headache redux

Well, even with two naps yesterday by half-time of the Jazz game (they were down a bunch) I was exhausted, so I thought at 8:30 p.m. why fight it? Slept 'til 1:30 a.m., whizzed, slept 'til 4:30 a.m. By my count that is 8 good ones, though I am still tired this morning. However, I remark that above, because it is. Remarkable. First good night in awhile, but indicative of the fact that there is much sleeping to be done 'twixt now and full recovery. Also, the whiz data are not thrown in carelessly. The chemo has had me up every two to three hours nightly, so last night is much more like old times (i.e., since prostatectomy now 9 yrs ago).  Perhaps I have excreted most of the chemo poisons by now? 

Mixed results on the headaches. Needed two aspirin upon arising, but obviously the amount of pain was less because my sleep was, with the singular exception, uninterrupted. I don't want to take a lesson from the absence of the workout and the practicing. But, I suppose I must. Right now I still have enough neuropathy, that a simple 4-5 heel raises one day produces more edema and very sore shin muscles the next. The same is true for the embouchere.  Fuck it. If I feel like practicing and working out, I am going to. Soon all that other crap will vanish.

Oh yeah: The Jazz won by 3, per usual, through the other team's last second miss.

hallelujah, hallelujah, halle...lu...jah

To my lay eyes the scan reports are positive in re my cancer. Lymph nodes pretty much unremarkable, original ileocecal mass not evident. But, of course, one has coronary artery disease. Does one love butter? Of course one does! Back to the red wine soon!

I got very little sleep last night again due to sinus headache. Even a hydrocodone took some time to work and I cannot go back to the CPAP machine at that point because it exacerbates the condition. Testing today to see whether it has been my stretching or my practicing or both that lead to these headaches. Doing so by doing neither.  We'll see about that later tonight. Retirement means being able to take a couple naps during the day as needed, so I don't feel bad right now.

We are about 48 hours from getting on the road to the Valley of the Sun for several weeks. I still have considerable neuropathy everywhere but it is receding by the day. Today I drove myself to the scans, got some new slicks for my 4Runner and felt free, baby, free! I haven't felt this good in quite a while. Hoping for more....

the return of the sinus headache

Up  since 4 a.m. with a doozy of a sinus headache. Yesterday I felt good enough to engage my stretching routine for the first time in months. But plenty of neuropathy reminds me that I am still in the woods. Also, ventured out into the 20 degree F weather to do a couple errands, but just enough to go from car to store, etc. Third variable: I practiced some. I was very careful not to push on the practice side, just some easy long tones and low, in-the-staff notes. One or more of these is responsible for this damn headache, I am sure. I didn't think it was as vicious as it now seems to be so I just took two aspirins. I may have to bump up to the codeine in another hour if things don't improve. Scans tomorrow. I seem to recall being in the middle of a prior round of headaches during the last set of scans. Hope this is not a repeat.

what I say...

Okay. Here is what is happening: Monday 9:45 a.m. MST I get chest/abdominal/pelvic CT scans; usually they are read and reported out late the same day, so I should be able to report outcomes on Monday late afternoon, or Tuesday morning, here at the latest. I asked AbJ how often he had seen a reversal of outcome during tx. That is, a positive outcome by the end of the third cycle and a reappearance of the disease after the sixth cycle. Answer = rare, but he has seen it once or twice. Since he has been in the game for near a couple decades, odds are in my favor.

I will report every 6 weeks between now and 6 months to get my port flushed. On the second and maybe 4th of these occasions, I will see him to discuss my general health. That is the extent of the monitoring process. Then at 6 months I get four maintenance sessions, one per week for four weeks of the Retuxin (R of the R-CHOP). With no changes in health, i.e., a maintenance of the status quo, I will get four of these maintenance sessions over a two-year period. I assume that those interim months will also be taken up with port flushing and checking on my general health. After that: bupkis.

What am I to look for, I asked? Any untoward changes in my general health was the answer. The sort-of big ones, of course, are unexplained weight loss (non interest in food), night sweats, and swellings that don't resolve.

The onc docs assume a direct correlation between length of remission and non-aggressiveness of the disease. And, therefore, the length of the remission will determine Plan B, if there needs to be one. For example, if remission were short (a few months?) he assumes because I am robust (tada!!) that stem cell transplantation would be a good option. But if remission is longer (e.g., years), then a repeat of some part of the current therapy is possible. Usually, they go with the Velcade (damn!) because one of the parts of the R-CHOP is considered too toxic to go through all of that again. His other patients apparently tolerate the Velcade better than I, though I may be mis-attributing here since I have never had the Velcade alone.

The outcomes of his several other MCL patients are good. All are apparently in remission. One has completed his two-years of maintenance and is at this reporting disease-free.

So back at this stand by Monday-Tuesday of next week for an update on the CT results. Until then, hoist a glass.

the beat going on

Driving to Ogden yesterday with Jan and I had another of those light-headed moments. You will be relieved to know, we pulled over, and she drove. None since, and I drove home after we concluded our business there. Today is the 7th day from the last infusion and I am feeling much better. Still with the neuropathy, but experiencing some waning. I expect that will continue to dissipate. See AbJ tomorrow, preparatory to CT scans forthcoming and planning thereafter, I think.

continuing weirdness

I am so impatient. Yesterday was a pretty max day for neuropathy: feet and hands swollen and tingling/hurting to walk on and use. Today, a little, but not much, less. However, about an hour ago, a huge orthostatic bp effect occurred just sitting in my chair reading. I thought I was going to pass out. Quick movement and maybe a lowering of my head and it was gone, but followed by a number of moments of light-headedness. I took a bp: 120/73 with pulse at 78. Doesn't get much more normal than that. Yet, low momentary bp is what that had to be. Well, a brief 45-min nap and I think I feel better. We'll see. Obviously the poisons are still with me doing their insidious work. And then I remember that it hasn't been a week yet since the last infusion. Shit.

the last (?) Velcade Saturday

Wow! I am so positively looking ahead that the fact that the Thursday administration of Velcade has, in the past, reached out and dope-slapped me on the following Saturday, recessed in my thinking. I really had a good Friday after Thursday's infusion. Felt good after the infusion, too. Slept well Thursday night. Had enough energy to try a few little things around the house. Even Saturday morning, with neuropathy increasing, appetite was good. By noon, I was exhausted. I slept 3 hours Saturday afternoon after having done nothing in the morning. By the time I went down I was getting those perceptual silver-and-black rings in my eyesight that don't seem like your regular floaters. On top of that I did another full sleep last night. So I mustn't get ahead of myself. There is a long road ahead to approximate anything like my former condition.

Rained all day yesterday and we received our first reverse-911 call from Hyde Park City telling us where sand bags were if we needed them. The frozen ground has been un-acceptive of this much ground water and there has been localized flooding. The upside is that if it were cold enough yesterday for snow, this morning we would be working on a couple feet to clear. In reality, there is only an inch. The gods smile.

the fat lady hasn't sung, quite yet

Slept awfully well last night. This morning the usual mixed thoughts about food--hungry, but simultaneously gut-churning a little. Two hours and I'm off for what I hope will be my last infusion for a while. I am going to take extra fluids again with this one--which will make it longer--but it will be worth it if it precludes the low bp I had a couple times back. It may also help with constipation which is still dramatic during tx weeks. I will be glad to see the last of that. It usually resolves in the week following tx. Actually, the official pill taking will finalize tomorrow morning when I down my last 5 prednizones. (I don't recall that I blogged about what those steroids have been for, since I only found out a couple weeks ago myself. They are supposed to stimulate the immune system.)

Then in two weeks, I will drink the barium shakes again and get another CT scan. AbJ is being careful about the outcomes here. I can understand why. I have not been able to get him to tell me how frequently he sees a reversal this quickly after a positive outcome just a few weeks previously. (Lies, damn lies, and statistics are located there.)  If the CT scans are good, then no further tests for 6 months. I will have to be available to get my port flushed out every 6-8 weeks, but that won't preclude some travel which we are contemplating. At that point the booster sessions begin.

On the bright side, in a couple weeks or so, I will be able to resume my regular social activities!

the usual

Having slept most of the day yesterday--or so it seemed--during my infusion time, I worried about being up most of the night. Actually, not to worry. Slept from 10 pm to 2:30 a.m. and was awakened by a sinus headache. A couple regular aspirin, and off with the CPAP and I slept off and on until 5 a.m. All-in-all better than usual for the time during tx. But I arose with a serious head and took a couple aspirin with codeine. Much better now head-wise. The usual not-so-good feelings about food, but choked down a regular breakfast along with an anti-nausea pill. I notice that I have 3 refills on that prescription and haven't finished the first yet, so I must be doing pretty well.

We had about an inch of snow yesterday but this is about the sorriest snow year we have seen in many decades. That is supposed to change this weekend with a series of Pacific storms, but the westerly flow suggests they will produce rain on us and snow in the mountains. Many consider that to be ideal.

ho hum another snowy day in Paradise

Just home from the last R-CHOP infusion of this cycle of six. Now Velcade on Thursday and I'm free at last (see MLK--it's his day). A little spacey from the chemicals; and the usual anti-allergenics (Benadryl) at the beginning put me out. I think I slept most of the six hours I was there. My eyes have been driving me crazy with itch. Today a woman in the infusion room was cursing the chemo gods because in women apparently while they lose all the hair on their heads, they do not lose leg hair. So she had to keep shaving her legs. She declared the unfairness of this. We all wondered evolution-wise why this would be. Somewhere in this discussion eyelashes were mentioned. I haven't even thought to see whether mine are gone. Certainly could contribute to my current eye difficulties. Actually, we have had a winter so far in which there has been enough wind that we have mostly been off the EPA's shit list, so perhaps I shouldn't be bad mouthing the small particulates (PM2.5 and PM10) as producing this problem.

Learned a bunch from AbJ today. We will wait approximately two weeks after my last infusion and schedule CT scans again. This surprised me, but makes sense as a double check on the clean bill after the third cycle. I am optimistic about outcomes there. Then we schedule maintenance/boosters at six months from the last infusion (circa July 19). At that time, I get about a 3.5-hr infusion of the R of the R-CHOP, that is Retuxin, once per week for 4 weeks. The staff say no big deal. The R alone is not enough to produce nausea, constipation, etc. And the hair will come back. They say I will be able to fish the next day. We'll see.

whistling toward the gallows?

Weight = 232 lbs.

Well, weight-wise I am back where I started. In a way that is kind of surprising since during the weeks that are away from the actual chemo, my appetite is virtually insatiable, and I am controlling my eating not at all. My body must remember something about its prior set point for weight since the 232-lb vicinity is where I was for a while prior to my change of life last August.

It has been a good third week, as most of them have been: Eating well, a little more energy; sleeping pretty well; still napping on 3 of 5 days, depending. Accompanied Jan to SLC to get her hair done and linked up with some buds for a good lunch. Overnighted at the townhouse with Lisa and drove back the next day. Driving a couple hours tires me out, an indicator of how far I have to come back. Practicing about a half hour a day, but clearly this activity leads to sinus headaches the next morning. I expect this will go away when I finish treatment. I desperately want to play more.


Speaking of treatment,, I go for my last infusions this next Monday and Thursday. As usual not looking forward to the effects but as this is the last for awhile (?) I can do it.

I still have residual neuropathy, so clearly two weeks of no-tx is not long enough to see whether that condition will abate with a longer period of time away from formal chemo. And my hair is trying to grow back. My scalp gets fuzzy after a week or so, and I have been shaving it to keep it looking cleaner. That activity will stop after next week!

I will also try this week to see AbJ about the next phase. To reiterate, I believe I get re-scanned at 6 months and also get some chemo boosters--like once a week for three weeks. But I don't know how much that will make me sick again or otherwise interfere with life its ownself.

snowy fingers

You remember the feeling in your fingers when skiing or otherwise getting them cold on a prolonged basis? They internally hurt as they proclaim that circulation is returning and they are improving. These are my fingers now, without the necessity of going outside to ski. Yet, this seems to me to be a state of improvement. They are less fat than they were. Ditto my feet, which are still sensitive but also much less fat than they were. Ergo, looking forward to seeing how much these symptoms of neuropathy dissipate during this next week of treatment-free time.

It is finally winter here.We got a couple inches snow last night and the plow trucks came by early this morning to clear the streets. Probably a good day to put a log on and do the crosswords.

abide and abate

Just a hair of abatement with the neuropathy, but still fat in the fingers and sensitive on my feet. This morning I think I dropped or missed screwing in every bottle top and can lid that I handled. Probably a good day to stay away from machinery operation. Mid-morning my eyes started itching so badly that I had to anoint them with some of the Tears stuff and then take a pseudo-ephedrin. This seems a clear indicator of reduced immune function. Or is it immune function run amok? And why allergies? It's the middle of winter (supposedly) here and nothing should be growing or floating in the air. Oh yeah: PM10s and PM2.5s. Our air is loaded with them because we are not getting our regular winter storms. In any case, a couple buds are showing up with sandwiches for lunch later on and I will abide the remaining symptoms and enjoy.

the phickle phinger and all that

Happy New Year to all! Had a pretty good weekend. Bought a new(er) ride on the last day in the last hours of the old year. My old boat-puller was starting to come apart. All that adrenalin in the research, the hunt, the negotiations, etc. appeared to defray some of the symptoms that follow the end of treatment rounds. Lisa came up and we had a wonderful and quiet NY's Eve eating scallops and watching movies. But now I am coming down from all of that. Not only did I sleep for 8 hours (yea!) but I also had a wee nap after breakfast.  And the neuropathy is back in spades. My fingers are "phat" and very sensitive, the balls of my feet very tender to walk on, my eyelids dry and scratchy. Indeed all the mucoidal membranes are primed to report. In addition, the neuropathy appears to have spread. It now appears to be affecting at least one of my taste buds. Maybe savory? Food, in which, I am very interested again, is not tasting complete. It's as though some component of taste is missing in action. And this condition does not appear to be sinus-related since my sinuses are open and clear (and perpetually draining!). My smell sense is acute. We will have to watch this. On the plus side, I can see the end game and overall I cannot complain. Much of the rest of my body appears to be functioning. One more once.