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.