another transition, another phase

So here we are, four days after deciding to transition to hospice care.  Melissa and Matt have been at the house these four days, and Dennis and Sharon for most of the time.  In addition we've had visits from everybody in our bridge group surrogate family, as well as from neighbors (Ken from next door on his regular Thursday morning visit, and Kristin from across the street to check in, having seen the hospice ambulance arrive at the house on Wednesday) and other friends. 

 

Wednesday was a full day, getting checked out of the observation unit, delivered back home, and set up with the hospital bed and other supplies and the hospice nurse who will be on our "team."  Thursday brought Dennis and Sharon's first day of visiting, as well as the recently-regular visits from Ken and Olivia. We also had a visit from our hospice social worker, who set up a nursing-assistant personal-care visit for Friday.  Friday, after the hospice visit Olivia came back to teach Melissa (and Sharon ;->) how she makes her healing chicken-matzo ball soup—a great experience in so many facets that I can't begin to explore them here.  Besides that, John and Liz came, and had a bowl of chicken soup and a nice visit with Steve.

 

Friday night, I decided to take over the night-time monitor from Matt, to test whether I would be able to handle on my own night-time calls from Steve (since his hospital bed is on a different level of the house from any of the bedrooms).  We had begun to realize that Matt needs to get back to his wife and baby pretty soon (to return when he can, probably in a couple of weeks), and Melissa also will be heading back home at least briefly to pick up loose ends before coming back to spend more time here.  From that experiment I learned that I'm not really up to doing this alone.  I emailed to Nora and Margie (my sisters) who blessedly and quickly agreed to come and stay with me while Melissa and Matt are away taking care of their other responsibilities. 

 

Today we had visits from Kristin (offering support from her own household and from the neighborhood at large) and from Clair and Grace.  Steve rested a lot but also very much enjoyed the two visits.  Dennis and Sharon spent the morning and early afternoon with us before heading home—a very difficult good-bye.  Tomorrow, Melissa will drive Matt to the airport for his flight back home.  In the afternoon we expect a visit from Melissa's school friend Shoma and the arrival of Margie to begin my sisters' support regime.  Monday, Melissa will leave us for a couple of days while Nora and Margie settle in to help me.

 

I think it must be apparent to the most casual reader that we have a phenomenal support network and so much to be grateful for.   Our hospice social worker suggested that Steve may actually have several additional weeks of reasonably high-quality time left, and we are aiming to make the most of them.  Thanks again to all of you for your ongoing interest and support.

 

starting hospice care at home

When Steve's pulse was high and blood pressure low yet again this morning, in addition to some other worrying  symptoms, I was not surprised that my call for advice yielded yet another instruction to head for the Emergency Room.  This time the preliminary tests suggested congestive heart failure, with a possibility of pulmonary embolism—the latter of which for various reasons it seemed impractical to explore further.

 

Oncologist and social worker came to our ER bed to confer with us, and the conclusion was that Steve is far too weak to qualify for any further chemotherapy.  We had sort of seen this coming, and before long had agreed that hospice care at home would be our best next step.  When Steve asked the oncologist if he could hazard a guess at what sort of time frame we should expect, the doctor said that though of course we never know for sure, he thought it would be good if the children came now. 

 

So, Melissa arrived around 7:20 and visited with me and Steve in the overnight-observation unit where he is staying until the hospice facilities can get set up here at the house tomorrow.  She will pick Matt up at the airport shortly, and Steve will come home tomorrow morning.  His brother Dennis will come tomorrow evening.  Then we'll see what happens next, and how soon.  And we'll let you know.

 

Thanks again for all of your support through this experience.    

complications--but still enjoying our visit

So, Friday morning we had cleared our schedule to get ready for airport pickup at mid-afternoon.  But unfortunately, Steve woke up feeling it was difficult to breathe in a satisfying way while lying in bed, even though the head of our bed is well elevated and he had three pillows to boot.  I called the infusion center for advice, and the nurse said shortness of breath is "really an ER issue," so off we went.  Huge thanks to Clair who took over the airport pickup on short notice

The ER folks did their tests and diagnosed pneumonia (in addition to the cancer metastasized to the lungs, and fluid surrounding them).  They infused antibiotics (as well as other fluids for dehydration) and sent us home with a seven-day follow-up antibiotic prescription and a home oxygen-pump setup.  We arrived just a few minutes before Clair's airport delivery of the kids, and later had an extensive delivery, installation and training visit from the oxygen suppliers.

We had a nice Saturday, and were set up for a Sunday-lunch visit from Margie and Ted.  Then our routine blood-pressure-and-pulse check showed pulse of 138—out of acceptable range, I seemed to remember.  So, we called the advice line (infusion center not open on Sundays) and after having me re-check to be sure the pulse reading was accurate (counting to the nurse's clock it came out even higher) the nurse consulted the on-duty doctor who said we really needed to come to ER again, because pulse that high created risk of cardiac arrest.  So, off we went again (Matt came with us this time)—so Margie and Ted had a lunch visit with Celeste and Dylan, which I understand was very nice and of course the rest of us were very sorry to miss it.

This time, the ER physician diagnosed Atrial Fibrillation and managed to correct  this episode of it with an infusion of a drug specific to that condition.  He said that given all the factors operating here, the best thing was for us to return home and let Steve be as comfortable as possible—which we can all agree would not happen in the overnight observation unit or in hospital.

So—when we got home Margie and Ted had left for a concert obligation, but there was still some lunch left for us.  ;-}  Now we're having a quiet evening at home (Steve resting in his chair).  Tomorrow M+C+D head back to Cambridge (airport limo courtesy of Clair again).  I have arranged with my supervisors and colleagues at school for an unbelievable amount of support and coverage.  And we will go forward (I seem to have said this before…) doing the best we can.

Thanks to all of you for your support.  We'll be getting in touch to arrange visits as we find ourselves able—but please don't take this as a request to stop offering to come.  We appreciate the offers, and hope to be able to take up all of them soon.


--Carol

some more good times, lots of rest in between

We did make the family-visit trip last weekend, and it was a wonderful experience. We got to see some relatives we haven't seen since this time last year (as well as some that we've seen a few times in between), and the flow of emotion and support was great. On the other hand, Steve arrived home quite exhausted.


On Monday evening, the bridge group relocated this month's gathering to our house to save us driving out, and we had a very good time. Again, though, so much of a good thing turned out to be quite tiring.


On Wednesday, we went to the infusion center and did qualify (via satisfactory blood tests) for this week's chemo dose. We don't know at this stage whether Steve's fatigue is due to the disease or the chemo or the combination of the two—but we're doing the best that we can. Steve is resting a lot between visits, and we both are looking eagerly forward to our long-weekend visit from Matt and Celeste and Dylan.


Thanks to all of you who have sent messages of support, via postal mail or email or other even more ethereal paths. To those who have said, "when can we visit?" we hope to reply soon after the above-mentioned long-weekend visit concludes. To all of you, thanks for keeping us on your radar.


Best wishes,



Carol

scaling back activity plans

This week brings little news beyond our slowing down and scaling down our October schedule.  The oncologist had Steve go in for a gastroscopy/colonoscopy on Monday, just to see what they could see.  The gastroenterologist reported finding nothing surprising—lower tract looked on the whole fairly normal, but in the upper tract the primary tumor (at the junction of esophagus and stomach) is present –large, circumferential and "friable," which  seems to mean "easily crumbled."  I didn't ask, but I'm guessing that means it's not just a scar tissue shrunken by the radiation treatments last winter, and that if it "crumbles" that's a way it spreads?  At any rate, that was the report.

 

We did go in for the chemotherapy on Wednesday, and after some saline and iron infusions (preliminary tests showed dehydration and anemia) the doctor asked Steve whether he wanted to go ahead with the chemo—which he did, so we did. 

 

Steve is still feeling weak and tired—probably somewhat more so than recently.  We are still going ahead with our family visit trip this weekend (at least I still think we are—it's 8 a.m. and we hope to leave around noon), but have canceled our other October travel plans.  The latter is disappointing, but realistically he concluded that those activities would take more strength than he can count on having at this point.  Matt and family will come here to see us next weekend; otherwise, we will pretty much be quietly at home. 

 

In hope of getting this weekend's trip underway, I will stop short here.  We will plan to keep you posted.  Thanks as always for your interest and support.  It continues to be much appreciated.

 

--Carol

good trip to Oregon, not-good CAT scan

To start out with the good stuff, just let me say that we had a very good time visiting with Eddie and his friends in Salem.  The trip was a bit of a stretch, but we are very glad to have done it.  Beautiful weather, and good visiting.

 

This morning, though, our oncologist had to let us know that the CAT scan results from last week show Steve's cancer has progressed on pretty much all fronts—lungs, lymph nodes, abdomen—and fluid in his lungs has increased.  We are disappointed, of course (to put it mildly), but have to admit it's not entirely a surprise because the energy bounce we had anticipated during the three weeks off chemo never came, but rather the reverse—less energy, more discomfort.

 

The doctor says we are getting near the end of the list of likely chemo regimens for this type of cancer (for which there are apparently fewer choices than for some other kinds).  There is one more to try, and we are trying it.  Present plan is for two cycles of three weekly doses with a week off in between, then another scan.  Meanwhile, the doctor will consult with his colleagues elsewhere to see if they have any ideas he hasn't thought of, or if there are any trials of new drugs for which we might be eligible. 

 

We hope to go ahead with most of the activities we have planned for the month of October, which involve quite a bit of traveling (mostly family visits).  We'll just have to take things as they come—which is always true, of course, but seems a more obtrusive realization now than it has before.

 

Thanks as always to all of you—our friends, "cheering section," "prayer warriors," and other well-wishers.  We continue to appreciate every encouraging vibration.

 

--Carol

Days of Awe

These are the Days of Awe.

 

Many of you know that on the Hebrew calendar the first day of the new year took place on Monday, the 17th (beginning at sundown of the evening before), and that the ten day period following, what we refer to as the Days of Awe, culminates on Wednesday, the 26th, with the Day of Atonement.  While I am not particularly religious or observant, I am nonetheless affected by what strike me as the ethical and moral issues that religious milestones measure, and in this case, at this time in particular, I am thinking about what fills me with awe.

 

In this ten day period we are supposed to be highly introspective, and use the opportunity for a serious review of how we spent the year that just ended and a contemplation of how we plan to spend the year that lies before us.  The standard greeting at this time is "May you be written down for a good year," reflecting the mystical belief that there is a book of fate into which all of our names, and all of our futures, are inscribed.  If we believe that literally, and if we believe that we are creatures endowed with free will, it is hard to imagine just what effect our behavior or the behavior of others will have on our futures.  But I don't think it does any harm to enter into a periodic review of the choices we make and the actions we take, and this is as good a time as any to conduct that review.  We are supposed to forgive debts owed to us, smooth over disputes we have with other people, and, essentially, enter the new year fresh.

 

For me the past year has been one where I believe I didn't have a great deal of choice, and if I did, I would not have chosen the year I have had.  Except for one important thing.  Because of my illness and my ongoing needs, I have come to learn how extensively goodness characterizes the people I have known--people I have known well or slightly, and people I hadn't known at all before.  From all corners I have received encouragement, assistance, generosity, affection, genuine concern, patience, and services.  My best friends have been like sentinels, ready to spring into action at the slightest indication that I needed something.  Friends of less intimacy have been no less generous; in fact, in some cases I have been left astonished at how faithfully I could count on some people I hadn't before known all that well or thought of as especially close.  But I was proven wrong over and over.  My family has been indescribable, and they have risen to the challenges with energy and devotion that are inspiring.  The medical people I work with, who could, if they wanted, see me as one more medical record number, are unfailingly positive and patient, and go out of their way to see to my comfort and well being.  The support group I attend is full of people like me, dealing with realities we never thought we'd have to face, but sensitive and responsive to the individual needs and conditions of the others in the group.  This one important thing, this newly found and consistently reinforced reminder of the essential goodness of so many people, is what fills me with awe at this particular time on the calendar as well as all the other weeks and months of the year.

 

I am approaching the first anniversary of my diagnosis.  I have come through it, so far, with a lot of success, but I know I have a long way to go.  I have several goals, some of which I have to admit to myself I will not see fulfilled.  But I am working again a little, writing some, playing my piano a bit now and then, reading voraciously (I couldn't read at all until around March, I think), dancing, playing bridge, and traveling.  Today I am going to fly across the country to visit my oldest childhood friend in Oregon.  I recently saw an old friend who expressed some genuine surprise that I was up and around, driving myself where I needed to go, looking less dire than I did when he last saw me in the winter.  All of that is good.  Tuesday was Dylan's second birthday, and when we called (not because he knew it was a special day, but because we did) and sang "happy birthday" over the phone, he very clearly said, with prompting from his parents, "Hi, g'amma.  Hi, g'ampa."  Someday I will hear him say "I love you, Grandpa," and some day I will read the paper on which he writes those words.  Goals worth striving for, and made all the more realistic by the outstanding care I am receiving from all the people I mentioned above.

 

So in these Days of Awe I reflect on the year that has passed and what I think lies ahead for me, and I conclude that with all your help and good wishes, I have no reason to doubt that where I want to go is where I will go.  If you, my friends and family and medical team, don't fill me with awe, I just don't know what will.