What follows is the story of Dad’s
illness and death, presented as a series of email updates sent out when it was
all occurring in the Spring and Summer of 2008.
My dad got admitted to hospital on Saturday
afternoon (the 3rd of May; Nancy & I had been in
They reversed his anti-coagulation, gave him 5 units of blood, and pushed fluids; and within 24 hrs. his Hgb was 9.1, and he was stabilized, and the crisis had passed.
They did a CAT scan w/contrast, an EGD, and many other tests (including a biopsy of a gastric mass that had looked suspicious on the original CAT scan they had done).
On Thursday, after a consult with the hospital's tumor board, the pathology report came back with the conclusion that he has a large primary gastric tumor, invasive differentiated adenocarcinoma. I've seen the second CAT scan (REALLY scary-looking): shows >20 significant liver metastases, some palpable from the surface of his abdomen. Which is to say, as suspected, my Dad's condition is simply not treatable.
Nancy, my Mom, and I spent the day with him Thursday, and, with the help of the head of Critical Care Medicine at the hospital (Dr. Matt McCambridge, an extremely, bright, caring, and sensitive guy who was totally amazing), we told him the facts of the situation. Dad took it amazingly well; he is such an impressively strong guy...so courageous. And my Mom was amazing: strong, loving, supportive...although she is really having a terrible time underneath it all.
On Friday morning Dad had a consult with the head of medical oncology at the hospital, and he confirmed both the diagnosis and prognosis.
So his two choices were either palliative chemotherapy (no chance of cure; no greatly significant difference in amount of time it would add; and some discomfort from the treatment--although it would not be particularly toxic) or home hospice care (going back to their apartment, with the hospice people providing anything he needs as he starts to need stuff). Dad was very clear right from the start that he wanted the latter. (This sort of decision absolutely has to be a person's own, of course--and we left it completely up to him; and whatever a person wants in this regard has to be respected; but it is clear to us, and all my medical friends wholeheartedly agree, that he made a very wise choice.)
The drs at the hospital who were in charge of his care at that point (people from Dr. David Caccese’s group, a practice who know him quite well, and vice-versa) kept him in hospital for a couple of days, basically to get him back up and moving around, get his bowels functioning, etc., so he'd be ready to go back to his apartment and receive hospice care there.
The great thing is that he has not been in any significant pain from all of this.
Alex and Jane came with us to visit on 10 May
Saturday. Dad was eager to get out of the hospital, and he was discharged
mid-afternoon. We then brought him home to their place in
The hospital set him up with their home hospice care people, who will came to visit starting Monday. We'll have to figure out how much help my Mom will need taking care of him...and that is likely to be a moving target; but we'll arrange whatever is necessary.
He returned to the apartment with my Mom on 10 May Saturday.
It was quite impressive to watch the case manager and Dr Lambert (from Dr Caccse’s group) at Lehigh Valley Hospital set up his discharge: my Mom, Nancy, Alex, Jane, and I had arrived at the hospital around Noon; they spoke to us to confirm that he indeed had settled on home Hospice care, discussed with my Mom whether she was comfortable with that, determined that he’d need a hospital bed and walker at home, and by 3 PM had arranged everything and he was discharged. Before we left the hospital, we had his discharge meds (serious pain medication and sleeping medication for whenever he needed them), the hospital had arranged things with the Hospice people, and they had ordered his supplies for the apartment. We had him home before 4:00, and by 5:00 his bed and walker had arrived and were set up. Pretty amazing—and on a Saturday afternoon!
He has settled in, and my Mom is busy cooking and baking for him….which makes her happy. Obviously, her somewhat shaky physical state (more from hip broken hip of a couple of years ago than anything else) means that she has neither the strength nor the balance to assist him physically—she certainly can’t catch him if he starts to fall, and there is a limit to how much she can help him up. So she will require backup for that sort of stuff, particularly as my Dad becomes physically weaker.
A nurse and a social worker from Hospice came and spent a few hours with them on Monday, doing an evaluation and arranging care and services. At the moment they have arranged three weekly visits from a health care aide (to help him with showering and other physical needs) and two from the nurse. This all is subject to increase and alteration as his needs change. I think it was very calming and reassuring for my parents to speak with them—and particularly comforting to my Mom.
For those of you who do not know, my parents have been
living for a year and a half in
He continues to be able to get around the apartment, although he is quite tired and weak and sleeping a fair amount. He was busy paying bills on Tuesday. He continues not to have any significant pain, which is definitely a blessing.
Nancy and I were out there to visit on 15 May Thursday. The Hospice nurse and aide had been there earlier, helped him shower, shave, etc. (They are both—by my Mom’s report—quite attractive young women; and my father apparently enjoyed enormously their ministering to him.) He was asleep for a couple of hours after we arrived, which gave us some nice time with my Mom. She was very tired, but in good spirits. Once Dad was awake, he walked into the living room to join us. He looked great, and he was moving better than when he first got home—with a walker, but with a lot of assurance. (It was very good to see.) His spirits were good, and he continues to be upbeat and positive, although fully aware of the nature of his condition and prognosis. Nancy and I cooked dinner for them, His appetite was great, and he seemed completely to enjoy the fresh fillet of wild king salmon we had brought him from Citarella.
Alex and I went out for a visit in the morning of 18 May Saturday. Susie was there the next day.
So....so far, so good.
It is all so achingly sad...but the wonderful counterpoint to the whole thing is that my parents were here for our Seder and had an absolutely wonderful time, followed by a day that included lunch at Via Quadronno and house seats for South Pacific--all of which they enjoyed immensely. More importantly, the way they are dealing with this is absolutely uplifting to be a part of. They are both being incredibly strong, direct, and loving about the whole thing. They are such impressive, wonderful people. (I am very lucky...even in this)
Here is a picture of my Mom and Dad as he was discharged from the hospital Saturday afternoon (she is in a wheel chair only because Lehigh Valley Hospital’s Cedar Crest campus in Allentown, PA, is so vast that his room was literally hundreds of yards in one direction from the main entrance lobby [and the facility extends in every direction] and she is not mobile enough for those kinds of distances):
UPDATES:
UPDATE - 26 May Sunday
Things are continuing along.
My Dad’s spirits remain excellent, and my Mom continues to do wonderfully caring for him. The people from Hospice have been uniformly great.
On a visit there on 25 May Sunday, he was at the breakfast table when we arrived. In addition to whatever else he had already eaten, he had a toasted bialey with the belly lox and cream cheese we had brought from Zabar’s. Later he had a corned beef on rye with the supplies that we had also brought from Zabar’s…so his appetite is amazingly good. He gets around the apartment with a walker, and basically is only in bed to sleep and nap—although the periods that he is either sleeping or napping are increasing. It was a beautiful morning, and we enticed my Mom and him (it was only she who required the enticing—he was immediately game) out onto their balcony to sit in the sun for an hour. It is hard to hope for better on this count.
Dad has now started taking pain medication intermittently during the day and regularly at night. (He is currently managing any pain using hydrocodone APAP 5/500 [Vicodin] at night and when needed during the day; but he has plenty of backup for more persistent or worse pain [OxyContin 10 mgs] or acute pain emergencies [liquid morphine]…neither of which he has needed to use.) He is also getting progressively weaker and more tired. (The pain is from his gastric tumor; the tiredness is from G-I bleeding; for whatever reason, his liver is not causing him to feel sick, as witnessed by his appetite.) Nevertheless, there are still stretches when he is pain-free, and he is enjoying the visits from me and Nancy and Alex and Jane, and from Susie and Andy and Jonathan. He is complete alert at these times, and his terrific sense of humor is fully functioning, along with his other intellectual faculties. He continues to be inspiration in the way he is dealing with his situation: he is upbeat, interested in what is going on in other people’s lives, and very socially interactive.
I have to ask that people do not telephone them, however, as they are both often tired enough that phone calls can be burdensome. But they certainly enjoy cards and notes.
Please feel free to email me (dparrot@RLRubens.com ) if you have any questions.
UPDATE – 1 June Sunday
Nancy and I were there on 1 June Sunday, and conditions remain pretty much the same: my Dad’s spirits remain excellent—although he does continue to get weaker and more tired; and my Mom continues to do wonderfully caring for him—although she, too, is showing signs of wear. The people from Hospice continue to be great.
Dad is currently managing any pain using only hydrocodone APAP 5/500 [Vicodin], typically one at bedtime (along with an Ambien to help him get to sleep) and another if he wakes up during the night, and usually one at some point during the day—usually before he goes to sleep in the afternoon. But he is sleeping more. Nevertheless, there are still stretches when he is pain-free.
Susie and Andy and Jonathan, and Nancy and Alex and I continue to make carefully timed visits. He is able to be relaxed with his core family, and so these visits work for him, since they are carefully timed and attuned to his schedule. But seeing other people—even talking to people on the phone—is a tremendous strain on him: it means that he has to summon up the energy to be there for them, and, as much as he appreciates knowing that people care and are thinking about him, he really does not want people asking to visit or speak to him on the phone. With us he feels completely free to just go off to bed if we’re there or not to speak to us on the phone if we call and he is not feeling like talking; also we can cook and clean and take care of their needs for them in a way that they will not easily accept from others. As much as Dad very much cares about and appreciates the other people who have been—and continue to be—so important to him in his life, it is just much harder for him to be social now. In our most recent visit, he repeatedly asked me to try to convey this to all those of you who care so much about him: he wants you to know that he appreciates your love and caring, but that he just doesn’t have the energy for calls and visits. Also, it puts a considerable strain on my Mom, who really does not know how to have people around and not cook for them and take care of them—and she needs to save this energy for the already gargantuan task of taking care of him.
Dad actually very much likes and enjoys getting cards and
brief letters, so this is clearly the very best way to express your love and
caring to him. (Again, their address is
So, please feel free to write to him, but please do not call and do not ask to visit.
Please email me (dparrot@RLRubens.com ) if I can be of any help.
Update – 14 June Saturday
Yesterday was my parents 65th anniversary, and they celebrated it with joy and appreciation. When I called yesterday evening, they were drinking champagne with Susie and Andy.
Everything continues pretty much the same.
My Dad continues to be positive and in good spirits. He is sleeping well, and he is managing his pain using only Vicodin, which does take increasingly, but not continuously. He still gets out of bed when he’s awake, goes to the table for meals (and still has a good appetite—he is enjoying his bialy, cream cheese, and lox for breakfast every day, corned beef sandwich for lunch, and a variety of things for dinner—when we’re cooking he requests filet mignon), and sits in the living room the rest of the time—especially for cocktails! He and my Mom have been sitting out on their balcony for an hour when the weather has been nice, which they have both been enjoying. He is showing signs of some progressive loss of hemoglobin from his internal bleeding (although the loss is much slower than it had been before his hospital admission on 3 May, back when he had been anti-coagulated on Coumadin), and he continues to get progressively weaker and needs to sleep more of the time.
Mom is hanging in there, although she is quite tired from
the strain of all this. She has actually
gotten out of the house a few times, which has been extremely good for
her. I took her outside for a walk this
past Thursday afternoon because it was so beautiful out and
While Dad is in a good mood, he is reflecting at times on the realities of his situation and its sadness. When he learned that his old friend and handball partner Gerry Mantell was looking into taking an apartment in the retirement community where he and Mom live, he was very excited about it—until he remembered that, “I guess I won’t be here by the time that happens.” He has been talking openly and appropriately about such things, although he is not dwelling on them. Mom’s sadness breaks through at times like these. We have tried to make her feel comfortable with her need to cry at such moments and with the notion that her sadness and crying about it is a good thing. The majority of the time she remains in a positive frame of mind befitting Dad’s own state of mind.
They continue to deal with all this in a most amazing and inspirational way, and it makes it wonderful spending this time with them. It is all so sad, however…
Alex, Nancy, and I go out there tomorrow for a Fathers Day visit.
Update – 21 June Saturday
On 18 June Wednesday evening into Thursday morning, my Dad began having difficulty managing his pain using only the Vicodin he had been relying on. He had a rather sleepless night because of the pain. At Noon on Thursday, he Hospice nurse started him on 10 mgs of OxyContin, twice a day. By the time we saw him late Thursday afternoon, he had had a few good hours of a nap, and was feeling much better. His spirits had returned to their former wonderful level, his appetite was back (he has developed an intense fondness for Opera Cake, BTW—particularly following filet mignon!), and he was quite pain free. He slept well on Thursday night. As of this evening, his pain is completely under control at this dosage of OxyContin. (And he knows that he can add Vicodin on top of it should he require extra pain relief.) We are going to visit again tomorrow (Sunday) morning.
I though you might enjoy a photo Alex took of the two of them last Sunday:
Update – 4 July Friday
Sorry for the Update hiatus…I think everyone ought to assume that “no news is good news,” as I shall certainly let everyone know about any important developments ASAP.
While there have been a couple of rocky moments, Dad continues to do very well. He was doing wonderfully well on his regimen of 10 mgs of OxyContin twice a day (which he had been on since 19 June Thursday). In the middle of last week, however, he had had a night when he had had a lot of trouble sleeping (although he had not been in pain during the night), which was very frustrating and left him exhausted the next day; but we increased the dosage of his Ambien at bedtime, and, when we visited on 26 June Thursday, he reported he was having the best day since all of this had begun: he had had a great night’s sleep, was feeling refreshed, and, best of all, was completely pain free. The following couple of days, however, he began not feeling well in the late afternoons and evenings. The addition of one Vicodin when he took his postprandial afternoon nap seems completely to have done the trick; and all week now he has been feeling good throughout the day. He is eating well, in a good mood—and, while his color has actually gotten somewhat paler, it is hard to notice since he has a bit of a tan from sitting out on their balcony a few times recently. He and Mom have actually started to watch some old movies together on AMC—something which he had not had the motivation to do, although they had been watching the news together all along. (It is really quite amazing that he has retained his interest in what is going on in the world, and in the people in his life.)
Our visit on 3 July Thursday was longer than usual
(necessitated by our need to leave NYC early to avoid getting stuck in the
pre-holiday exodus), so we got to join them both with their corned beef
sandwiches at lunch and with their filet mignon (and the now-traditional Opera
Cake) at dinner.
Update – 13 July Sunday
Nothing much new to report, except a marked increase in his general weakness and tiredness over the course of this past week. His color was rather pale today (Sunday), too; and, despite his exuberant good mood, he quickly ran out of energy. I suppose this reflects new lows in his Hgb (hemoglobin). I reassured him that it was expectable and fine, and that he should just let himself nap more often and longer so he would feel his best when he was awake. He liked this and seemed to accept it: he even took a two-hour nap this morning while we were visiting (a first), and felt quite refreshed and ate a hearty lunch when he awakened. His mood was excellent today, his thinking was clear and focused, his appetite excellent, and—most important—he was essentially pain free. When I called this evening, he had awakened from his afternoon nap and was enjoying his dinner…after having solved the mystery of why their wireless phone wasn’t working! (A problem caused by our fiddling this afternoon with their new cable DVR box…so you can see the guy is still firing on all technological cylinders!)
Dad understands that the progression of this slow weakening and loss of energy represents the best outcome for him ultimately: of all the ways he could exit this world, becoming progressively more sleepy and one day not waking up is an outcome that is appealing to him—especially given the alternatives. He also understands that the state this represents is the point he was at back at the beginning of May when he was admitted to the hospital. (He was admitted with a Hgb level of 4.4—which, for those of you who are not conversant in such lab values, is about as close to being dead as one gets: one does not really find living human beings with Hgb levels in the 3s.) So this is not so scary to him. He does not dwell on such matters, but he is able to think about them and discuss them when necessary. Again, he is SO inspiring.
Mom and I got to take a nice walk on Thursday while he was
taking his afternoon nap (and
Update – 20 July Sunday
This was a tough week.
It had become clear toward the beginning of the week that Dad’s pain was requiring a higher level of pain medication. Starting on 16 July Wednesday at bedtime, he began taking 20mgs of OxyContin twice a day. When we visited him on Thursday, he reported having had the best night’s sleep that night that he had in years, and the next day was great, too. On that Friday, however, he began having some discomfort. Saturday was a bad day: although his morning was OK, he had a bad pain episode that evening. Shortly thereafter, it subsided, and within the hour he was comfortably able to go to sleep and have a good night. Today (Sunday) he had a good day, although he had to take several Vicodin during the course of the day to make that happen.
It seems clear that his pain problem is increasing. Doubling his OxyContin worked successfully, but held him for less than three days. He is starting to have some occasional mild to moderate break-through pain, even in the middle of his medication cycle; but his greatest pain vulnerability is at the end of each 12 hour period of his time-release OxyContin—and, understandably, especially at the end of the daytime half of that cycle. All seems like it can be managed for the time being by supplementing his OxyContin with Vicodin when he needs, and he is able to be comfortable. I suggested today that he take a Vicodin before and after his afternoon nap; and this seemed quite successful: he remained pain free right up through bedtime. I am going to suggest that he do that on a regular basis going forward. But it is also clear that managing his pain is going to require increasingly aggressive measures. We have reassured him that he will not have to be in any significant pain.
It is also strikingly clear that he is beginning to lose blood more quickly. There have been very marked changes this week in his energy level, strength, and color. He is now much shakier on his feet, needs to sleep much more, and is beginning to lack the vitality he has been able to show up to now.
So it appears to be turning into a foot race to see which end of the problem progresses more quickly: whether the pain—which is being caused by the obvious growth in his gastric tumor—moves more or less quickly than the blood loss. We are all hoping that the latter wins out, as that is a much more acceptable, humane outcome.
Sad Update – 23 July Wednesday
My Dad passed away last night. He died peacefully, in his sleep. We had a lovely visit, he was happy to see us. He was extremely weak, but in good spirits. Susie, my Mom, and I all wished him a good night, tucked him in, and exchanged happy good night kisses. We looked in on him later, and he was sleeping peacefully. A couple of hours later when we checked in on him before leaving, we discovered he had died. So ends his journey...
Mom has come back with me to NYC for the moment. We
are planning to have a memorial service for him--probably this Sunday around
noon, probably in
Obituary
(with a lovely picture at the end of my parents on their 50th anniversary--15 years ago)
GUSTAVE A. RUBENS
Gustave A. Rubens, 86, of
Gus was born in
He was an early manager at Air Products, having joined the
company in 1949. Gus moved his young
family to
Gus and Edythe were members of Congregation Keneseth
Gus was also an active member of the Jewish Community Center of Allentown since 1955. For decades he played handball there, mostly as part of a foursome with Gerry Mantell, Steve Luchanski, and Bernie Smith. When the latter two of the foursome passed away, Gerry and Gus played singles. Gus went on to become an avid tennis player—a sport he continued to play until last year. Gus won the JCC Senior Fitness Award Trophy for the year 2000.
Gus is survived by his wife Edythe Rubens, his daughter Susan Markowitz, his son Richard Rubens, his grandchildren Jonathan Markowitz and Alexander Rubens, and his son-in-law Andrew Markowitz and daughter-in-law Nancy Rubens, and his brother Roger Rubens.
There will be a memorial service on 27 July Sunday, at Noon,
at Congregation Keneseth
Donations may be made in Gus’s memory to
Epilogue
After a beautiful Memorial service for my Dad on Sunday, we
spent the rest of the week in NYC with my Mom, and, yesterday (Thursday) Mom,
Nancy, and I drove up to Wellfleet (on
If you want to reach Mom, the best way to do so is either to send a note to our address here (POB 1260, Wellfleet, MA 02667; but better not to mail anything here after 23 August Saturday), or to email her at my address (richard.rubens@RLRubens.com ), or to call on her cell phone (484.695.3151, where she'll be picking up here messages regularly; if you want her to call you back, please leave your phone number, as at the moment she does not have access to her address book with that information).
We all want to thank you again for the kind and loving cards, notes, messages, etc....they have been an enormous support.
--
"Hope lies in dreams, in imagination, and in the courage of those
who dare to make dreams into reality."
-Jonas Salk
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