A Fond Goodbye

Richard stopped treatment almost three weeks ago.  Weekly trips to Johns Hopkins in Baltimore had become so exhausting that they cost him more health and energy than they provided. With no other treatment possibilities left, he and Joan contacted Hospice of the Chesapeake, a local provider, to say he was ready for full hospice care, which they could deliver at home, avoiding any travel.  (He was already seeing them for palliative care.) Richard also called the social worker at Collington Life Care Community where he lived and asked to transition him to the community’s health center.  Within days he moved into the skilled nursing unit and Hospice reduced his medications to only palliative ones, put him on morphine, and got his pain and nausea under control.  Each day he became slowly less alert, and a week later largely stopped eating and drinking, something the body does when it is ready to go.  Richard was clear right up until his final hours when he could no longer speak that it was time for him to die, he was not in pain, and he was at peace with dying.  Family assured him that painful though it would be to lose him, they supported him in his decision to let go.

 

On Saturday, April 13 Richard quietly stopped breathing.

 

Richard wanted you to know that he was profoundly thankful to this group for the care and support it showed to him and has shown on behalf of the many individuals who lack access to justice in a number of ways.

 

No immediate funeral is scheduled. (Richard donated his body to Johns Hopkins for research.) We will be sure to let you know several weeks from now when a memorial service has been scheduled.

 

– Joan Zorza (his wife) & Arloc Sherman (his stepson)

 

P.S. No flowers (Joan’s asthma) but notes may be sent to Joan Zorza, 10450 Lottsford Road #5014, Bowie, MD 20721 or joan@zorza.net. Joan may not be able respond quickly.

Richard’s blogs will remain online throughout 2019.

 

Thank you

Richard thanks everyone for writing so lovingly and is greatly enjoying all the new messages.
-Arloc Sherman (step-son)

Maybe Moving Towards the End, I fear

It has been a few months of general decline, with current weight around 125lbs — and it gets harder and harder to update this site.

I am now in the long term care section of this wonderful retirement community.  I am not formally “in hospice,” but that is likely soon, with the key being when I decline to havestop transfusions, which seems likely.

The honest truth is that I find it harder and harder to find things to say — so you will have to rely on my past wisdom – such as it is.

Love to Joan, family, cherry blossoms, colleagues, etc.

p.s. I continue to welcome very short calls.

Feeling Better But Less Weight

It is a mixed message.

I am feeling better, but my weight has gone down, and while now stabilized, is not going up.

The big “feeling better” changes probably comes from the pain killing drugs I am now taking  The bad news, obviously, is that I am suffering leg and joint pain, but this is now largely controlled.  Indeed, I am now getting served by a palliative care program without being “in hospice.”  So to a certain extent I am now getting the best of both worlds.

And, now an occasional blog is getting written again!

I have hugely enjoyed various family visits.

 

Personal Updates

It is always easier for me to write these updates when I feel on a bit of an upswing.  After a tough time, now over a cold, and with two units of blood yesterday, I am feeling better.

The real problem is that I just do not want to eat (my weight is about 134 lb without clothes).  My stomach says eat, but my mouth refuses (see Cookie Monster on McNeil Lehrer, explaining in the Cookie Gate scandal that he always obeys orders from his stomach.)

Anyway, Joan and friends are scurrying around to get food and supplements recommended for me yesterday by my nutritionist.  In addition, as of this morning I am on a new drug that hopefully will boost my red cell production and/or shrink my significantly enlarged spleen — both of which will considerably reducing stress on my system.

I have to make clear that if none of this works in the next couple of months, I will be seriously considering steps that would put me in hospice.  The times of joy have been far too short, and the times of the opposite far too long. As always, the main problem is absolute exhaustion.  Once I stop blood, I should slip quietly away in a few weeks.

Family, friends and medical staff have been amazingly supportive of my process and my ultimate decision.  The mechanics are actually quite simple.  Once I stop blood transfusions, I immediately become hospice eligible — because I will have less than 6 months to live.  I might, at some point go into an appropriate room in the health center of our long term care facility, or I might stay in our home.  Many of you have heard me say that often when people say, “I want to die at home”, what they are really saying is that they want to stay in control, and they think, often rightly, that home is the only way to do that.  I am lucky to have absolute confidence that I and the family will stay in control to the end.

Thanks again to all who have been and continue to be, an incredible support.

 

 

 

 

Gaining Weight

The current strategy seems o be working.  I am actually gaining a little weight, and everyone says I look better.

Iam keeping at the lower red cell level, and chewing through less red cells than before.

I am back to being sleepy, and doing less, but I am happier, so staying with the change in strategy, but will try going back to Ritalin to wake me up.

I am particularly thankful to my oncologist who found the right and trusting way to tell me that I seemed to be feeling worse than my numbers suggested should be the case.  We then explored issues such as depression, diet, GI, and I took various small steps.  Anyway, well worth it.  What it means to have a provider who can be direct and honest, without blaming!

Thanks again to all for your support.

 

Update: A Bit Better and Stable

I have to admit that it is harder to write an update when things are not going to so well.  But I still promise that real bad news will be shared promptly, so silence, while not golden, is not really bad news.

So now, after a number of chemical attempts to reduce iron build up from transfusions, and to improve red cell production, I am now off those drugs, and feeling much better.

In fact, we are testing, with some apparent success, whether keeping me at a lower level of red cells will reduce my rate of red cell consumption.  It is pretty clear that my spleen is chewing up red cells, and that this may be proportional in some way to red cell level.  In addition is the quirky fact that the spleen can act as a supplemental producer of red cells.

So we are to transfuse me on a schedule that will keep me above 7.5 at all times.  This is the approximate level at which I experience angina. Last week, I was down only one  unit, or so, after having in the earlier phase consumed two units a week. So I go up to Hopkins once a week, and get one or two units.  Well worth the effort!

As to mood, while I am less energetic at this red cell level, I am more peaceful.  I think this is because when I have more red cells I feel more obligation to be productive — which I am now much more limited at.  My mood is also better because I am eating more.  I have gotten good advice from a GI doctor, and a drinking nutritional supplements, but most importantly, our community is opening a second dining facility that we like a lot.  They do a superb cooked-to-order pizza, for example.  (Menu here!)

Anyway, the absence of my blogs has caused people to worry and reach out to us — and that is a good thing.  I means a lot to stay in contact.  Keep doing so.

p.s., if you want to encourage me to blog more, then get people to subscribe to my blogs – listed here, at bottom.

Very best to all.