has made the big time.)
The next morning we shopped Whole Foods for as much organic groceries as we could fit in a big cooler and the back of the RAV. I was tired when we got home, but the MLB ALCS kept me awake. There is still residual guilt over watching sports, or indeed any daytime TV as connoting sloth and time wasting. In the 6+ years of retirement I have had an implicit rule (for myself only) that the TV doesn't go on until 5 pm for news, etc. I have to give myself permission to do that. Fall baseball is an exception. To be able to watch the same teams on a daily basis gives one considerably more familiarity with what is happening and what to expect. However, given my current condition, fuck the rule.
But I digress...The upshot of the last few days and this inordinate detail is that I am back to eating my pre-diagnosis load of foods: healthy (eg granolas/yoghurt/fruit), protein rich (the steak!), carb laden (not so much but, yes, bagels with peanut butter (organic, if you please); nutritious all, including an indulged-in craving yesterday for some herring in cream sauce (come on: it's wild caught, loaded with good omegas and it was, after all, from Whole Foods). In sum, from about Monday on I have been eating really well, ingesting enough calories, that if things were normal, this amount of eating should have halted and reversed the early 4 lb loss initially documented above. Undoubtedly more data points are required and I'll start to gather them. But for now, count me worried.
More on Sociability. Inevitably, when one clicks on the POST icon, one thinks, oh no, I forgot to say X. What I forgot to add to the list of anti-social factors in my preceding post was one of the most important considerations of all: Socializing and the immune system. As soon as I get feedback of low white blood cell counts, I will have to pick and choose when I leave home, another reason against hanging in groups. The jazz concert of Tuesday past is directly contrary to this, but it is early days yet. I get a blood count the day of my next infusion Oct. 24. They use that data to tell whether one can tolerate another blast of poison (red blood cell counts) and to determine how effectively one's body is still fighting (white blood cell counts). They have my attention.
Too much weight loss in too short a period of time! Chemo must be kicking the snot out of my red blood cells. While we can count on some portion of this loss to owe to fluid loss, always present in weight-loss program starts, this still means that I have lost 8 lbs in less than 2 weeks. And that shouldn't be happening because:
Steppin' Out With My Baby. Jan and I went to SLC on Tuesday for the first GAM Foundation jazz concert of the year. We are making these decisions on a daily basis depending on how I feel, and, as reported earlier, except for fatigue, I feel pretty good, right now. Anyway, Lisa and Jan--ever planning ahead, and thinking of me--laid in some provisions at Midvale II (Lisa's/Kay's and our pied a terre ala SLC), so we wouldn't have to do restaurant food and the tiring experiences and off-cancer diet associated with that. So we drove down early afternoon and napped in our own second bed--what a luxury! Then Jan and I had a simple meal of grass fed steak, organic fingerling golden potatoes and some canned corn. I filled up. The smell of cooking meat is so powerful and positive to me right now. The concert was excellent. We had seen the same group--The Jeff Hamilton Trio--in August at the Port Townsend Jazz Festival. Here they did a program that barely overlapped with that in PT but with the same brio they always have. (Their bassist is a UU grad who has made the big time.)
The next morning we shopped Whole Foods for as much organic groceries as we could fit in a big cooler and the back of the RAV. I was tired when we got home, but the MLB ALCS kept me awake. There is still residual guilt over watching sports, or indeed any daytime TV as connoting sloth and time wasting. In the 6+ years of retirement I have had an implicit rule (for myself only) that the TV doesn't go on until 5 pm for news, etc. I have to give myself permission to do that. Fall baseball is an exception. To be able to watch the same teams on a daily basis gives one considerably more familiarity with what is happening and what to expect. However, given my current condition, fuck the rule.
But I digress...The upshot of the last few days and this inordinate detail is that I am back to eating my pre-diagnosis load of foods: healthy (eg granolas/yoghurt/fruit), protein rich (the steak!), carb laden (not so much but, yes, bagels with peanut butter (organic, if you please); nutritious all, including an indulged-in craving yesterday for some herring in cream sauce (come on: it's wild caught, loaded with good omegas and it was, after all, from Whole Foods). In sum, from about Monday on I have been eating really well, ingesting enough calories, that if things were normal, this amount of eating should have halted and reversed the early 4 lb loss initially documented above. Undoubtedly more data points are required and I'll start to gather them. But for now, count me worried.
More on Sociability. Inevitably, when one clicks on the POST icon, one thinks, oh no, I forgot to say X. What I forgot to add to the list of anti-social factors in my preceding post was one of the most important considerations of all: Socializing and the immune system. As soon as I get feedback of low white blood cell counts, I will have to pick and choose when I leave home, another reason against hanging in groups. The jazz concert of Tuesday past is directly contrary to this, but it is early days yet. I get a blood count the day of my next infusion Oct. 24. They use that data to tell whether one can tolerate another blast of poison (red blood cell counts) and to determine how effectively one's body is still fighting (white blood cell counts). They have my attention.
Tuesday, October 11, 2011
whoa..
I can live with this. Sleep has returned, absent the steroid juicing of last week. Jan and I took a nice walk Sunday on the USU campus. The campus is beautiful this time of year, in full leaf and quiet. The latter, as a former faculty person, is disquieting and makes me think that not enough is probably being demanded of the students. Then I recall that in many ways USU is a commuter campus--the kids are often just a few hours drive from mum and dad, and they also are otherwise occupied on Sundays. So we had the walk to ourselves. Belying the recession, there are several large construction projects underway. Sunday was the first day in which I felt like retiring after breakfast for a nap--which I did--and then felt the same way in the late afternoon after our walk. It hasn't happened again, but I suspect will as the chemo cycles mount up.
Looking for energy I have decided that I will get my hour's practicing done in the mornings now. It is too easy to feel like not picking up the horn in the late afternoon. That has worked well so far, but I note that my facial muscles seem to be fatiguing earlier in the practice session. Well, I guess if fatigue is a hallmark of this process, and the facial muscles will not be excluded. Again I need to dip into the Psych books and recall the value of distributed practice. Given a friend's visit yesterday I did just that and it seemed to work out well: practice 30 minutes, put the horn down for 30 minutes, and then practice 30 more minutes.
A principal reason for writing today is a couple occurrences in the realm of perception--the inexactitude of feeling and reporting what your inner responses are. The first happened on the way to our walk on Sunday. I found looking out the car window almost painfully bright, particularly so when looking at the fluffy white cumuli that were present then, but also houses painted white. One of the little chemo-prep books that has been given to us calls this "photophobia" , a term I take exception with. I am not in any sense afraid of bright light and phobia implies a real fear. Did I avoid it? Yes, I turned my head away because it was painful, so that part fits the definition of any phobia, but not the fear component, which as often as not is thought to be irrational (by those who don't have it). Anyway, that is academic nit-picking. Suffice to say the phenomenon appears real. It is as though the chemo sharpens one's senses. I have noticed this also with respect to food. Perhaps because I am eating relatively smaller portions, mostly veg, and not simultaneously imbibing, foods taste much more intense. Again, though, we have the conflation of the chemo drugs, taste aversion recovery and a host of other possible variables.
Because we have come across some anecdotal evidence that green tea with all its supposedly great cancer-fighting, micro-ingredients may counteract the Velcade, Jan is feeding me herbal teas during chemo-admin weeks. The books say lay off the green tea three days before and three days after chemo = a week. So we've been there and done that, though I am decidedly not a fan of herbal teas! Well, yesterday was my first cuppa in a couple weeks. I went for some Earl Grey that we got in Canada at a tea merchant that we order from. In 30 seconds I was flying! I could not believe it. I have never felt that powerful an effect from tea, let alone coffee. Once again, an apparent interaction betwixt my new altered state and other common chemicals. Today, I went for a mild Japanese sencha, and after a couple cups, feel pretty normal. So I don't know whether the effect was specific to the Earl Grey or the first cup back on schedule. Ah, sweet mystery of life.
Things alimentary (or in Dr. Suess's words, Thing 2). I have been debating whether to disclose this, but openness suggests I should and this blog is nothing if not open. Chemo is also associated with bowel upset, either diarrhea or constipation. For me it is the latter. I have never worked this hard in my life, to the point where I am somewhat unnerved by the process. As you know, the strain of evacuation involves the Val Salva manoeuver--pushing down through one's abdomen--which is a great lowerer of blood pressure. This has never bothered me before. After all, some would suggest that trumpet playing involves some continued degree of val salva. This last few days, I have seen the stars of low blood pressure. Am I worried? Hell, yes. My paternal granddad, James Leonard Osborne, had his second and ultimately fatal heart attack in precisely this activity. He was 76 or so. I love prunes and was off them during the chemo week but am now ingesting 4-5 every morning. But when are they goihg to kick in? If not soon, I will seek help from the OTC pharmacoepeia.
A reminder about where we live and why we live here: What more can I say about the solicitousness of our friends and family that I have not already said? They are everything to us. But on the environmental side of things: a wonderful fall rain is pattering on the roof and the clouds are thick and low across the valley. Out the window I see a yearling doe and her mother not a hundred feet away examining our tomato patch. They look to be in wonderful shape. We will see more of them as they vacate the high country. These are treasured moments.
Looking for energy I have decided that I will get my hour's practicing done in the mornings now. It is too easy to feel like not picking up the horn in the late afternoon. That has worked well so far, but I note that my facial muscles seem to be fatiguing earlier in the practice session. Well, I guess if fatigue is a hallmark of this process, and the facial muscles will not be excluded. Again I need to dip into the Psych books and recall the value of distributed practice. Given a friend's visit yesterday I did just that and it seemed to work out well: practice 30 minutes, put the horn down for 30 minutes, and then practice 30 more minutes.
A principal reason for writing today is a couple occurrences in the realm of perception--the inexactitude of feeling and reporting what your inner responses are. The first happened on the way to our walk on Sunday. I found looking out the car window almost painfully bright, particularly so when looking at the fluffy white cumuli that were present then, but also houses painted white. One of the little chemo-prep books that has been given to us calls this "photophobia" , a term I take exception with. I am not in any sense afraid of bright light and phobia implies a real fear. Did I avoid it? Yes, I turned my head away because it was painful, so that part fits the definition of any phobia, but not the fear component, which as often as not is thought to be irrational (by those who don't have it). Anyway, that is academic nit-picking. Suffice to say the phenomenon appears real. It is as though the chemo sharpens one's senses. I have noticed this also with respect to food. Perhaps because I am eating relatively smaller portions, mostly veg, and not simultaneously imbibing, foods taste much more intense. Again, though, we have the conflation of the chemo drugs, taste aversion recovery and a host of other possible variables.
Because we have come across some anecdotal evidence that green tea with all its supposedly great cancer-fighting, micro-ingredients may counteract the Velcade, Jan is feeding me herbal teas during chemo-admin weeks. The books say lay off the green tea three days before and three days after chemo = a week. So we've been there and done that, though I am decidedly not a fan of herbal teas! Well, yesterday was my first cuppa in a couple weeks. I went for some Earl Grey that we got in Canada at a tea merchant that we order from. In 30 seconds I was flying! I could not believe it. I have never felt that powerful an effect from tea, let alone coffee. Once again, an apparent interaction betwixt my new altered state and other common chemicals. Today, I went for a mild Japanese sencha, and after a couple cups, feel pretty normal. So I don't know whether the effect was specific to the Earl Grey or the first cup back on schedule. Ah, sweet mystery of life.
Things alimentary (or in Dr. Suess's words, Thing 2). I have been debating whether to disclose this, but openness suggests I should and this blog is nothing if not open. Chemo is also associated with bowel upset, either diarrhea or constipation. For me it is the latter. I have never worked this hard in my life, to the point where I am somewhat unnerved by the process. As you know, the strain of evacuation involves the Val Salva manoeuver--pushing down through one's abdomen--which is a great lowerer of blood pressure. This has never bothered me before. After all, some would suggest that trumpet playing involves some continued degree of val salva. This last few days, I have seen the stars of low blood pressure. Am I worried? Hell, yes. My paternal granddad, James Leonard Osborne, had his second and ultimately fatal heart attack in precisely this activity. He was 76 or so. I love prunes and was off them during the chemo week but am now ingesting 4-5 every morning. But when are they goihg to kick in? If not soon, I will seek help from the OTC pharmacoepeia.
A reminder about where we live and why we live here: What more can I say about the solicitousness of our friends and family that I have not already said? They are everything to us. But on the environmental side of things: a wonderful fall rain is pattering on the roof and the clouds are thick and low across the valley. Out the window I see a yearling doe and her mother not a hundred feet away examining our tomato patch. They look to be in wonderful shape. We will see more of them as they vacate the high country. These are treasured moments.
Sunday, October 9, 2011
so I lied..
Weight: 229 lbs.
I'm back a day early because I just felt like writing. Reports filtering back to me from our tailgating group and others suggest they like reading what I say. I will have to be careful with this kind of praise. Actually when I weighed yesterday I was a pound lower--such is variability--and 3-4 lb losses across a week are a bit too much in the long run. I have what one of our friends calls "chemo head", a sort of light headedness that is really responsive to food. Problem: what I think may be due to drastically lowered calorie intake, plus fairly radical change in diet is conflated with the drugs they are feeding me. So chemo head is probably a combination of both. This past couple days I have been trying to factor out the food component! I have been starving. Food tastes great and Jan has rescued me with all sorts of healthy stuff. Still after I am sated, I have chemo head, ergo these are the drugs talking.
An aside here on sociability: I have been declining engagements for a number of reasons: 1. I don't feel like engaging in repeated discussions of how I feel; some of it is laziness and fatigue due to the sheer repetition of explaining my condition to everyone I talk to (hence this blog). I probably have always been this way; but my current state seems to exacerbate those feelings. 2. The potential clamor of gatherings--usually so welcome--seems off putting to me at this time; 3. A good part of those gatherings revolves around food and drink, that during this process I must deny myself. If I were there, I would eat and I would drink. Better simply not to be there.
So, while I feel relatively a lot better as Round 1 of the chemo recedes, there are several ways in which I feel not so hot. Perhaps it is early days yet, but AbJ said that I would feel better by this weekend. He did not say I would feel normal. I have this feeling that normal won't be felt for quite some time. The onc RN was right. On Thursday night after SP&T--a good blow--I went right to sleep. Hallelujah. But I was up whizzing in an hour, and then every two hours after that all night. Not so good. Okay, I thought, a little nap Friday and I'll sleep as usual on Friday night. Not really. Then again last night: down a couple hours, up, and repeat. (And this without booze or a prostate!) What I am slowly beginning to realize is that the R-CHOP and the Velcade are continuing their work--hopefully great work!--even though recent administrations are receding. But this appears also to signify that a kind of altered state is likely to be with me throughout this process.
I am reading a fantastic book called The Emperor of All Maladies: A Biography of Cancer (Siddharta Mukherjee, 2010) loaned to me by Bill Jenson that he read during his bouts with kidney and prostate cancer. It is really almost a history of medicine. At this point a couple things from that book are relevant:
1. Cancer is not new; the name is. But there is evidence of it in mummified remains of ancient peoples. So it probably always has been with us.
2. It is prevalent now for a couple reasons: one, we live longer. It is a disease of age at least in part; second, we have cleared the decks for it. In general, many of the bacterial infections that used to kill people early in plagues, pandemics, etc. are gone and our extended lives have left cancer a clear path to become the prevailing disease of our time.
I close with a poem from Steve Heaps, used here without his permission, that he composed to deal with his ongoing battle with prostate cancer:
"Why me?"
"Why not you, asshole?"
I'm back a day early because I just felt like writing. Reports filtering back to me from our tailgating group and others suggest they like reading what I say. I will have to be careful with this kind of praise. Actually when I weighed yesterday I was a pound lower--such is variability--and 3-4 lb losses across a week are a bit too much in the long run. I have what one of our friends calls "chemo head", a sort of light headedness that is really responsive to food. Problem: what I think may be due to drastically lowered calorie intake, plus fairly radical change in diet is conflated with the drugs they are feeding me. So chemo head is probably a combination of both. This past couple days I have been trying to factor out the food component! I have been starving. Food tastes great and Jan has rescued me with all sorts of healthy stuff. Still after I am sated, I have chemo head, ergo these are the drugs talking.
An aside here on sociability: I have been declining engagements for a number of reasons: 1. I don't feel like engaging in repeated discussions of how I feel; some of it is laziness and fatigue due to the sheer repetition of explaining my condition to everyone I talk to (hence this blog). I probably have always been this way; but my current state seems to exacerbate those feelings. 2. The potential clamor of gatherings--usually so welcome--seems off putting to me at this time; 3. A good part of those gatherings revolves around food and drink, that during this process I must deny myself. If I were there, I would eat and I would drink. Better simply not to be there.
So, while I feel relatively a lot better as Round 1 of the chemo recedes, there are several ways in which I feel not so hot. Perhaps it is early days yet, but AbJ said that I would feel better by this weekend. He did not say I would feel normal. I have this feeling that normal won't be felt for quite some time. The onc RN was right. On Thursday night after SP&T--a good blow--I went right to sleep. Hallelujah. But I was up whizzing in an hour, and then every two hours after that all night. Not so good. Okay, I thought, a little nap Friday and I'll sleep as usual on Friday night. Not really. Then again last night: down a couple hours, up, and repeat. (And this without booze or a prostate!) What I am slowly beginning to realize is that the R-CHOP and the Velcade are continuing their work--hopefully great work!--even though recent administrations are receding. But this appears also to signify that a kind of altered state is likely to be with me throughout this process.
I am reading a fantastic book called The Emperor of All Maladies: A Biography of Cancer (Siddharta Mukherjee, 2010) loaned to me by Bill Jenson that he read during his bouts with kidney and prostate cancer. It is really almost a history of medicine. At this point a couple things from that book are relevant:
1. Cancer is not new; the name is. But there is evidence of it in mummified remains of ancient peoples. So it probably always has been with us.
2. It is prevalent now for a couple reasons: one, we live longer. It is a disease of age at least in part; second, we have cleared the decks for it. In general, many of the bacterial infections that used to kill people early in plagues, pandemics, etc. are gone and our extended lives have left cancer a clear path to become the prevailing disease of our time.
I close with a poem from Steve Heaps, used here without his permission, that he composed to deal with his ongoing battle with prostate cancer:
"Why me?"
"Why not you, asshole?"
Thursday, October 6, 2011
and the beat goes on..
Feeling good right now. The Thursday Velcade push is a piece of cake compared to that marathon on Monday. I was asleep when they administered the Velcade on Monday so didn't see that all it involved was an "IV push" (nurse jargon). Since one is already ported and the external tube is fitted each appearance, one is hooked up to the tubes that allow the RNs to drip or push into you what they need to. I found out this morning that the Velcade is in powder form until they dissolve it in saline just prior to the push. So, this morning after cleaning the port with the usual flush, I got a small bag of anti-emetic and steroids and then the Velcade. Actual elapsed time from arrival with vitals check, port connection and flush, sitting around, and infusion about 90 minutes. Mitzi, the RN, who I find recalls me from the Reserve Desk at Merrill-Cazier Library, where she used to work, says I am likely to be awake tonight, so to have something to do. As is it SP&T night I have. Problem: after playing I am usually more wired than before. Probably not good on top of the steroids, but not a problem on Tuesday night when I made the Kicks rehearsal. The Horace Silver charts this time don't look difficult but there are places where they are very tricky. Some home shedding will be required so I have made some copies of things I need to do so that I don't have the music folder at home if I cannot make the rehearsal.
Also, not kidding myself that right now--fairly wired--I am riding the steroid juicing and the anti-emetics. Who knows about tonight. But I am optimistic.
AbJ called last evening. I was surprised and pleased that he followed up my first infusion. His primary concern: vomiting, I suspect because of dehydration. He suggested that by this weekend I would be feeling good again and that that state would increase across the next two weeks. Further, I could expect the same course each infusion cycle. I asked what about across cycles. Answer: Increased tiredness. Expected that but didn't want to particularly hear it. I am already napping about an hour most late afternoons and still sleeping about 7-8 hours. Yet at this point I don't feel any more fatigue than I have for perhaps a year.
A note about taste aversion: 'tis real. In Carl Cheney's words, I am a walking case study. Jan is laboring mightily with broths and all kinds of organic foods. The first day the broth smelled and tasted good. Now I cannot stand the smell of it and can barely drink enough of it to satisfy her. Ditto that first day's tea. I will be nourished!! Peanut butter and brown bread seems to have survived a couple days. And there was a roast organic chicken last eve that right now sounds good for left overs. But mostly, I am full after one slice of bread and a bit of herb tea. The weight taking next Monday should be interesting.
So, on balance, still kicking, and if this is the worst I feel for the next little while I will survive the tx. Probably back at this stand on Monday next to report on--hopefully--feeling a whole lot better. Sure appreciate all the phone calls, emails, and offers of support.
Also, not kidding myself that right now--fairly wired--I am riding the steroid juicing and the anti-emetics. Who knows about tonight. But I am optimistic.
AbJ called last evening. I was surprised and pleased that he followed up my first infusion. His primary concern: vomiting, I suspect because of dehydration. He suggested that by this weekend I would be feeling good again and that that state would increase across the next two weeks. Further, I could expect the same course each infusion cycle. I asked what about across cycles. Answer: Increased tiredness. Expected that but didn't want to particularly hear it. I am already napping about an hour most late afternoons and still sleeping about 7-8 hours. Yet at this point I don't feel any more fatigue than I have for perhaps a year.
A note about taste aversion: 'tis real. In Carl Cheney's words, I am a walking case study. Jan is laboring mightily with broths and all kinds of organic foods. The first day the broth smelled and tasted good. Now I cannot stand the smell of it and can barely drink enough of it to satisfy her. Ditto that first day's tea. I will be nourished!! Peanut butter and brown bread seems to have survived a couple days. And there was a roast organic chicken last eve that right now sounds good for left overs. But mostly, I am full after one slice of bread and a bit of herb tea. The weight taking next Monday should be interesting.
So, on balance, still kicking, and if this is the worst I feel for the next little while I will survive the tx. Probably back at this stand on Monday next to report on--hopefully--feeling a whole lot better. Sure appreciate all the phone calls, emails, and offers of support.
Tuesday, October 4, 2011
reality..
Up and urpy, with a raging sinus headache. The latter probably due to sitting in the cold infusion room under the ac for the entire bloody day--though Lisa reports a cancer survivor friend has similar complaints. I get these neuralgic heads fairly regularly, thanks to my Mother's genes, I believe. Had to arise at 4 a.m. for aspirin and Zofran for the urps. Garth, an infusion buddy, said I wouldn't sleep well last night because of the steroids that are a part of R-CHOP. And it was interesting upon getting home last night that I felt a little high--like I could hit a major league curve ball?--but counteraction was possible with a wee hit on the pipe--about which Garth, a farmer, probably wouldn't understand. Slept like a baby up til 4 and thereafter. Mixed feelings about appetite this morning. Jan, my ever faithful, has hot herbal tea brewed and is working up a smoothie. I think I can get them both down. These feelings have the same ugly dimensions as an almost sick hangover. One is not sure whether eating will help or hurt. One question I have is whether the treatments have a cumulatively negative effect. Perhaps I already know the answer to that and just don't want to hear it.
Rain, glorious rain, is falling. I think it has been at least 60 days since we have seen any, and the trees need a good soaking prior to winter. However, it doesn't last long enough.
Right now, I'd say rehearsal tonight is iffy, but we'll see. Last week was such a blast. Larry's new arrangements are excellent. On some he has written some really close harmonies that sound great. On this concert there is plenty of solo space, and some great changes to play on. I want to be there! Then on Thursday eve, Strum, Plunk, and Toot (SP&T) had a pretty good jam. Chris T's chops are to a place where he is now playing well in tune for the entire session, so the group is starting to sound good in unison. Also, it was an interesting change to have Non-Dancing Eddie McC comping on the keyboard. That fact changed us away from the usual hot-club sound that we have with John N's rhythm guitar. Altogether a very satisfying musical week.
Rain, glorious rain, is falling. I think it has been at least 60 days since we have seen any, and the trees need a good soaking prior to winter. However, it doesn't last long enough.
Right now, I'd say rehearsal tonight is iffy, but we'll see. Last week was such a blast. Larry's new arrangements are excellent. On some he has written some really close harmonies that sound great. On this concert there is plenty of solo space, and some great changes to play on. I want to be there! Then on Thursday eve, Strum, Plunk, and Toot (SP&T) had a pretty good jam. Chris T's chops are to a place where he is now playing well in tune for the entire session, so the group is starting to sound good in unison. Also, it was an interesting change to have Non-Dancing Eddie McC comping on the keyboard. That fact changed us away from the usual hot-club sound that we have with John N's rhythm guitar. Altogether a very satisfying musical week.
Monday, October 3, 2011
Been there....
Long day. Arrived at the Cancer Center (CC) at 10 a.m. Of course, we weren't called until 11. Then it was vital signs, check that the port was open, flush it, and wait for the real nurse to show. So by the time I am hooked up, it is maybe 11:30. First, a blast of benadryl, very soporific, but I wanted to stay around to see what was happening so I fought going to sleep. Then a large bag, first of a total of maybe four, to drip, drip, drip, slowly in. They start very slowly to check for allergic reactions. Usually they occur in the first five minutes or so; mine took about an hour to ramp up, starting with itchy eyes, then itchy throat, then itchy skin. I rode it for awhile before deciding it was probably worsening and gave the signal. The nurse immediately shut off the flow and substituted another bag (antidote?) and in 10 min or so the effects were gone. And they said, it was unlikely they would be repeated. (They were right.)
Jan had prepared food (?) for the day for me: magic mineral broth--a great veg broth; ginger tea; apple sauce; dry cheerios. This is one serious lady. I ate it all over the course of the afternoon and loved all of it. In the meanwhile other patients were having their spouses bring in Carls Jr burgers and all manner of bad shit. They also have some snacks and drinks available but it is all pretty bad (Doritos; Cokes), so I stayed pretty much true to course. All the advice we had gotten was good, especially that of being cold. We were supposed to get to the low 80s today but it was cool in the morning and I bit the bullet and put on levis, shoes and sox. (Shoes and sox feel strange.) I should also have put on a long sleeved shirt! But I had a lovely lap quilt given to me by an Albuquerque church group, a member of which is my good friend, Non Dancing Ed McCullough's piano teacher. That really worked well.
Listening to All Things Considered about 4 p.m. I dropped into the arms of Morpheus and was only awakened by them unhooking me at 5:30. Jan had already been there about 15 min. So we've done one errand on what was a day of running around for her--gettting prescriptions filled, etc, and are back home. (The CC does have WiFi so I may hump this little baby down one of these times.) She is starting dinner prep, so I need to make myself available while I can.
In sum, not too eventful--I know that is subject to change with each passing hour--and the subsequent infusions will be much shorter. So we have started down the chemo road...
Jan had prepared food (?) for the day for me: magic mineral broth--a great veg broth; ginger tea; apple sauce; dry cheerios. This is one serious lady. I ate it all over the course of the afternoon and loved all of it. In the meanwhile other patients were having their spouses bring in Carls Jr burgers and all manner of bad shit. They also have some snacks and drinks available but it is all pretty bad (Doritos; Cokes), so I stayed pretty much true to course. All the advice we had gotten was good, especially that of being cold. We were supposed to get to the low 80s today but it was cool in the morning and I bit the bullet and put on levis, shoes and sox. (Shoes and sox feel strange.) I should also have put on a long sleeved shirt! But I had a lovely lap quilt given to me by an Albuquerque church group, a member of which is my good friend, Non Dancing Ed McCullough's piano teacher. That really worked well.
Listening to All Things Considered about 4 p.m. I dropped into the arms of Morpheus and was only awakened by them unhooking me at 5:30. Jan had already been there about 15 min. So we've done one errand on what was a day of running around for her--gettting prescriptions filled, etc, and are back home. (The CC does have WiFi so I may hump this little baby down one of these times.) She is starting dinner prep, so I need to make myself available while I can.
In sum, not too eventful--I know that is subject to change with each passing hour--and the subsequent infusions will be much shorter. So we have started down the chemo road...
Sunday, October 2, 2011
C Day Minus One...
Weight = 232 lb.
Thought I'd include some vitals as we go along. The foregoing suggests that I have been having an awfully good time this week. Actually, this is my most recent long-term weight at which I have been for a couple years. We'll see how this goes.
Reading quite a lot of anecdotes about taste aversion--those of you reading who are Behavior Analysts can skip this part--a conditioning process in which the body identifies poisons and essentially makes one avert from the taste associated with them. E.g., the classic is the steak bernaise sauce link. If the sauce is bad, one averts specifically to the taste of the sauce, not the surroundings, the plates, or the steak. I had a small case of this during a sea voyage when I was 14. We were on the way to England in 1953 to play concerts for 5 months--a boys' band of 40 individuals. We sailed on the Cunard line from Quebec City, Quebec to Portsmouth England. We caught the tail end of a nor'easter when we got into the North Atlantic. They locked us in for 3 days. The decks were awash. This was a 20,000 ton liner. As there was no air conditioning, the smell of vomit throughout the ship increased each day. I was taking dramamine, but it left me permanently queasy. The stewards served mountains of hard rolls and butter before dinner every night, and, being 14, I ate a lot of them. Thereafter, they were unappealing to me for a considerable time. Anecdotally, there is quite a bit of talk that one shouldn't eat one's preferred foods during chemo for this very reason.
The port placement area--a little lower than I thought--is tender but healing nicely. The surgical pad came off on Thursday and I was able to shower, which was a considerable pleasure as it probably was for those around me. (Just kidding: I bathed the prior 3 days.)
This week we have had good friends visiting from Albuquerque. We are travelling companions with this couple and we all get along well. So there was considerable eating and drinking as there will be today. We belong to a brunch group--4 couples--which meets 4 times a year to pot luck brunch on a Sunday. Usually these are anywhere from 4-7 hour gatherings. We have all joked about producing a cookbook since the food and wine usually work out so well. I probably won't ingest as much wine today as I usually do since I want to be strong for tomorrow.
I also got partially buzzed on Thursday, but my barber couldn't bring herself to whack off the top--already pretty thin. However, it is an approximation, and we'll see what the brunch group thinks. I'll go back in a couple weeks and get it shortened farther. No, I still don't know how to post a pic on this thing, but I may change my profile pic as we go and accomplish the same thing. The current profile pic was taken 4 years ago in Spain.
Inadvertently, I have probably located AbJ's MCL patient who opted for treatment at Huntsman. We'll call her Em as she wishes to remain anonymous. Through an intermediary I have learned that Em has decided to approach her fight by continuing as normal a lifestyle as possible. (I don't as yet know all about what is normal for her.) She takes as many diversionary activities with her as possible to chemo--crossword puzzles, books, music. I like her! I am going to start exactly the same way. It sounds as though she is also on R-CHOP. She has found a couple of potentially important things for me: 1. by contacting the Lymphoma Research Foundation, one can get hooked (?) up with someone who has the same diagnosis. She has had 2 "buddies" in this way who have been helpful to her, as she has to them. 2. She has used mj throughout, not waiting to get nauseous before employing it. Sounds a plan. Others have told me about its effectiveness and its appetite stimulating effects. I will get along with a little help from my friends. 3. She has kept up a physical fitness regimen. I will continue mine and maybe find out more to do, that is specifically helpful. 4. Huntsman also has a program of free acupuncture against pain. Jan is looking around our area here to see what is available. That portion may require a trip to Ogden. (Or, indeed, if health permits, why not an overnight at our townhome in SLC?)
I am apprehensive. I get these same feelings before every concert or live performance. Life as I know it will change tomorrow. How much? We'll see.
Thought I'd include some vitals as we go along. The foregoing suggests that I have been having an awfully good time this week. Actually, this is my most recent long-term weight at which I have been for a couple years. We'll see how this goes.
Reading quite a lot of anecdotes about taste aversion--those of you reading who are Behavior Analysts can skip this part--a conditioning process in which the body identifies poisons and essentially makes one avert from the taste associated with them. E.g., the classic is the steak bernaise sauce link. If the sauce is bad, one averts specifically to the taste of the sauce, not the surroundings, the plates, or the steak. I had a small case of this during a sea voyage when I was 14. We were on the way to England in 1953 to play concerts for 5 months--a boys' band of 40 individuals. We sailed on the Cunard line from Quebec City, Quebec to Portsmouth England. We caught the tail end of a nor'easter when we got into the North Atlantic. They locked us in for 3 days. The decks were awash. This was a 20,000 ton liner. As there was no air conditioning, the smell of vomit throughout the ship increased each day. I was taking dramamine, but it left me permanently queasy. The stewards served mountains of hard rolls and butter before dinner every night, and, being 14, I ate a lot of them. Thereafter, they were unappealing to me for a considerable time. Anecdotally, there is quite a bit of talk that one shouldn't eat one's preferred foods during chemo for this very reason.
The port placement area--a little lower than I thought--is tender but healing nicely. The surgical pad came off on Thursday and I was able to shower, which was a considerable pleasure as it probably was for those around me. (Just kidding: I bathed the prior 3 days.)
This week we have had good friends visiting from Albuquerque. We are travelling companions with this couple and we all get along well. So there was considerable eating and drinking as there will be today. We belong to a brunch group--4 couples--which meets 4 times a year to pot luck brunch on a Sunday. Usually these are anywhere from 4-7 hour gatherings. We have all joked about producing a cookbook since the food and wine usually work out so well. I probably won't ingest as much wine today as I usually do since I want to be strong for tomorrow.
I also got partially buzzed on Thursday, but my barber couldn't bring herself to whack off the top--already pretty thin. However, it is an approximation, and we'll see what the brunch group thinks. I'll go back in a couple weeks and get it shortened farther. No, I still don't know how to post a pic on this thing, but I may change my profile pic as we go and accomplish the same thing. The current profile pic was taken 4 years ago in Spain.
Inadvertently, I have probably located AbJ's MCL patient who opted for treatment at Huntsman. We'll call her Em as she wishes to remain anonymous. Through an intermediary I have learned that Em has decided to approach her fight by continuing as normal a lifestyle as possible. (I don't as yet know all about what is normal for her.) She takes as many diversionary activities with her as possible to chemo--crossword puzzles, books, music. I like her! I am going to start exactly the same way. It sounds as though she is also on R-CHOP. She has found a couple of potentially important things for me: 1. by contacting the Lymphoma Research Foundation, one can get hooked (?) up with someone who has the same diagnosis. She has had 2 "buddies" in this way who have been helpful to her, as she has to them. 2. She has used mj throughout, not waiting to get nauseous before employing it. Sounds a plan. Others have told me about its effectiveness and its appetite stimulating effects. I will get along with a little help from my friends. 3. She has kept up a physical fitness regimen. I will continue mine and maybe find out more to do, that is specifically helpful. 4. Huntsman also has a program of free acupuncture against pain. Jan is looking around our area here to see what is available. That portion may require a trip to Ogden. (Or, indeed, if health permits, why not an overnight at our townhome in SLC?)
I am apprehensive. I get these same feelings before every concert or live performance. Life as I know it will change tomorrow. How much? We'll see.
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