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.