a rough patch

We had a pleasant though very low-key visit with Dennis and Sharon on Saturday and Sunday (May 5-6)—low-key because Steve's energy level was very low, and I continued to be concerned about his low blood pressure.  Phone and email consultations with the doctors led to some attempts to adjust the medication, and to a Monday visit to the oncologist.  He took a blood test, found the hemoglobin level down a bit, and scheduled us to come back Wednesday to re-check in case transfusion might be indicated.  However, Monday night Steve slept badly and by Tuesday morning he was extremely weak—and though his blood pressure was within normal range, his pulse was up to 106.  So we called the doctor again and were told to come in (with ambulance help if necessary).  We managed to get there on our own, and once there the higher pulse (now in 120s) sent us for an EKG, which showed atrial fibrillation, which sent us to the Emergency Room for treatment to control that. 

 

We went from the ER to the Clinical Decision Unit for more heart stabilization and overnight observation, and then we stayed through Wednesday also for the blood transfusion which had been on the horizon, since the hemoglobin level did dip below 8.    By the end of the day on Wednesday (yesterday) things seemed enough nearer to normal for us to be discharged, and we got back home around 8 p.m. 

 

Steve is feeling much better, and we are still planning (with the doctor's concurrence) to drive down for our visit with Melissa in Silver Spring from Saturday to Monday.  We're still adjusting meds, and don't know exactly what the forward progress with chemo will be—that will need to be re-evaluated next Wednesday.  For now, we're looking forward to the weekend visit, and are glad that the current adjustments seem to be making that trip a reasonable undertaking.

 

Thanks again to all of you for your ongoing support.

 

--Carol

dancing, bridge group movie, tai chi, visits :

We've had a variety of pleasant activities this week.  On Saturday, we went to Painsville for dancing for the first time since last fall.  Perhaps partly on the strength of the steroid "post-chemo" pill (which Steve takes for just three days after each infusion), we did eight dances—twice our previous amount, and including a polka and a swing! Sunday, we played a little bridge with Clair and Grace. On Monday, bridge group met for a movie instead of bridge, since Keith and Karen unfortunately had to be out of town.  The movie was The Big Year—quite enjoyable—and of course it was nice to visit.  Later in the week we also had several visits and calls from friends, and tried a tai chi class, which we will try again in future weeks and see how it progresses. 

 

Medically, we had a little adventure when the feeding tube detached itself again, so we had a same-day visit to our surgeon who put in a replacement; he has meanwhile called to ask Steve to come in again in the coming week to replace the replacement—I'm guessing he's found a different model that he likes better?  We'll see.  And Steve went in for his scheduled echocardiogram, but we haven't heard anything about results from that.  His blood pressure and energy level were a bit low yesterday; I wonder if that may be a matter of cycling down from the post-chemo pills I mentioned above.  We're keeping an eye on that, and asking the doctors about medication adjustment.

 

Today, we are eagerly awaiting a visit from Steve's brother Dennis and his wife Sharon, who are driving in from New York.  They plan to be here today and tomorrow, so these days should be particularly nice.

 

Thanks again to all of you for your thoughts, prayers, and messages of all kinds.  We continue to appreciate the broad and deep support we feel from all of you out there.

 

--Carol

an encouraging CAT scan report, and other good things

We have two good things to report this week.  The big one is that in our Wednesday meeting, our oncologist gave us more information from last week's CAT scan, and it is quite positive and encouraging.  You may recall that the February scan (after our first series of chemotherapy treatments) showed little if any effect beyond what the radiation had accomplished—so the doctor changed to a more aggressive regimen.  This time, the scan shows substantial improvement in every specific item, as far as we can tell from what the scan reader's report indicates.  The lymph nodes are reduced in size; for example, one in the "mediastinum" (central chest cavity) which had measured 2.2 cm is now 1.23 cm, and in the lungs one nodule which was 2.5 cm is now 5 mm.  And extra fluids in the lungs "have resolved," and "no new pulmonary nodules are present."  All of those items (and some other details with which I will not trouble you) sound good to us.  We're not experts, and we remain warned by our medical folk that this cancer is "treatable, not curable"—but this report at least suggests that we may be moving toward keeping the disease "at bay" (our social worker's phrase) for a while.  So, as W.S. Gilbert wrote in The Mikado, "modified rapture"!

 

In addition, Steve drove himself to The Gathering Place (about a 20-minute drive) for his Reiki appointment this week, and was reminded of the increased freedom he felt at age 16 when he first got his driver's license.  (When he drove for the first time a couple of weeks ago, it was much shorter and with me also in the car.)  We have signed up for a Tai Chi class at The Gathering Place starting next week, so then we will also have some organized exercise—the first since taking leave from the Cleveland Hiking Club.  We continue to have visits and support from friends and family, and to be overwhelmingly grateful for all of them.  Thanks to all of you for checking in on us.  And if you haven't visited yet (or recently), please feel free to get in touch and let us know when you might like to stop by!

 

--Carol

 

   

a better week; a wonderful weekend

 

So, after the worrisome symptoms last week I did call the oncologist, who suggested we might make an emergency-room visit (NOT an attractive prospect), and on our declining that called back to ask that Steve get an extra blood test to check on kidney function.  That test seemed to indicate nothing in particular, which we figured was a good thing.  Meanwhile, Steve has been feeling better, and we hope that whatever it was last week was a passing issue.  We went in on Wednesday for the CAT scan.  We haven't had a full report on that, but the doctor's call on Friday said that at least the lymph node enlargement seemed reduced, which is a good thing. J  Our next meeting with the doctor (oncologist) is for this coming Wednesday, when we expect we will get a fuller report on the CAT scan results as well as the next chemotherapy infusion.

 

But the great thing was the weekend.  Matt and Celeste and Dylan arrived by air from Boston on Friday afternoon, and Melissa and Aaron by car from DC Friday evening, and we had a fantastic (though short) weekend visit together.  Dylan is a delight to watch and listen to, of course, as he loves his life with Matt and Celeste and is willing to share bits of it with us.  Aaron made a great buttermilk pancake breakfast for all of us on Saturday, and it was a treat to have Melissa and Aaron in the house along with Matt and Celeste and Dylan.  We watched the baby, and visited (and Margie came up from Ravenna to swell the crowd ;->), and generally had a good time.  All of the kids helped me learn a little more about my new computer, as well…(my old one hung up its spurs a couple of weeks ago, so I've got a new one to learn—aargh).  All of this was enhanced by the fact that Steve's energy level seems to have returned to our recent "new normal," given that he took an afternoon nap when Dylan did—all good.  We were sorry to see everybody leave for home on Sunday, but are looking forward to more visits very soon.

 

Then, today (Monday) Steve had a date to meet with a high school AP English class to speak to them about tips for AP Exam prep—the first consulting gig he's felt up to doing since November.  We drove over to the west side for it; he enjoyed it, and the teacher whose class he saw (as well as the school principal) expressed their appreciation.  And upon coming home he was hungry (a good symptom), and had some of Olivia's chicken soup for supper.  So you see, all in all a good spell. 

 

Thanks again for all of your support, and here's hoping for more weeks like this one!

--Carol

a mixed report

So, another week has slipped by.  It has had many nice features.  Our follow-up visit with the radiologist on Tuesday was good--she was pleased with our reports and with all indicators she could observe.  She is interested to see the outcome of this week's CAT scan, as of course so are we.  But short of that, what she could evaluate was positive.  We had a wonderful five-day visit from my sister Nora, who drove to NE Ohio from W New York to stay with our other sister Margie in Ravenna from Wednesday to Sunday, and came up to see us each day.  On Friday, Keith and Karen came and played bridge with Steve and Nora in the morning, and after I got home from school Margie came up, too.  All of these visits were so heartening and enjoyable.  On Saturday, Nora also joined us at a play reading group meeting, and took a major role!  :)  Another very pleasant experience.

So, why "a mixed report"?  Starting on Saturday, Steve has been unusually tired and weak, and has had several episodes of the nausea and retching which seemed recently to have subsided almost entirely.  He's taken several doses of his "as needed" pain and nausea meds, and seems reasonably comfortable between episodes; but yesterday he ate nothing by mouth (though we continue of course with the Peptamen through the feeding tube), and today so far has had just a teaspoon of jello.  He slept in his chair virtually the whole day yesterday (Sunday).  Today, he was up and dressed  but already back asleep in the chair by about 7:15 a.m.  This could be partly normal fatigue from the extra visiting last week, but it feels like more than that, and I'm (obviously) concerned.  I am likely to report in with the doctor later today if this pattern continues--not that I can think of anything he might suggest that we're not doing already.  

Sorry (again) to end on a low note, but I figure that those of you who are reading this are doing so because you want to know what's actually going on with Steve.  And that's what's going on at the moment.  Thanks again to all of you for your support, in whatever forms it takes including reading our news reports.  

--Carol

an easy chemo and a quiet week

Not much to report this week.  The oncologist seems to have figured out a very good mix of anti-nausea infusions, so that last Wednesday's chemo has caused hardly any problem at all (just sensitivity to cold for several days, mainly).  CAT scan in two weeks will give us some notion how effective this round has been.  Supportive visits, notes, and phone calls have continued [thanks, all!], and yesterday Steve drove for the first time since he got sick.  It was a short trip, but still a nice step forward.  I've suggested that he might want to offer another blog from his point of view, and he has said he may do so pretty soon.  But for now, in case any of you have been checking in and concerned about the lack of news--all is going quite well. :)
--Carol

a quiet week

Things continue to go along fairly smoothly for the present.  Steve has had several visits again this week while I've been at school.  We played bridge with Keith and Karen on Monday, and bridge group met all together on Wednesday.  Steve had Reiki at The Gathering Place, and yesterday attended a meeting of the Novel Club's Program Committee where they finalized plans for this year's Annual Meeting and tentatively set things up for next year.  Together, we finished our Great Courses tour of the Metropolitan Museum of Art in New York! 

In general, Steve is usually fairly comfortable.  He is sleeping pretty well at night (albeit with help of a pill—but in the past that hasn't always worked, so we're glad it is working now), and able to enjoy socializing as well as reading and puzzles.  This week he enjoyed a phone call from Uncle Sonny (as well as from Melissa—and likely will talk to Matt later today) and the news that Dennis and Sharon are planning another visit. It's true that any extended activity is liable to leave him tired for a while afterward, but the energy investment is very worthwhile.  Ongoing thanks to all of you who are helping us to keep those activities coming, and to all who are keeping us in your thoughts and prayers.

--Carol (and Steve)