bottom of the fifth

Well, the fifth inning is complete. This morning I recounted that I had very low bp following the last Velcade push, so the RN suggested a larger bag of fluids, contra dehydration which they suspect contributes to low bp during all of this. Yet, they all agree with me when I say the pharmaceutical/medical world still doesn't know dick about most drug interactions. I saw so much of that when consulting for the state. Patients at the Developmental Center were on so many drugs that they regularly had to take drug holidays to get things sorted. We even went through that with my mother-in-law in her last few years. So with the admixture that I am taking, dehydration is likely to be only one of many variables.

I slept again through the drip, drip, drip. By being asleep I didn't have to refuse the jello that someone brought in for all of us. Yech! My least favorite food, particularly right now when nothing seems very appetizing. However, I did have to accept a free ball pen from some man who was handing them out. But all-in-all the second infusion of the week being so much a shorter expenditure of time is tolerable. However, watch out for tomorrow...


Probably should try some lunch, but just can't conjure up anything that appeals right now.

 

day 2

Well, I was right: 4 hours of sleep last night. For supper, Jan had picked up some organic minnestrone (Amy's in the can) from Costco of all places which we are finding is making a great organic push, and which tasted as good as homemade. A little urpy this morning but controllable with a pill. Regular tx week breakfast of Cream of Wheat and a muffin with peanut butter--organic of course. Oh yes, preceded by prunes. However, I napped immediately after breakfast for 2 hours which has helped a lot. Almost ready to face the day.

Godamn the chemo man: Round 5

Are most of you old enough to recall the Steppenwolf tune called The Pusherman? I've borrowed the title for this post from their tune, which I used to love. That was one gritty band.

Sat through the regular 6 hours of infusion today to start Round 5. We were a day late given the celebration of Dec. 26 in the USA as a holiday. The British and their ilk (read: Canucks et al), in more civilized fashion, celebrate Dec. 26 every year. It is called Boxing Day and it is a day of partying and traveling to see, and to celebrate, and to exchange gifts with, those who are good friends, but not necessarily family. Quite a lot of alcohol is imbibed on this day. I will never forget my father inviting in the milkman who proceeded to get quite drunk (in the morning!) before he tottered on down the road after several drinks at our house in Vancouver on a Boxing Day long ago. (He was the same good guy who let me--under his close supervision--drive his Divco Twin truck down our street at the ripe old age of 10. Things were different in those days.)  Anyhow, I have mixed feelings about this round because I have been feeling good--still no stamina--but all systems go for the last week, because of the prior low blood pressure experience in Round 4. So good, in fact, we even stepped out for some Mexican food in SLC (Frieda's Bistro: highly recommended) and the night before Christmas eve to Franck's which we love at that time of the year. (I had a dynamite meatloaf--their signature dish). But this week will be sobering. I am cruising right now from all the chemicals today. The benadryl infusion to begin with (anti-allergenic) puts me right out and I slept for several hours. (That will mean spotty sleep tonight.) They were very busy as they were trying to accommodate the Monday people (me) as well as their regular Tuesday crowd. Therefore, we were asked to show at 8 a.m., which we did. 

Dr. E Tolman had it right. He was the behavioral psychologist, who, blasphemously (according to Skinnerians), emphasized that the effect of reinforcement was on the future in the form of what he called expectations. Here is the classic example: The Russians trained dogs during WWII to disable German tanks. They strapped a magnetic mine to the dog's back and reinforced the dog for getting close enough to the tank to explode the mine. Of course, the dog had to be replaced. Now one can conclude each of two things: 1. the dog ran out to the tank, because, in the past, he was reinforced (given a goodie) for doing so; and 2. the dog expected, given past experience, to be fed--not to be blown up. The same is true for the advent of punishing experiences. After the wonderful Mexican meal at Frieda's on Sunday, I had no appetite for food Sunday night and I had no appetite for food this morning because my bod knows (expects!) clearly what is coming this week. (Some of you under better control than me will be saying: the damn fool shouldn't have had any appetite on Sunday night after cheese enchiladas and several thousand calories (flan!) at lunch that day. To those I say: bugger off, a well known Boxing Day expression.)  On an ordinary day, I would have had that appetite. In fact I noticed a slow down in appetite a few days earlier but ignored it in the holiday spirit. Speaking of which, spirits, that is, I have had none since I started chemo, probably the longest without since I was young (don't go there). My wife and my daughter are sucking up all the great gift wines we have received lately, and I am aggrieved.  I would not even have noticed the onset of early satiety had I been drinking. Probably something to be learned there. But I am looking forward to a taste of wine (and even bourbon) down the road a piece.


So stay tuned here and we'll parse our way through Round 5.

living large(r)

The third week of the cycle is the best, relatively speaking. Fatigue continues to be a problem, and last night I got a hint of a headache. My CPAP humidifier seems to be drying up over night, and that may relate to the head.  I am waiting for the neuropathy to abide completely and worried that it won't. It is certainly better this week than last: much less edema, but still  alot of sensitivity. The worry is that if some persists into the next cycle it will be further amplified and more permanent. With hearing loss as an issue, if one has a temporary threshold shift one is okay so long as the hearing returns to normal before the next shift and it can be repeatedly shifted without permanent damage, i.e., permanent hearing loss. Permanent damage occurs when more hearing shifts occur without a return to normal hearing. That way there is deafness. I don't know that this is a good analogy. But I would be relieved if the neuropathy was gone before next week.

So I have a week to play in. Ate out in an actual restaurant for lunch today and it was great. And there is dinner out with friends tonight. I will be exhausted but happy.

little (?) indignities

1. This morning my feet are swollen. Lots of edema. They even feel fat. Was I on them too much yesterday? Obviously, we see here evidence that the poisons continue their work, though we are getting farther in time from the last tx.

2. Fell up the stairs at Lisa's, no matter being as careful as I could be. Much better than falling down the stairs, thank-you-very-much. But, nevertheless, I feel like a clumsy bastard. In saving myself, my jersey-covered arm sought the nearest newel post, raked by it and I hit my shoulder on it. Result: Just sore, I thought.  Yet, a couple minutes later, I could feel wetness under my shirt and, upon checking, found that I had scraped the skin from my forearm which was bleeding into my shirtsleeve. The next day my trapezius (shoulder?) muscle was and is black-and-blue, and I have a mysterious blood blister on my other arm, too. Where it came from I have no idea. I wonder how soon (if?) they will go away.

3. I am having to be seriously careful this week with hot and cold. The membranes of my body are very sensitive and I am surprised this condition is hanging on so long.

4. I am quick to erupt, my family points out to me. In typical manic fashion I deny it and say it is they who are over reacting. Uh oh.

The chemo-enhanced life goes on.

on the up and up

Well, everything has improved as it usually does, the farther I get from a tx week. I am still experiencing occasional low bp effects--mostly orthostatic--but nothing like this past Friday. We are in SLC visiting our daughter for a couple weeks, returning to Trash Valley (in re trash: check the air quality in N Utah) probably circa Xmas day. My next and fifth tx starts Dec 27 which means, I think, bon appetit, for the pleasures of the holidays before once again travelling down the old river Styx.

Our thoughts are with dear friends who as I type, in the first case are respectively recovering from an arterial stent placement, apparently in the very nick of time, and in the second case undergoing extensive spinal reconstructive surgery. God, we are all so old...

clapped-out Friday

Blindsided. Did the usual Thursday tx and mostly chilled, expecting to start recovering Friday after the last of the prednisone regimen. Wrong. Really had a good Thursday night's sleep, 7 hours or so, and got up early yesterday to cover the email, read the electronic SLC Tribune and then have some breakfast. Lulled! When I arose from this chair I was woozy, a momentary low bp from sitting around and then arising. I staggered to breakfast and completed that, but every time I stood up I was in danger of passing out. I thought a little lie-down would care for it, but each time I got up throughout the morning I had recurrent episodes. We started some bp tests with a good home machine. Recall 120 (systolic) over 80 (diastolic) is considered normal. Quite a number of my systolics were in the 60s and quite a number of my diastolics were in the 50s. We called the docs and, of course, got their nurses. But they were very helpful. AbJ's nurse suspected dehydration and asked about vomiting (negatory, but some nausea). She said force fluids; that was what the ER would do. We discussed my bp meds, particularly lisonopril, which I had taken earlier--along with a boatload of other meds and supps. She said discuss with my primary maybe dc'ing the lisonopril for for awhile. We did. Upshot: woozy all day. Virtually slept all day except for breaks to eat or a brief visit, then slept all night. Actually spent almost 31 hours in bed counting the 7 hours on Thursday night. Amazing. Anyway, bp last night at 6 was 105/50 and this morning is 100/66. Not going to die with these figures, but I am still light headed and will head back to the rack to get rid of more fatigue. The lisonopril has been dc'd.

I probably ignored fatigue signals this week. I have been reading several compelling (to me) novels that were hard to put down and they make my adrenalin flow. This could all be a big come down from that. Or it could be the accumulation of tx effects via 4 cycles of chemo. Or it could be interactions among the many meds I am taking and the chemo. I vote for all of them. I commend to my psych colleagues out there a fine article on the placebo effect in the newest New Yorker in re belief and expectation. I am ready to believe more of what they are finding now myself.I am sure there are head effects in all of this, too.

Anyway, this process continues to surprise me in ugly ways. Now to bed again.

fragility

Funny how the good news mixed with the general crappiness of treatment weeks seems to be making me emotionally more fragile than usual. What is it with that? In some ways I almost feel like quitting the txs because--by damn--I am healthy again! If I'm healthy, then why must I (be made to) feel crappy? Perhaps it's the relief? I dunno. I don't really feel any relief. At this point I would like to reclaim my life outside the home, get back in shape, eat out, all of that fine stuff. But I cannot. Rationally, that is. All this is pretty maudlin. Everyone is completely supportive, I can use no more help, it surely isn't that. Must be me, just processing.

In any case, Round 4 was completed this morning in record time (oops, No. Five prednisones tomorrow a.m). Now I get to be fully involved in Xmas eating, etc. as the next tx isn't until two days after. Food is still a mixed blessing during tx weeks. Jan fixed me a lovely open-faced, melted-cheese and ham, half-sandwich, with what must be the last of our ever-ripening tomatoes (picked green) and it tasted reasonably good on the approach. And it is not sitting badly. It had the wonderful side-effect of stimulating the alimentary canal. Thank god for that.

So we progress and we process.

how to make a shitty day, less shitty

Accessed my health records this morning and lo-and-behold there was the path. report on my bone marrow. I actually got a little emotional when I shared this with Jan. Things are cool!  No evidence of lymphoma in the marrow. They did find one cluster of stuff that upon closer scrutiny they decided is normal and benign. Since I have been up with a headache from about 3 a.m. (more aspirin and codeine), followed later by an anti-emetic, this is marvelous news. I read awhile in the living room and finally choked down some gruel (viz: Cream of Wheat) and feel a little better. Such is life during tx weeks. Slept a bit more in my reading chair and am somewhat ready to face the day. This ain't much because in the (chosen) life of the shut-in (during tx weeks), there is not all that much to face. 

7 degrees F here this morning, not to exceed freezing this afternoon, in spite of full sunshine.. No snow predicted for a week, so instead we will get our winter inversion.

Round 4: Same-o

Another long Monday, but I had a good novel with me, and the initial bag always puts me out, so I napped as well. There was a bran muffin for lunch and it didn't sit all that well. That's what this week will be like: some appetite, but satisfying it will be sickening. On the bright side, I am two-thirds done.

More when I get the assay results.

been there, done it again..

Is the second bone marrow sample easier than that first? Maybe. At least, one knows what to expect. I did find out that if I wanted some valium to cruise through it, I could have had some. Silly me. Anyway, AbJ took a bit more time today. He went away and let the lidocaine do its numbing and the drilling was less painful. The sample withdrawal was a surprise per usual and made me gasp, but hey, it was quick. Probably not going to get the results by Monday when the next round starts, but AbJ said he would be surprised if the sample is not clean of Mantle cells. I like that talk. The nurses thought it was pretty funny when I said that I was there today to be "screwed". And, screwed I was. I did find out that if we proceed through the 6 cycles and go on 6-mo. maintenance that CT scans will be the norm and further bone marrow tests will only occur if the CT scans show something untoward.

No head today. It's almost like it just flew away. I pre-medicated--the aspirin with the codeine-- against a middle-of-the-night pain awakening last night and had a good night. We'll see about tonight. AbJ and I agreed these heads are specific to the chemo, so we won't do any head shot scans.

More, obviously, when we get the official results of the bone marrow assay. I did find out that that assay is done by machine and then recounted by a human. They sample 400 cells. That means on my initial bone marrow they found about 20 Mantle cells (circa 5%) in that sample. I was trying to ferret out what it might mean to have more than zero but less than 5% in the next sample. AbJ will have none of that. He says it will be zero. Sounds as if, should it not be zero, tx this far will counted as a failure.

Ta Da....

Interesting day. Had to fast for the CT scans and awoke before the barium shake at 5 a.m. with a raging head. Didn't take any pain meds as I thought it might compromise the procedure. Negatory, as I found out at the start of the scan. The group doing the scans appears to be a subcontractor at the hospital and they make one fill out the exact same paperwork that one filled out a few weeks before. Clearly inefficient. And with my head--almost intolerable. Did I have a religious preference? No. I say, I told you that nothing had changed: no preference then, no preference now.  Was my address the same? Everything was the same, I said.  I suppose the worker bees are allowed no deviation from script. I guess if this outfit were more efficient these people wouldn't have jobs, and the procedures are unlikely to be their faults anyway. (Tell that to my headache.) On the plus side, their tech guys are very good. I got a call from one of them saying that my upper abdominal/chest scan was fuzzy and would I come back? So, back I went at 3 p.m. thinking that this would compromise the radiologist's reading of my charts. I recalled that in the morning, I didn't hear a second set of instructions from the programmed voice while in the donut. That seemed strange to me. I think I fell asleep and missed the second set of instructions! They assured me that the scans would get read today and by 4 p.m. AbJ called. From his preliminary look--sans radiologist--there is no sign of the original intestinal mass. This is very good news. We'll cut back on the celebrating until after we see that the bone marrow is also no longer compromised. But for now: hip, hip, hoorah! We are scheduled for bone marrow sampling tomorrow at 11:30 a.m. And, of course, all of this is tempered by the fact that it is business as usual Monday with Round 4.

Half way..to where?

Met today with AbJ--found out his derivation is Persian. Told him how we used to have plenty Persians on campus many years ago. He has heard it from my colleagues, those unfortunate enough to have preceded me. Long and short of it: I am half way through the six cycles of chemo; time to take some measures. I drink the barium milkshakes tonight, and in the morning, for an 8 a.m. appointment with the CT scanner at the hospital. He hopes to have the results back by late afternoon and then schedule a bone marrow on Friday. I am a little unclear. It seems he doesn't want to schedule the bone marrow until he can review the results of the CTs. I think he doesn't want to do that more intrusive procedure unless he sees evidence of resolution in the CT scans. Then we look farther to see if the bone marrow is clean, too. But it was not said that we wouldn't do bone marrow, it there is no resolution in the intestinal mass. (Maybe no one wants to go there.)

Some positive news: the other person (guy) in his practice who has Mantle Cell Lymphoma (MCL) is apparently only some days ahead of me in the process. He is getting R-CHOP without the Velcade. And: tada! He has shown complete resolution after three cycles. That is really nice to hear because it makes my procedure seem a little less experimental. I joked about me-Velcade and him-not, and AbJ said we could leave the Velcade out if I wanted to. Personally, I feel the Velcade is responsible for my neuropathy, but AbJ says either one or both can produce this side effect. I am loathe to change in midstream, particularly since the Cornell people added the Velcade to the mix to get better results than R-CHOP alone. Notably the other guy's disease was further along than mine when he presented to AbJ.

If we cannot schedule bone marrow on Friday, then it will be Monday before my next infusion. What a day that would be. Hopefully, we can get the job done Friday. Round 4 will begin Monday next, no matter. If my condition is resolved, we go ahead with three insurance cycles. If I show no improvement--well--I don't want to think about it. But since we are all such individuals when it comes to outcomes, I must not rule that possibility out.

happy, happy

We are very fortunate to have each other and our family all together today to give thanks for being. Lisa and Kay have joined us. Danny Cornell is on his way from Signal Mountain, WY and the turk is coming to room temp. Like most of you we will stuff ourselves and enjoy the togetherness. We are very thankful for all of you who are there for us. What could be better?

we continue

Well, it turns out that we got one pretty big storm for this time of year. Eventual totals near a foot being reported nearby. We could see maybe 10" on our indicators (benches, barbecues). It cleaned up next day just fine with the petroleum tools (blade; blower). I participated since I could spend my time in the truck driving. Hardest part was clearing the snow from the truck, since it sits in the shade on the north side of our house.

Things have played out much as expected. My appetite has improved steadily since the Velcade push last Thursday and the prednisone Friday. I got the usual freaky dreams--the elves last night telling me that they were still at work and I wasn't done yet, tingling in fingers, toes, lips, and foot soles, exhaustion, constipation, and on. But I was well enough by Sunday to consider a journey to SLC to see the NY Voices in concert Monday eve. Kicked back at Midvale II all day Monday, then made the show. Friends of jazz there were pleased to see me, baldness and all. Shortly after we went to Walgreen's upon the return to Cache Valley to start drastic anti-constipation measures, it all worked out! I just knew if I took that step, it would be unnecessary. Very relieved. (Don't mean all these punners, but there they are.)

Lisa and Kay drive up tomorrow for the holiday. I see AbJ one week from tomorrow for a consult. Hope you all out there have a grand, stress-free Turkey Day.

white and whiter

Supposed to snow tonight: Surprise! Been snowing all morning. Not much accumulation yet and the streets are staying wet, so maybe no shoveling/blading this trip out.  Got the flatbed into 4-wheel, low-range yesterday so am pretty much ready when the first big one gets here. We got the 1" minus gravel for ballast a couple weeks back. A few prognosticators think this storm may be a big one. We'll see. Most of the rest of the ski resorts are opening today.

Finished Round 3's treatments yesterday with the Velcade and today with the last 5 prednisone tabs of this round. Slept okay last night but only because I seem to be going over the solos that I would have played in Dec in my head all night. Usually when I ruminate to that extent, that is, my usual relaxation stuff isn't working, I just get up. But 1:15 a.m.? I kept at it. Still have to remember the Velcade will hang several more days, but the prednisone should be done tomorrow and hopefully food will taste better and I'll feel like eating more, not that I'm not right now just with mixed feelings about it.

and more

Almost getting to be routine in this third cycle. Headaches have disappeared at least for now even with trumpet practice yesterday. No pills necessary last night, and a reasonably good sleep of 7 hrs. Still a tad mixed on the feelings of hunger combined with urpiness. Did pop an anti-emetic this morning as preventative since I have found that it is better to stay ahead of that than to try to play catch up. Diet much closer to normal this early in the cycle. Light headed per usual after all the prednisone.

same old, same old..

Round 3 and things are pretty much as before. Short, but productive sleep last night (5 hrs), no real headache (pre-dosed with the aspirin and codeine), the usual faint tx-week urpiness this morning (dosed with one anti-emetic), but a more than usual, day-after breakfast of prunes, cream of wheat and a muffin slathered with peanut butter--organic of course.  Three of the 5 prednisones down, plus my usual meds and otc's. We'll see what that biological soup does.

AbJ's nurses (and, I assume, him: no face time yesterday) are on board with pain killers for the headaches, which they say are quite common. LorTab (oxcycodone or hydrocodone, I can't recall which, since one is Percocet) is on the horizon. I probably won't ingest any until the Canadjun pills don't work. 

The pic (thanks to Lisa) is from Nov. 6 which makes it about a week old. Still retaining eyebrows, a wimpy 'stache and chin fuzz and that is sort of the overall description, too. I expect this third round will take care of these hangers-on.

there's more?

Weight = 231 lbs 

Looks as though all that good, organic food is paying off. I can now actually feel when I have had enough to eat and my hunger is not as sharp between and approaching meals as before. So, I am back near my original set point of 232 lbs.

The reason for posting prior to infusion is to say that I had another crappy night. This is another one of those deals where one is lulled into thinking things are under control, when they are not. I had a couple headache-free nights during the latter part of last week using the aspirin/codeine and heating pad regimen, to the point where, for a couple nights, I didn't use any pills. Last night started off the same way, but again, in about 3 hrs I was hurting. Aspirin etc at that point required about an hour to get back to bed, and then I did so without the CPAP machine, and the sleep just simply wasn't any good without it.  What to do?

headaches redux

The damn things won't go away! I didn't sleep well in SLC really on any given night. Usually middle of the night I was up treating myself to the steam of a hot cup of tea. Forget the Aleves, they didn't work the second night I tried them. Since we returned home on Thursday, I have dipped more regularly into the aspirin with the codeine to some benefit--like a full night's sleep. Also, using a heating pad and sleeping with either side of my head on it. That seems to help. My regular doc--Mike Stones (MS)--is concerned. We did the annual physical on Friday, the upshot of which was that he wants to see me more frequently to keep up with what is happening to me! As if I weren't involved enough in the system already. Anyway I am to discuss the headaches with AbJ tomorrow pre-infusion. MS wants an MRI done of the old bean but says that AbJ may have a particular twist on it. I did manage to talk the regular people out of an unnecessary stick for blood work. AbJ's people will do that through the port tomorrow. Drawback: I have to arrive at infusion with 8 hrs of fasting. Probably not good according to the literature. Apparently, there is a separate certification for dealing with the port that MS's people don't have. Probably more of the same whining after Round 3 starts tomorrow.

still unclear on the concept

Lisa sailed through her hysterectomy with flying colors. She is resting in her bedroom behind me, having come home from the hospital in just over 24 hrs. Amazing! Yesterday was quite busy. The surgeons called her in earlier than planned. She arrived at St. Marks about 11:30 a.m. and was on the table by 12:20, finished by about 2 p.m. and in her room by 4 pm. Palpable efficiency, all the way from being able to track her on an electronic bed board (surgery start time; start time in recovery room, etc.) to going to a conference room to meet with her surgeon when the deed was done. It was nothing short of impressive. But it also meant that I was out and about more than usual, with the waiting room time, and then a visit in the evening. And, it was a cold day, temps in the low 40s with a cutting wind. I stayed well toqued and wrapped up but last night I was up by 2:30 a.m. with more head-splitting neuralgia. Tylenol will simply not touch this stuff and, of course, the Canadian aspirins with codeine are in Logan! I tried hot tea and just being up and was able to get some control after an hour. This morning 2 Aleves seemed to care for the problem. I will rely on them from now on. The result is that this has been a lost day. I slept after breakfast for most of the morning and again this afternoon. Finally feeling up to scratch now.

Lessons learned? I guess this winter weather means I am going to be a home boy. I cannot tolerate the cold air on my skin. Moreover, there is no time off from the chemo. The effects are with me throughout the non tx weeks. My skin is so sensitive, I cannot take out the tea caddy from the cup without burning my fingers. It is the same for my lips and, I am sure, this sensitivity is responsible for compromising my playing ability. It is also the same for all mucosal membranes on my body (use your imagination). So, it is probably true also for my sinuses which are blasted with air each time I sleep with the CPAP machine. 

But on the great side: we brought in Thai the other night from Cafe Trang. (Who knew the Vietnamese could do Thai?) The curry was superb. And, yes, I am now a wimp when it comes to spicy. So I have 5 more days of good appetite and living before the 3rd fall.

Pow! Right in the Kisser.

All-in-all, this has been a nice week. Several friends have made their respective ways out to the house for lunch--bringing the foodstuffs with them--or for coffee. And the weather has been superb for so late in the fall. Bodily functions have again normalized and the sleeping has been good. But, all good things come to an end. Yesterday's warm, south winds presaged--as they usually do--a snowstorm, and it is all white out our windows for the first time this fall. We will have to get used to it. The skiers will be happy to have all the resorts functional by Thanksgiving and the state gives thanks, too, for the tax revenue. The farmers, who, by now, have all seeded their winter crops, will stop complaining, at least for a while.

I have been trying to figure ways to continue playing my horn at a decent level. I was not ready to play on Thursday with SP&T and we mutually called off our little jam. Yesterday, in the warm sunshine of our great room, I thought I'd experiment with rehabbing for my chops. So, I warmed up very slowly, a lot of time between exercises, and stayed mostly with long tones in the staff--I have almost zero flexibility to move up and down the scales very fast--and found to good effect that I could continue to play quite a long time. So I did. Maybe an hour total.

This morning when I awoke about 5:30 a.m. I thought someone had been smashing my face all night with a ball peen hammer. All my sinuses ached and my head was fuzzy. The insides of my lips were raw. Some hot tea, aspirin, and breakfast helped, but  I went back to bed for a further hour's sleep. It looks as though there is no winning with this. But, by damn, I am going to persevere. 

We are on the way to SLC this afternoon for 5-6 days to help Lisa recover from some surgery scheduled for Monday. There are computers there and I will be able to be in communication through the week.

De Nile. It Ain't Just a River.

Jan and I mounted the blade on the plow truck on Tuesday preparatory to snows that will inevitably blanket our hillside this winter. It felt good to be out a while, doing something constructive. I even made Kicks rehearsal that evening. But there is payback. Wednesday and again this morning my fingers feel like sausages--unwieldy and fat. Moreover, after a decent rehearsal Tues evening, when I tried to play yesterday it was awful. I maybe accomplished 20-30 min before my chops froze up, and that was with a very restricted range. Add to these occurrences that I have increased tingling in my hands and feet. I fear that these are the beginnings of some peripheral neuropathy. At least one of the poisons--the Velcade--has this as a side effect. Essentially, along with the other stuff that it does, it also destroys nerve endings. I have dealt with neuropathy in a limited way ever since I had back surgery 30+ years ago. One unintended consequence of that surgery was the loss of feeling in several of the toes of my left foot, and a reduced left ankle reflex. As a result, when tired, I tend to limp on that side and scuff the left shoe. (I can see this when walking in snow in the winter: my tracks show a little drag of the left heel before the shoe imprints in the snow. This knowledge gained from dragging the garbage can down the hill in winter and then seeing my tracks on the way back up the hill. I also wear out the left heels of my shoes faster than the right ones.) Clearly, some neuropathy can be permanent, as this has been with me since then. And, perhaps also interesting, my left foot is where I am feeling the most change in current sensation. So, I hope this is not going to worsen a great deal (denial!), but since I have had only two of six treatments, probably should expect that it will.  However, my reading suggests the return of some, if not all, peripheral sensation in the months post-chemo (denial!). I will have to hold to that thought (denial!). It is very depressing to imagine that I may be finished playing my instrument at the level at which I have been this past year. I really cannot go there yet (absolute denial!). 

Additionally, since I am now seeing these effects well into the second week of the 21-day chemo cycle, I am going to have to revise my expectations on what I can expect during the time away from chemo. All-in-all, this is not happy making.

on and on it goes

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?

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!

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....

the slow learner

The most recent pic, taken last Sunday. Still showing some hair! Less so today. 

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...

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.

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..

Round 2 Minus 1

Weight = 227 lbs.

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?

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.

 

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.

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.

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.

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?"

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.

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.

 

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... 

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.

...well, that was easy...

Okay, I probably feel a little whiffy--but in a good way (2 cups of tea). They made me walk to my surgery this a.m. and left me awake while they prepped. When I inquired about the anesthesia being similar to that used during my colonoscopy, the anesthetist quipped that he had much better drugs than the colon people do. I was awake when they ran their checklist (see A. Gawande: The Checklist Manifesto) then bye-bye. They awakened me during their clean up and back in recovery I was surprised to see that I had probably been out for only 30-40 minutes. No residual discomfort as yet but there is hydrocodone awaiting that eventuality. I was ravenous upon arriving home and made myself my usual french omelette with cheese, a fresh garden tomato and NM green chilies, accompanied by an Einstein's Everything bagel and a couple kinds of fruit.. It don't get no better. I report this detail, because it will probably be an interesting contrast with my forthcoming interest/disinterest in food after a few chemo sessions. A little r&r today, else what's retirement for?

And the Side Effects Are...?

I get a good meal tonight and can drink fluids until midnight, then nothing before surgery. I mentioned my achalasia to the admitting RN at the pre-consult--not wanting to be without fluids for 18 or 20 hours if they scheduled me late in the day, tomorrow. She asked for an early time, et voila, I have to be at the Surgery Center at 6:30 a.m. I think blast off is 7:15 a.m. but there can be delays for emergencies and things, so they say to come prepared. Boy, am I prepared. My wife and daughter laid an IPOD Nano (8 gbs) on me for my bd and Lisa  recorded a bunch of my CDs. While she claims that she went randomly, everything I see on there is worth revisiting. Then my sis-in-law gets me a pair of Skull Candy phones. (This is a Utah Co. gone big in earphones.) Those, a New Yorker and a good novel (see Wolf Hall by Hilary Mantel Winner of the Mann-Booker prize--the life of Thos Cromwell) and I can be there forever.

Tomorrow we are one week from Chemo....Time to elaborate a bit on effects and side effects.

1. Allopecia - a definite effect. I will lose all my hair. Going to take the bull by the horns here and next Thursday get buzzed--but not shaved--to approximate the final condition. Everyone says hair loss will start by the second cycle. This gives me a slight bit of additional control. I will lose my hair my own way! (Yes, on this very site, there will eventually be pix.)

2. Survivors have told me there can be mouth sores. Maybe changes in toothpaste are in store.

3. Tiredness - a definite effect. Maybe a pipe dream, but I am going to see if I can continue walking daily (?). Supposedly better outcomes if one stays in some sort of physical condition.
And, I'm also thinking about getting back to the dumbbells to see if it is possible to at least maintain some muscle tone. However, at this point I have no clue whether this can happen.

4. Nausea - quite a few friends, nameless of course, have suggested one search a source for some medical mary jane. From what can be gathered it is a very successful way to stimulate appetite (oh yeah!) as well as prevent nausea. The THC pills are apparently no where near as effective as a toke. (Jan read that cancer patients often die from malnutrition!)


In the article on R-CHOP with Velcade (note this is the correct spelling), the abstract says that they were able to manage "toxicity" and they note several potential side effects of this drug (another source is VELCADE: Questions to ask your doctor):


5. Neutropenia - low levels of a particular type white blood cell (infection fighters)--raised chance of infection; but also leukopenia (lower white blood cells in general)
6. Thrombocytopenia - low levels of platelets (blood clotters)--a chance of bleeding internally
7. Neuropathy - loss of feeling in the extremities (peripheral neuropathy)
8  Gastrointestinal problems - nausea, vomiting, diarrhea, constipation (oh shit)
9. Low blood pressure - since I am on a half a lisonopril daily for high blood pressure, I'd better ask about that. Interaction possibilities.
10. Heart problems - the stuff can worsen arythmias
11. Lung disorders - some have been fatal; report any shortness of breath (just typing this makes me short of breath).
12. Neuralgia - nerve pain
13. Pyrexia - high temperatures


OMG! as the Tweeters say. We are in for a long ride. More after surgery when I am capable.