i would give you some violets ...

Dear friends -

On behalf of my mother, my brother, and myself, I -- we -- cannot thank you enough for your constant expressions of good will and support over the past year.  Your kind wishes sustained both our parents through Dad's diagnosis and treatment and struggle.  We really believe that without your thoughtfulness, he would not have survived as long as he did.

Dad had, as you know, come home from the hospital and begun hospice care last week, on Tuesday, 16 October.  By the second weekend at home in hospice he had become significantly weaker.  Friday night he was very restless; Saturday we began arrangements to move him to Hospice House on Sunday, when it became clear that even with help from family and friends, Mom wasn't going to be able to care for him at home by herself.  He did not protest this; his only question about moving to Hospice House was whether they had wi-fi there.  We know that was a signal that he accepted the necessity of that decision.  But Saturday night he was even more restless and very agitated, and we called a hospice nurse to help us make him more comfortable; and in the midst of proceedings to transfer him to Hospice House in the middle of the night rather than Sunday morning, Daddy passed away at 2:30am Sunday, 29 28 October.  We were with him, holding his hands and patting his head and telling him we loved him, and we are confident his departure was as peaceful and painless as it could possibly have been in the circumstances.

His memorial service will be two Saturdays from now, 10 November, 2012, at 6pm at the First Unitarian Church of Cleveland.  Please contact one of us if you need directions or further information.

Although this will be the last blog entry specifically relating to Dad's health and progress, we hope you will continue to tune in, as it is possible that after a period of adjustment to life without him, Mom may be back to post about her journey toward healing.  In the meantime, thank you so much again for your sustaining messages of love and encouragement.  They helped Dad during his treatment and they have helped us in the days since he's been gone.  Thank you, thank you, thank you.

best regards
melissa


... but they withered all when my father died.

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