a more difficult week

Early this week we experimented with unhooking the feeding pump and administering the daily allotments of Peptamen one 250-ml can at a time to the feeding tube via a large syringe.  Though that wasn't an entirely comfortable process, Steve appreciated being free of the attachment, especially for night-time sleeping. This seemed to be a pleasant step forward, though at the same time he began feeling more unsettled and less inclined to snack on various foods by mouth.  The resulting decline in caloric intake has been a disadvantage, and following the developments described below we've re-connected the pump.

On Wednesday we met with the oncologist to discuss the CAT scan results and the next steps.  That conversation seemed to me somewhat  more clearly serious than the report I had received second-hand from Steve after the doctor's initial telephone call.  That is to say, the doctor reiterated that in the upper part of the body the tumors seem shrunk/less active--but this time he speculated that most of the "credit" for that improvement probably still goes to the radiation.  And the "cancer activity" in the abdominal region (including liver and lymph nodes) was described as continuing growth of the tumors there --so, he said, we need to "change our strategy" with the chemo, since it's not making headway against the target growths—which are "still not under control."  The MUGA scan showed normal heart function, so stronger chemical treatments were not contra-indicated by that test.  Then he said (again) that before going ahead with any chemo, he always asks the patient whether he *wants* to go ahead with a harsher treatment.  And Steve said that yes, he did, in the hope that his continuing and recently-increased abdominal discomfort could be lessened by such treatment. 

So.  The new chemo regimen is a three-drug combination, two of which are infused once every three weeks.  We had the first (four-hour-long) infusion Wednesday.  The nurse had to change arms for the IV partway through, because the arm was tingling, burning, and showing redness.  The second arm didn't get that way by the time it finished, and the redness in the first arm did subside, so the nurse said he thought everything was okay but we should contact them if there was a problem.  The third drug is taken orally, two tablets in morning and three in the evening every day throughout the treatment.  Swallowing them Wednesday evening didn't go well, so we've switched to grinding and dissolving them and putting them into the feeding tube via syringe.  Disappointingly, Steve has continued to feel quite nauseated and to have recurring episodes of dry heaves (no productive vomiting, since he doesn't have any food in his upper stomach) since we got back from the chemo late Wednesday afternoon.  I emailed the doctor about this Thursday evening, and he called Friday morning to suggest coming in for an additional anti-nausea infusion.  Since I was at school, our home health aide drove Steve to the Infusion Center for that treatment, and the episodes stopped while the infusion was actually going on (several hours)—but have restarted since then.  He has a spell every 4-5 hours (including being awakened during the night by it) and feels nauseated pretty much all the time between spells.  We don't know how long to expect this may go on (just first few days after a treatment?  or for the duration of this regimen?).  Unfortunately but unsurprisingly, this condition keeps him from being able to take any significant amount of food by mouth (so he's losing weight again) or to drink much in the way of fluids (so he's pretty dehydrated also).  Altogether not a promising situation.

We had planned to drive down to Silver Spring this weekend to visit with Melissa and attend her Cathedral Choir concert, but have had to give up that plan.  Presently (Saturday morning) Steve is sleeping in his recliner.  I haven't administered his morning medicines yet, but I'm unwilling to rouse him from an apparently comfortable rest to do that.  (This is one significant difference between home care and hospital care…)  I'm pretty sure that whatever good the meds may do, it won't be worth more than the sleep.

Sorry to post such a less-heartening report, but that's the news from here.  Thanks again to all of you for your ongoing support—your thoughts and prayers and the continued sprinkling of cards and emails and visits all help Steve's always-strong spirit keep as upbeat as possible.

--Carol

another busy week

February 20, 2012

This past week was our "week off" from chemotherapy, so on Wednesday we instead went to the Imaging Department for the CAT scan which would provide our oncologist with information about what progress the six chemo infusions up to now may have achieved.  The scan itself was a fairly quick procedure, and we were back home much earlier than usual for a Wednesday.   The doctor called regarding results on Thursday while I was at school, so only Steve got to speak to him.  He had a "mixed report" to give, he said.   Some parts of the image looked positive—the upper part, showing the esophagus and the lung spots that had been noticed before, looked better.  The lower part, including liver, showed cancer activity still going on.  And it was not clear whether there might be some enlargement of the heart, which could influence choice of chemicals  as we go forward with the next round of chemotherapy.    To further clarify that issue, the doctor has ordered a MUGA scan (usually pronounced, apparently, "mugga"—even though "mooga" would sound nicer and seem a more logical reading of the acronym).  According to Wikipedia, "the MUGA test involves the introduction of a radioactive marker into the bloodstream of the patient. The patient is subsequently scanned to determine the circulation dynamics of the marker, and hence the blood."   That test is scheduled for Tuesday morning (tomorrow, February 21).  And our next chemo, along with our oncologist appointment, is scheduled for noon Wednesday.  So, still a busy time medically speaking.

Highlight of the week, of course, was the visit of Matt and Celeste and Dylan, who flew in from Boston Friday afternoon and stayed until Sunday.  It was a pure pleasure for us to have them in the house, and to see Dylan toddling around and making the place his own.  Even when he was a little tired/fussy, and even though Steve had less energy to play than he would have liked (so Steve did more watching than active playing), the whole visit was a joy.  Dylan did a lot of laughing, especially while playing with the red foam rubber clown noses we got at a dance a while ago (where one of the dancers was a professional clown) and brought home as a reminder of the Red Nose Day charity drive we remember from our year in England.   He also found it hilarious to watch (and listen to) his parents eating shrimp chips as part of our take-out dinner from Ho Wah.  All laughter is good, but baby laughter is really tops.

Then Sunday evening, another bridge group get-together—the women took me out to supper at Yours Truly, and the guys stayed in with Steve and played bridge.  It's so great to have this surrogate/extended family group close by us and providing such constant and ongoing support.  We also had visits from other friends (some when we've both been here, some to Steve when I was out at work);  grocery shopping help from Andrea;  and supportive messages from family and friends all around.  Thanks so much to all of you for everything you're doing on our behalf.

--Carol

February 14, 2012 update

February 14:  a Valentine's Day update

Do not read this blog entry if you have a hard time with excessive sentimentality.  I want to tell about a moment in this experience that seems to me to be of great importance, but one that could easily be lost because only Carol and I know about it.  It's a Valentine Day story, but it's personal, and I'm aware that it might cause you some discomfort.  So I am giving you a chance to back out.

We are back in the end of November, when I had the surgery to insert the feeding tube.  That all happened in the rush of emergency procedures.  I had been at the Clinic for a radiation treatment, but the radiation oncologist, upon learning that I had lost almost all my ability to swallow, determined that we could not put that surgery off any longer, and directed me to enter the hospital that night as an emergency patient and have the surgery as soon as it could be scheduled.  This was an ironic development, because the original plan was for me to have the surgery first and the radiation after, but for reasons that were never clear to me, the medical team chose to proceed with radiation first.  So on a Monday evening I went into Marymount Hospital, and the procedure had to be worked into the already full schedule of the surgeon, who was not very happy about the change.

I remained in the hospital Monday night and all day Tuesday, during which time I received continuous intravenous infusions of liquids, since I was so dehydrated.  I suspect they were saline and glucose, and they continued through Wednesday morning.  The surgery was booked for noon.

I guess I was pretty much in a daze that whole time, but I remember clearly being told that it was time to go downstairs to the operating room.  So the orderly got me onto the gurney and Carol came along as he wheeled me to the corridor of the surgery wing.  At a particular spot he said to her that she could not come any further, and she needed to return to the waiting room.  We said goodbye to each other, and I was brought further in.  The orderly took my glasses, without which all I see are huge dim fuzzballs, and told me that the doctor would be with me "in just a minute."

I had to wait about an hour for that "minute" to pass.  During that wait I had no one to talk to and nothing to look at--nothing to do in fact but think.  And for the first time, I believe, I began to think that I might actually die on the operating table.  It's not an unreasonable fear in the face of any serious surgery.  Even though I had no particular reason to think the worst, I thought the worst:  I might never see Carol again or, Melissa or Matthew or Dylan.  And once these thoughts found their way into my consciousness, they would not leave. 

So I concentrated on the question of what I wanted my final thoughts to be.  Here I was on the operating table, about to be wheeled into the operating room, and there she was in the waiting room, doing I had no idea what and thinking whatever thoughts visited her.  Maybe she was worried to the same degree I was.  And I remembered a poem that she and I had both taught to our American literature classes at Shaker, a poem both of us loved.  It's "To My Dear and Loving Husband" by the American poet Anne Bradstreet.  She lived in puritan New England in the 17th century, and I had always found this poem to be especially touching in its message and delivery.  I always thought that Mr. Bradstreet was a very lucky man to have a wife who loved him so much, one who was able to express that love so effectively and give that love immortality.  I also think that the poem is equally effective if the speaking voice is the husband's rather than the wife's.  It would take the rearrangement of only a few words to change it, but I remembered it as I had known it, and recited it to myself over and over, as Mrs. Bradstreet had written it.

            If ever two were one, then surely we.
            If ever man were loved by wife, then thee.
            If ever wife were happy in a man,
            Compare with me ye women if ye can.
            I prize thy love more than whole mines of gold,
            Or all the riches that the East doth hold.
            My love is such that rivers cannot quench,
            Nor aught but love from thee give recompense.
            Thy love is such I can no way repay.
            The heavens reward thee manifold, I pray.
            Then while we live, in love let's so persever
            That when we live no more, we may live ever.

A full expression of love characterized by simplicity and sincerity--I said these lines to myself over and over.   The most intense lines, I think, the most beautiful, are 9 and 10.  After four lines ("I prize thy love ... recompense") of deliberate hyperbole she writes a line of absolutely literal and simple and sincere reality:  Thy love is such I can no way repay.  Nothing hyperbolic there.  And she follows it with an equally sincere and heartfelt prayer, significant in the context of her Puritan environment:  The heavens reward thee manifold, I pray.  I decided I wanted those to be my final thoughts.  If the time had come, I wanted to acknowledge all that Carol had done for me--not only in this illness, of course, but throughout our 42-year marriage--and my hopeless indebtedness to her for all of that.  So I said those lines over and over until they wheeled me into the operating room and gave me the anesthetic that knocked me out.

The conclusion of the story avoids the most dramatic possible developments.  I came out of the surgery however many hours later--I really don't know--and there she was.  Someone returned my glasses to me and I could see her, her image distorted now not by myopia but by tears.  And of course, in the time since, the sum of what I owe her has only grown like the national debt.  Since I have no hope of ever paying it off, I recite those lines still.

Well, if you read this in spite of my warning, you got what you had coming.  It's a personal moment in my experience, I know, and I can appreciate the feelings of those who would prefer not to have private matters placed before them.  But it is too important to me to leave it a candidate for oblivion, and I decided that I wanted to share it with whichever of you chose to read it.

Another pretty good week

 

Just to keep things current, here's a (fairly) short account of the first full week of February.  We had a great day of visiting on Monday—Olivia Schwartz came with matzo ball soup; John and Liz Schutter came to play bridge, and also brought soup—theirs is chicken-rice; and Anne Ogan came to visit and leave an entertaining book.  All that good company is very heartening and we continue to appreciate every bit of it.

On Tuesday we both went again to The Gathering Place and met with our respective groups.  This week both groups included people reporting on very difficult circumstances in their individual situations—giving us strengthening perspective as well as opportunities to lend support to others whose positions are even more challenging than ours.

 

Wednesday was our sixth chemotherapy appointment, and this time also a meeting with the oncologist.  The chemo seemed to go smoothly enough, as it has before.  Hemoglobin level was 11.1 this time, which the oncologist opined was holding up "nicely."  Next week is our "week off" from the chemo, so next Wednesday we instead have a CAT scan; then the following week we are scheduled to confer with the doctor over the scan results, and begin the next series of three weekly chemo infusions based on those results.  When we asked what the ongoing plan looks like at this point, he said "three weeks on, one week off, repeating until further notice."  ;->  So—of course "further notice" could come at any time, depending on what the scans show and what symptoms present themselves.   But at least there is a tentative ongoing plan in place, which feels like more predictability than we've had up to now.

Thursday we went out dancing again in the evening.  Again we danced just a few numbers, and visited with friends we saw there.  Friday morning was a particularly tired one for Steve (the dancing does keep us out later than our currently usual bedtime), but the outing has compensating advantages, we think.   And later in the day our next door neighbor stopped in for a visit.  Steve enjoyed seeing him, and looks forward to more visits which may include some iPhone app tutoring (which then maybe Steve can pass on to me!). 

Saturday morning  we had several inches of snow outside and more steadily falling—but the Schutters came over again for an afternoon of bridge, which was again very enjoyable.

For today (Sunday) there's yet more snow, and I have a file-cabinet-worth of school prep work to do, so a quiet day at home seems indicated.  I think that's it for now.  Onward…!  And again, thanks to all of you who continue to send your support and wishes in all the many forms those take.  We both find them very heartening.

Carol

A Note from Steve

February 6, 2012:  filling in a little

I'm very grateful to Carol for composing the blog entries that she has, and to Celeste for organizing and facilitating the whole thing.  I am going to supplement what Carol wrote not to contradict her at all, but just to fill in parts of the picture.

At the time of the diagnosis I decided that I wanted to be guided by two principles:  take an optimistic rather than pessimistic view, and proceed as close to normal as possible.  The first I think you'll all agree we have managed pretty well.  Many of you have commented on that, and in fact, it is the upbeat nature of Carol's most recent writings that prompts me to write this.  The second is harder to do.  For one thing, I am tethered to my feeding machine most of the time, and while it is portable (and while I can be disconnected from it any time I want), it is still a presence in my life that needs to be considered whatever I choose to do.  The other block to living normally is that I just don't have the energy to do the things I used to do and still would like to do.  So most days have fallen into a sameness--actually two possible samenesses--and neither can be described as very normal, not for me at least.

Most days I am at home and I spend a great deal of time in my chair, sometimes napping, often reading or watching reruns of Law and Order on TV.  I can get up and move around the house when I want to (taking the feeding machine with me), but the fact is that except for my desk all the way upstairs where my desktop computer is, I don't have much reason to be elsewhere, and I don't have much else to do.  Near my chair I have my i-pad and my phone, I bring a book to read, and quite important to me, I have a display of items that represent the outpouring of generosity and good wishes that I have received from so many of you.  There are several photographs of Dylan in plain sight, so my chair, which I suppose comes dangerously close to being a man cave, is not a bad place to be.  The other routine day is one on which I have a doctor's appointment or some kind of treatment.  My chemotherapy sessions take the better part of a whole day, so when I have that, I don't hit the chair until late afternoon, and then I'm usually pretty worn out and need the rest I get on other days.

But more and more I am finding ways to get out.  I am lucky to have certain particular friends--you know who you are--who take a lot of initiative in providing me with opportunities to get out and do something.  I had a session of reiki (a soothing energy-directing therapy) last week.  I found it very relaxing, so I am returning for another this week and may make it a regular thing.  We've gone out to play bridge a few times, and as we have said, we have even returned to ballroom dancing, which we enjoy enormously but which does require a lot of energy that I don't have, so we have to be sure to take it easy on the floor.  When the weather is more agreeable I hope to take short walks, even down to my corner, just to get some fresh air and muscle movement into my routine.  I don't know when I'll be able to return to the hiking club, which I really miss.  Their shortest hikes are three miles at twenty or twenty-two minutes per mile.  Ordinarily that is not a challenge, but I am far from being able to walk that distance or at that speed now.  Getting back to hiking is a major activity goal for me.  At the beginning of the illness I had a very hard time concentrating on anything that required extended thought, so I stopped reading (in the middle of a good book I will add), but I'm doing better now, and I am hoping that I can return to our novel club for its March meeting.  I'm halfway through the March novel, and I look forward to rejoining that group when I can.

So you can see that the positive, cheerful, optimistic descriptions you've been getting have their foundation in reality, and I am happy to confirm that all in all things are going about as well as we have any reason to think they might.

But that, of course, is only a partial view, and there is more to be said.

Someone--I don't recall who--said, "You must be angry.  This is so unfair."  Yes, I am very angry--but at whom should I direct my anger, and what good would it do?  Yes, it strikes me as very unfair too, but what can I do about it?  In certain private moments I allow myself to dwell on my anger because I don't think it's a good idea to pretend otherwise, and in all likelihood, when my condition grows worse, I will need to express that anger more often and more openly.  But it is there now, and it would be dishonest to deny it.

I am also very sad, even if I smile and make jokes and appear to be otherwise.  In fact, I would say that my emotional dial has two settings now, normal (that is, I react to whatever is going on as almost anyone would), and unprovoked sadness.  There are times when, for no reason that I can discern, my throat tightens and my eyes fill with tears.  I'm not talking about the times when I have to face a very sad reality, which does come up now and then.  I just mean that the Great Switch Flicker chooses that moment to set my dial to sad, and I react accordingly.  It usually doesn't last that long, but it serves as a reminder to me, as if I needed it, that we are headed to where there will be more tears than laughter.

And related, I am filled with sorrow, mostly about the future that awaits Carol and the kids.  Even as I type this that is a difficult topic to contemplate.  I hope that my family and friends won't forget them, and won't let them be too lonely, not only in the immediate time of their loss, but afterwards too. 

I've enjoyed visits, and phone calls too, from several of you.  Carol has mentioned a few of my visitors by name, but there have been several others, and I always appreciate the company and diversion these visits provide.  She tells me that when I have company I am animated, and she is convinced that such animation has a positive effect on my health.  I am still unable to keep up with email responses, so I hope any of you who have written to me in the past few weeks and not heard back (which would be most of you) continue to be understanding and trust that I have read and in all likelihood reread your messages.  A few of you are very faithful (persistent seems like a negative word right here, maybe suggesting nagging, which I don't mean at all) correspondents, and I treasure your messages more perhaps than you know. 

So you can see that I would also say that the situation is more positive than negative in many ways, but I had a few things to say that Carol might not be in a position to comment on.  Thank you for taking the time to check out our blog, and thank you for all the kind words and actions you have sent my way.  I am aware that some of you have shared this blog address with friends I have not been in touch with.  I am very grateful for that; it has resulted in contacts I wouldn't otherwise have had.

February 4, 2012 update

February 4, 2012 –another pretty good week

Just a few updates, since less time has passed between postings this time.

Last Sunday continued the pleasant weekend, adding to Melissa's presence an afternoon visit from Margie and from Ken Nosse, a longtime friend from our Shaker teaching and Unitarian church connections.  Monday Melissa left in late morning, and in the afternoon we played bridge at Rankins' again.

On Tuesday, I went back to school; Steve enjoyed his Reiki session at The Gathering Place, and has scheduled another for next week.  On Wednesday, this week's chemotherapy seemed to go  smoothly.  The hemoglobin count was up to 11.2—further progress, and enough so that at the nurse's suggestion the doctor okayed reduction of the amount of additional fluids administered in between the meds, which reduced the total amount of time we spent at the infusion center.  We got to go home around mid-afternoon instead of at rush hour (such as it is in Cleveland…).   :-> Thursday evening we went dancing again, and had another short but pleasant outing—some waltz, foxtrot, and tango, and chatting with good friends.  Friday Steve felt somewhat tired, but he thought not quite so much so as last Friday.  So, conditioning and pacing may be improving as well.

We seem to have a quiet weekend ahead.  I have plenty of school and home projects to work on, but all can be handled on a flexible schedule.

Ongoing thanks to everyone who continues to send responses and good wishes.  We appreciate every one of those messages and all of your supportive thoughts and prayers.

Wishing a good weekend to all of you,

Carol (and Steve)