a bit of a hiccup

We went in this morning for our fourth-of-four chemo infusions for this cycle, but the preliminary blood draw showed that the white blood cell count was too far below normal for the treatment to go forward. Normal range is 4.5-11.0 of whatever units it is they count, and Steve's reading was 1.8. The nurse said this is not surprising, because white blood cells are generally hit hard by chemo treatment, and a rest from the chemo will probably result in their making a good comeback. Since we had two "off" weeks coming up anyway, this day off will result in a three-week recovery period, so the reading should likely be fine next time. Meanwhile, we still have the September 17 CAT scan on our schedule—the results of which should give us an idea of what progress the chemo has been making against its actual target.

I expect it will be a few weeks before there is further news. We won't get the CAT scan report until after our short trip to Oregon in two weeks. Possibly Steve will have something to add to the annals between now and then, but I will most likely check in again sometime in the range of 9/26.

Thanks, as always, to everybody for your support. Take care of yourselves.

--Carol

Still moving on

Our weekly blog-entry pattern seems to have stretched itself out a bit.  I had thought Steve might be doing the next entry, and he intends to do so again one of these days, but meanwhile here's a short update for anyone who is still checking and might be wondering how things are going. J

 

The second and third installments of this four-installment chemo round have been successful (that is, the critical blood counts have been in good enough ranges so they could go forward), though Steve's energy level has remained generally somewhat lower in these past two weeks than it had been recently.  He has been trying to get by with more food by mouth and less time on the feeding machine.  He likes the freedom from the machine, but his weight has continued to drop—so some reversal of that pattern may be necessary.  Yesterday he ate pretty well and used the machine overnight, and this morning we were both pleased to note he was back up a couple of pounds.  Next Wednesday is chemo #4, and then after a week off we get another CAT scan to assess the progress of the chemo vs. the cancer.

 

We are relaxing at home over Labor Day weekend. (Steve is napping now.)  I have been busy with the start of school, which seems to be going well but keeping me busier than I expected, for some reason.  We've enjoyed a bridge group evening and have another coming up soon, and will soon be rescheduling the playreading group that got canceled when we went to Flint.  In September we plan to visit Eddie in Oregon, and then for October we seem to have (tentatively, at least) scheduled out-of-town activities for every weekend of the month. In addition, Steve has scheduled himself for at least a couple more teacher-training programs, and is in touch with his textbook co-author and their publisher about some further work in bringing their texts to online format.  All of this scheduling clearly shows an optimistic attitude going forward. Our total schedule for the next couple of months looks to me challenging even for normal circumstances, so I guess we had better start storing up our energy now!

 

We've also had regular as well as irregular visits with many friends, and it continues to be true that social contacts are highly therapeutic so we hope you will all know that we are always happy to see you—please don't take the above paragraph's crowded-schedule content as a suggestion to stay away!

 

We hope all is well with all of you, and we thank you again for your support.  Enjoy the last bits of summer.

 

--Carol

keepin' on keepin' on...

So, three weeks instead of the predicted two between entries—but on the whole a good stretch.

 

We did have a wonderful week in Cambridge, watching Dylan work at his language and counting skills.  A week-long visit is definitely better than a weekend one for getting to know a little person.  By the time we left we were clearly "Gamma" and "Gampa," among expected members of the household, and had our assigned seats at the kitchen table—all really very happy things, if you don't count the sadness of saying "goodbye till next visit."

 

The other big event has been Steve's first-since-November teaching gig.  He signed up to teach a three-day AP English training in Flint, Michigan this past week, and was very excited to be feeling well enough to do it.  At first he thought he'd drive out on his own, but as the time approached I felt too nervous about his driving alone (especially back home after a day of teaching), so I went along.  He was, as it turned out, glad to have me do much of the long-distance driving, and I got quite a lot of my school-prep work done with my computer in the hotel.  The training went very well, and he was energized and excited to be "back in the saddle" for a change.

 

The day after returning from Flint (Thursday, 8/16) was chemo time again.  His blood counts were pretty good and the infusion went smoothly, though he's feeling somewhat more than usually "beat-up" with the side effects these couple of days.  After two weeks free of chemo, his system is sort of what-the-helling more than it did in the later weeks of the previous cycle—though not as badly as during week one of that previous cycle, so I guess that's a useful comparison.  So far, the pills he has at home are keeping the side effects under control, and we look forward to their subsiding with time.  Meanwhile, we had a quiet evening at home to celebrate our 43^rd anniversary.

 

After the end of this four-dose cycle we'll have another CAT scan to assess the progress of the chemo against the cancer.  That will be in mid-September.  School starts for me again week after next, though there are Introductory Week activities during the week coming up.  And Steve hopes to get more workshop gigs in this fall season.  So, onward we go. J

 

Thanks to all of you for following our progress and continuing to send your support over all kinds of media and waves and vibrations.  We feel it, and it helps so much.  Enjoy the last bits of summer!

 

--Carol

 

 

 

fairly smooth going...

This week's blood tests were still okay, and the chemo went smoothly.  Steve has been feeling basically okay, with the expected side effects of the chemo (fatigue and some digestive challenges) remaining within a manageable range.  We've had visits from friends;  he took a walk with Clair all the way into the village and back; we had a good time at a senior-center dance; and he stayed up to watch the Olympics opening ceremony.  (I, on the other hand, conked out before the end!)

 

Now we have two weeks off from chemo (this regimen is a 4-weeks-on, 2-weeks-off pattern), during which we will spend a week in Cambridge with Matt and Celeste and Dylan.  We expect that to be great fun, but mostly (we hope!) outside of the "health updates" subject range—so it may be a while before we post again.  We hope you all will assume a "no news is good news"  response to this potentially silent period, and will continue to send your supportive thoughts and prayers and vibes in whatever way suits you.  Thanks again for all of that!  And keep enjoying your summer, as we will keep trying to do. J

 

--Carol

a better week

This week has been consistently smoother than the one before it, for which we are very glad.  Last Saturday evening (last week's blog entry was a morning effort) we went out dancing, to our favorite dance floor and one of our favorite bands, and had a brief but very enjoyable time—a good number and variety of dances, and some encouraging conversation with friends.

 

Sunday we drove to Ravenna for brunch with Margie and Ted (first time we've been there since last October, when we had just received the diagnosis).  That visit also included their friend Ray with whom they share the pursuit of steel drum music;  it was nice to see him again, too.  On Monday we had a fairly quiet day at home.  On Tuesday, I went to school and finished the first pass at organizing my new office (several more passes to go, I'm afraid).  Steve drove to his Reiki appointment in the afternoon, and we both went to our Gathering Place support groups in the evening.

 

Wednesday was chemo day again—but unlike last week, this time all the tests were fine and the treatment went forward (though with a 20% reduction in the active drug).  Everyone there agreed that Steve was looking better than last week, which confirmed our own impression that things are getting back into a better balance. 

 

Wednesday was also the beginning of Nora's visit, which she began at Margie's since we couldn't predict in advance that our chemo day would go so smoothly!  But on Thursday Nora came up to us, and we had a very nice day together, enhanced by visits in the morning from Ken and in the afternoon from Olivia.  On Friday, some of the Ravenna contingent came up for a mid-day celebration of Margie and Ted's 32^nd anniversary—and Steve prepared the risotto main dish, which was a great success!  Then in the evening Nora and Steve and I walked down into town for the Little Theater's production of Hairspray, which was very well done and enjoyable.  And all three of us were in good shape for the walk back home, uphill though it is. J

 

So now it's Saturday again.  Nora has left for home, and Steve is having a well-deserved nap.  He continues to feel optimistic about his progress (in spite of the occasional snags, the overall trend seems to continue upward), and we remain convinced that optimism is in itself salutary.  Thanks again to all of you for helping us to continue onward and upward!

 

--Carol

 

 

some challenge with the chemo

Steve's initial reaction to last week's new chemotherapy treatment seemed fairly mild, and we had a good time watching Melissa and her curling team do well at the Tropicurl bonspiel in Pittsburgh over the weekend.  By Monday evening Steve was dragging a bit, but we did have a good time at bridge group.  However, by Tuesday a predicted side effect (severe diarrhea) set in with a vengeance, and although we had (and Steve used, to some extent) medicine to counteract it, the results were fairly serious.  Tuesday afternoon we canceled a couple of engagements and returned to the 24/7 feeding machine hookup; but by the time we arrived at the infusion center Wednesday morning for the scheduled chemo infusion Steve was pretty badly dehydrated and his blood test showed not only low platelet count but also seriously low potassium—and possibly other issues that I'm not recalling in detail.

 

Considering all of this, the doctor held off on the chemotherapy for this week and instead checked Steve in for another overnight stay at the Clinical Decision Unit for observation and rehydration and attempts to get the various fluids back in balance.  That along with a different diarrhea medicine seems to have worked well.  We were released around noon Thursday, with a follow-up blood test scheduled but Steve feeling generally better.  Thursday afternoon was sort of a whirlwind, since we had to squeeze in an emergency visit to the surgeon to insert a new feeding tube (the previous one fell out as we were packing to leave the CDU—the balloon that holds it in place disintegrated again ;-<) and I had a dental appointment to keep on the way home.  But we got it all done, and had a quiet evening at home.

 

Friday morning we had a normal breakfast (off the feeding machine again :->), and went to our play reading group in the afternoon.  On the way there we stopped by the lab for the follow-up blood test.  Results of that were pretty good—potassium still a bit low, but the current prescription is to keep up the once-a-day potassium pill and eat some bananas.  J

 

That's our story for this week.  We have another infusion appointment (plus echocardiogram) scheduled for this coming Wednesday, at which point the oncologist will decide how to adjust the dosage—and on we go.  We hope that you all (our friends and loved ones near and far) are well, and that you remain aware how much we appreciate and rely on your ongoing support, both expressed and tacit.  It is such an important part of our therapy!  So, thanks again.

 

--Carol

another CAT scan, another chemo shift

I see it's been two and a half weeks now with no blog post.  That has been on the whole a continuation of the "no news is good news" procedure—not a lot to report, though I haven't deliberately refrained from saying so.  Steve has been working on weaning himself from the feeding machine (as he mentioned in his last blog entry).  For the last week or two he has been eating three small meals plus the occasional snack during each day, and using the machine only at night.  His weight has gone down a bit, though not consistently or precipitately.  (BMI scale shows him now just on the border between "normal" and "overweight." ;->) He would love to go off the machine entirely, but that will require significantly increasing his daytime caloric intake.  He keeps aiming for that, so we'll see how it goes.

 

Yesterday we visited our oncologist, who showed us results of last week's CAT scan.  Unlike the previous one (in late April), which showed good reductions in the cancer spots, this one showed increased issues ("atelectatic opacities" and "a new nodular opacity") in both lungs—not big things, but bigger than they were last time, which is of course disappointing.   One of the blood tests, for carcinoembryonic antigen (CEA)—which the doctor described as an "imprecise measure of the amount of cancer cells" in the body—had gone up significantly [usual level in healthy nonsmokers is below 3; Steve's level had gone down to 6 in May, but back up to 30 in June and 39 yesterday].  And the CAT also showed some increased fluid accumulation around his heart, which was one problem involved in our last overnight hospital stay. 

 

Considering all those things, the doctor decided to change the chemo regimen again, this time to Camptosar, in a cycle of four weekly doses followed by a two-week break.  We got the first dose yesterday, and so far no bad side effects have showed up. 

 

The good news is that Steve continues to feel pretty good ("so darn good," as the doctor said, that he even hesitated to change the chemo regimen).  Steve has gone walking with Clair a couple of times, and plans to do more of that.  He regularly drives himself to various visits and appointments now, and as I mentioned above he's eating more and often enjoying it quite a bit.  And except for the specific issues in the long paragraph above, the CAT scan showed stable and normal conditions in other areas.  We plan to drive to Pittsburgh this weekend to see Melissa and her team play in a curling bonspiel; we will return to Columbus July 23-24 for a bar-exam tailgate related to my law school work; and we have booked a flight to Boston for another visit the first week in August. 

 

So, with thanks to our medical team and to all of our supportive friends and family, we continue forward with energy and optimism.  We hope that you all are well, and will keep in touch in whatever ways work best for you.

 

--Carol