2nd maintenance

Except for the time involved--another 4+ hours--there is nothing remarkable to report about my second maintenance infusion yesterday. (Perhaps, in itself, this is remarkable?)  All went swimmingly. I appear to have no side effects that are noticeable. I don't know if the cumulative 4 sessions of maintenance will result in something, but, so far, nothing.

ABJ  (my onc doc, for those of you who have forgotten) paid a visit to the infusion room and did his rounds, so in my turn, I took advantage to ask a question. I wanted to know the status of his other 2 mantle cell patients, both of whom presented before me. One got RCHOP, as did I, but without the Velcade. However, as maintenance, he gets Velcade once a week. Apparently this has been a good regimen for him, ABJ reported, since he has been symptom-free for a fair number of years.  (Velcade every week for years? Wow!) The second patient has not been so fortunate. As I understand it, he got the same regimen that I did (RCHOP + Velcade). His symptoms returned after 3 years. He is now undergoing, or has recently undergone stem-cell replacement therapy,  ABJ cautioned, however, that while younger than I (low 60s), this other patient presented much farther advanced. He also has some other general health issues.  I think that 3 years may have been the median outcome from the Cornell study/trial which we modeled my treatment after.  I did not find out, if the 3-year count was from diagnosis (bad!), end of intensive chemo (better!), or end of maintenance (best! since maintenance is 2 yrs in and of itself).  I will attempt to do so.  Ergo: mixed news. Nothing to make of it as we are all apparently unique cases. And in any case, these other outcomes won't change my behavior appreciably.  But, interesting to know.

I've put on a couple pounds. My daughter makes the most delicious pecan rolls (tutored in the past by her grandmother) and my fishing partner(s) and I take time out from that labor (!) to have coffee and a roll. A couple of these babies a week and voila--heavier.  Like this morning, for example. So I can fish the next day after treatment and my burgeoning good health--those near me say I look better and better and I feel good--appears to be a fact.  Off the sauce for the duration of maintenance. Shouldn't that help? Well, probably not, as it has become habitual to have a virgin tonic and lime (or 2) each evening.

Thanks to all who have taken time to call or email on my current status. It is very meaningful to me that you patiently follow my musings and think to get in touch. Couldn't do it without you all.

Back on again next week, unless things change.

Maintenance

Weight = 234 lbs

Today marked six months to the day of my last chemo, which meant that I started again, on maintenance. The pic is current as of this morning. Maintenance was horribly familiar: all the same smiling faces (i.e., the nursing staff) and the patients (i.e., forced smiles?). We started with a small bag of benadryl to counteract any allergenic reaction to the forthcoming poison and then a large bag of the actual poison (i.e., retuxin). This last one was dripped in slowly to ascertain whether I got into allergenic reaction. I didn't. Entire process was within a lick of 4 hr. Mostly the benadryl made me sleepy, so I cruised listening to Arturo Sandoval's new album--a tribute to Dizzy. (Thanks be to Larry S for that--a fine big band set of arrangements of Diz' tunes, with wonky meters and all.) Jan brought me a sandwich and before you know it, I was on the way home. Felt a little light-in-the-loafers but that may have been due to leaving the infusion center where the refrigerated air had to be in the 60s, while the outside air was in the 90s and the car was in the 100s. I seem to have just as much hair as I used to, but it seems less manageable somehow.  I feel a little tired, even with the sleep during the procedures this morning but it is warm, I am still carrying a load of benadryl and I have been power spraying the deck. I did an hour before I left this morning to culminate 9 hrs to get the grime off. Staining to follow directly.

Faithful readers will know that I may still be in denial. Tomorrow will tell how much this new round kicks my butt. But, I don't expect much and have been given to understand that I shouldn't. So with fresh eyes in the morning, the possibility of several hours among the largemouth bass of SE Idaho will be contemplated.  My buds have all been accommodating. Strum, Plunk & Toot have agreed to meet on Wed eves for the next several weeks, and my lunch buddies ditto. That way I have 6 days between me and those activities and the prior infusion. Fishing can be fit in everywhere else.

So, I hope it is business as usual. My right knee has repaired itself somewhat--I can walk reasonably well on it, notwithstanding still arising poorly. My residual neuropathy is just that--residual. I can and will deal with it all. More if I have exciting stuff to report, otherwise probably not until the next maintenance session a week today.

Ciao.

An Update

I had a minor accident this week which is nagging at me for what it portends. Jan and I were unloading bags of weeds at the Hyde Park green-waste disposal site. This has been redesigned for the convenience of the user, except that the new design has increased the danger of using the site. Prior to the redesign one pulled up alongside one of two massive, uncovered dumpsters, each the length of a semi-trailer. In fact that is how they are hauled away to be emptied: they are winched onto the back of an empty semi-trailer frame. One stood in the back of one's truck to peer into the dumpster. Now they have built a small hill beside the dumpsters up which one drives, so that, instead of emptying your waste over your head into the body of the dumpster one is on the level of the top of the dumpster looking down in. (If you ever fell in, you would not be able to extricate yourself since the sides look a good 10 feet from the bottom.) The idea of the redesign obviously was to get more waste in the dumpsters and less on the ground. Long story short: With my left leg, I stepped between the slump block side of the hill against which the dumpster sits, said hole being about a foot wide. With no place for my leg to stop, I sank to my crotch while watching my right leg, the knee joint of which would not hold me up, slowly give way until was in a split with my right leg splayed perpendicularly from my crotch and horizontally away from the hole and my leg below the knee canted at a good 45 degrees. Nothing snapped, but the knee was definitely torqued. Since that time, now about a week, I have been unable to put much weight on my right leg. This knee joint has been bugging me for months, moreso than ever with the chemo, behaving very arthritically. It gives out on me without notice. Now I really have to hold onto to something to rise. Disuse seems to exacerbate the knee which will hold to allow me to walk once I get going on it. But there are limits: I can't seem to go very far on it without tiring.

Add to this a couple other little facts: First, if anything I am noting what seems to be a sharpening of the pins and needles and pains of the peripheral neuropathy in my legs, including feet, ankles, and probably knees. Ditto a bit more in the arms and hands. And this week, I am back napping almost every afternoon. Conflating factors: I have been somewhat more active in the yard, weeding the tomatoes, sanding a couple of benches, mowing the weeds, also doing a little fishing. (That has been fine, per usual.) Add to this, it has been record hot, and I always slow down a little during summer. But overall, I think again that the neuropathy has ceased receding. I don't want to contemplate what that means. I have fallen off my exercise plan--that is probably part of this feeling more tired, too.

About 13 days to my first booster chemo session.....