Saturday, March 9, 2019

Funeral and Shiva for Stephen J. Ellmann


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Stephen J. Ellmann

Stephen Jonathan Ellmann, son of authors Richard and Mary Ellmann, was born on June 20, 1951 and died on March 8, 2019, surrounded by his loving family.  A distinguished author, educator, and advocate for social justice, Steve was an expert on the South African legal system during and after the apartheid era and a pioneer in the development of clinical legal theory studies.  Diagnosed with cholangiocarcinoma in 2015, Steve spent his remaining years writing a monumental biography of South African judge Arthur Chaskalson, a leading figure in the struggle against apartheid, which is soon to be published.  His legal career began in Atlanta, GA, where he served as Law Clerk to Hon. Elbert Tuttle, U.S. Court of Appeals, Fifth (now Eleventh) Circuit in 1976-77.  From 1977-83 he worked as staff attorney at the Southern Poverty Law Center in Montgomery, AL, where his practice included institutional reform litigation for mentally disabled people and prison inmates, voting rights cases, anti-Ku Klux Klan suits, and defense work in capital murder trials.  In 1983 he took up the position of Associate Professor of Law at Columbia University, where he founded the Clinical Theory Workshop in 1985.  He pursued his passion for legal pedagogy with a move in 1992 to New York Law School, where as Martin Professor of Law he has trained hundreds of future attorneys in legal ethics and in support of social justice. 

A long-term resident of Upper Montclair, NJ, Steve is survived by his beloved wife Teresa M. Delcorso Ellmann, his children Brian, David, and Nora Ellmann, and his sisters Maud and Lucy Ellmann, Brothers-in-law John Wilkinson and Todd McEwen, Daughters-in-law Karen Ellmann and Nevedha Rajan and Grandsons Patrick and Zac Ellmann.

Donations in Steve's memory can be made to the New York Law School Stephen J. Ellmann South Africa Judicial Fellows Program at www.nyls.edu/InMemoriam

Donations also may be sent to the program c/o New York Law School, Office of Institutional Advancement, 185 West Broadway, New York, NY 10013

Additionally, donations can be made to the Cholangiocarcinoma Foundation to support research and advocacy to find a cure for Cholangiocarcinoma.

We invite you to join us for Steve’s funeral on Monday, March 11, 2019 at 11:00 am at B’nai Keshet (99 South Fullerton Ave, Montclair, NJ).  A Jewish burial will then take place at Our Lady of the Magnificat Cemetery (2 Miller Road, Kinnelon, NJ) at 1pm.

The family will sit Shiva at their home on Monday, March 11 from 4:00 pm to 8:00 pm and Tuesday, March 12th from 2:00pm to 4:00pm and 6:30pm to 9:00pm.

For more information please visit: https://proutfuneralhome.com





Friday, March 8, 2019

Farewell My Love

Dear readers,

It is with great sadness that I write to share with you Steve passed away in the early morning hours on Friday, March 8, 2019.

Thank you for sharing in his journey with Cholangiocarcinoma.

We will post details about his funeral here, once they are available.


—his loving wife Teresa

Wednesday, March 6, 2019

One Final Post

Readers visit Steve’s blog to read his account of his journey with Cholangiocarcinoma.  During the past three years writing about his illness, so many of you have shared with him how meaningful, inspiring and uplifting his writing has been to you.  It gave him great joy to know that his writing held meaning for so many readers, especially those in the Cholangiocarcinoma community.  

Six weeks ago when he received his prognosis of six months, Steve planned many more posts that would explore deeply this next phase of his experience with the disease and his own mortality.

This post is written by his wife Teresa who is not as eloquent or articulate as Steve. And I am sad to report that there will be no more posts from our beloved Steve.  He is in the final days of his journey with us on earth.


We want his readers to know that he is at peace and is spending his final days surrounded by his beloved family.  Many of you have reached out and shared with him how special he is.  Thank you.  Knowing that our kind, loving, funny, intelligent and insightful Steve is treasured by so many people comforts us at this terrible time. Your love and support are carrying him and us through this final journey.

Friday, February 15, 2019

Another MSK Fragment: My Harris ... Chair???




Before I became ill I rarely had occasion to visit the homes of friends who were fighting cancer. So although I must have been in homes that had been rehabbed more or less substantially to make the patient’s life work more smoothly, I probably didn’t really focus on those features as part of my friends’ fight against cancer. Among the things I certainly missed were many changes in clothing; cancer changes your body, pretty much whether you want it to or not. With the benefit of more understanding of what I was seeing, however, here’s at least some of what I’ve noticed (leaving out the crucial, crucial contribution of one’s friends and family, and for me especially those of my dear wife Teresa):

Grab bars: Those shiny bars that may accompany toilets? Very helpful, and not just to provide something to grab on to, though that by itself is a big help. It turns out that in getting on and off a toilet, the exact number of inches above the ground that will give you the greatest leverage is very important. You can have all the strength you need, but not be able to bring it to bear – unless you have grab bars to provide you with intermediate help as you get up. (For similar reasons, other aspects of toilet design, including how far above the china bowl your actual seat rests, may turn out to be important too.) You may also want to acquire a bell – not the Victorian kind that you pick up and ring, perhaps embarrassing everyone in sight, but the modern kind with electronic links between the call buttons set up for you and your family so that when your grab bar saves you from some problem, someone will arrive to help!

A cane: I now have a cane, specifically my mother-in-law’s cane from a bout of illness mostly in the past. (Very generous of her.) I don’t actually need a cane; that is, I could get the leverage and support I need by other, cruder means, like leaning against the wall. But the cane, which has adjustable buttons, is more adaptable. It may also provide a new area for my emerging fashion sensibility (you remember the arrival of the Croc’s, right?); at any rate, my wife asked me if I preferred wood or metal, and a new cane will arrive as soon as tomorrow. and then of course there are the models with concealed weapons (all right, I admit my fighting days, which I don’t recall ever actually beginning, have now definitively ended). Fantasies aside, a cane is useful. Its only flaw as far as I’ve seen is that it is so useful that once you have one you use it readily and frequently, and in the process you do get slowed down. (I also have a great, five-foot-long walking stick that my son and his family gave me; it arrived before the recent medical pressures and in this post I was focused on medical interventions, but I very much appreciated it too.)

A staircase chairlift: This device, of course, anyone seeing it would recognize as a health care device. So I’m writing about it not to reveal its secrets but to celebrate its virtues. And they are many! The one we’ve rented really does exactly one thing but it does that one thing very straightforwardly: after installation by just one person, it proceeds to carry you up the stairs and down, again and again. No turns (though on a bigger staircase those would be necessary), but a discreet alarm that will catch the attention of someone else in the household so that if something didn’t work you wouldn’t be stranded midway up the stairs. A safety belt, which you could get away with not using, but why would you?

Now the fact is that I didn’t absolutely need a chairlift either. Using a combination of stepping sideways and adding to the leg force I could exert with a firm grip on the bannisters, I could and did make it up the stairs, and down was quite a bit easier. Especially going up, however, I was seriously winded for up to as much as half an hour. That was time I had better ways to use.  

So I’m really, really, happy with my staircase chairlift. I felt that under the circumstances, I needed to give it a name. But what name? Well, I felt the chairlift was doing work that’s typically done by men, but not exclusively so; and that the chairlift also reminded me of clothes I’m accustomed to wearing (but that women probably wear too). So its name is “Harris,” as in “Harris Tweed,” and when I want to change floors I tell the people with me that “Harris and I are going” up or down. And just to further mark his/her/its value to me, here is a picture of Harris [plus me], provided that Teresa’s technical skills enable us to post it.



And one question for all of you: if a lot of people started posting this picture along with funny remarks, would the picture count as a meme?


Friday, February 8, 2019

An MSK fragment



At various points in my treatment at Memorial Sloan Kettering, things have happened that shouldn’t just get forgotten. That doesn’t mean that I think all the important medical developments are over; I don’t think that at all, and we’re still vigorously looking for possible next steps that could alter my situation, and about which I look forward to blogging. But still, along the way, there’ve been some moments that deserve to be recalled for other reasons. I’m going to try to find some of these moments and make sure that they too have their place in the little history that the blog is meant to be. Let’s call them “fragments” from MSK.

So: I’ve just finished a 5-day course of radiation, meant to attack the tumor activity I’ve recently experienced. Needless to say, this is a high-tech business. With the help of almost 10 different staff members, plus the eery, powerful-looking radiation machines themselves, MSK carefully immobilized me as much as possible, aimed the radiation beams at particular spots marked out on my abdomen with tattoos, and monitored the success or failure of each image-taking venture.

My role in this was to be more or less naked. This was, sadly, not that exciting – but still members of that team of staff members (did I mention they were all attractive young women?) were always on the job, aiming the beams and, when necessary, moving parts of me out of the way so that each radiation burst could reach its destination. It was all pretty clinical. As to privacy, what privacy? For clothing, I was mostly reduced to a hospital gown that opened behind me, and lifted up for easy access as needed; even as an enlightened adult (I hope) I found this embarrassing, but a hospital gown opening in front of me would have presented essentially the same problems and called for the same responses.

None of that, however, is actually my point. My point is to ask this question: where were my clothes during all this? Weren’t they in some well-designed patient locker, suitable to accompany treatment designed and administered with such technological sophistication? Well, no. Why not? Because this particular part of MSK does not have well-designed patient lockers. The secret of good locker design has been found, but not applied here; in the midst of various buttons is a lock mechanism that does not, well, lock. Instead, the patient carries his or her belongings with a somewhat older technological tool, a large brown paper bag. I mean, really!

Monday, January 28, 2019

The complicated news from MSK as of the end of January 2019

The prologue:   

MSK gave me a prognosis for the first time, when we met with our oncologist on Thursday, January 24, 2019. The prognosis is six months.

The reasons:

I had been having difficulties. A scan back on December 11, 2018 had determined that my cancer was again in action. Shaping a response to that took time, both because of the holiday season and because I’m sure the doctors wanted to be as careful as possible. The conclusion they seemed to be coming to, even before we met on January 24, was that there were no good affirmative treatments likely to be available. We had no doubt this was a reasonable assessment of the situation, but felt that it might still be true that even a treatment unlikely to succeed was better than no treatment at all. Our oncologist’s view was, we thought, evolving to the opposite perspective: that if no treatment was likely to be successful then there was no point in trying them at all.

What decided the issue was a series of scans in late January, which included a January 15 X-ray of my abdomen as well as a CT scan, that same day, of my abdomen and pelvis done during my digestive blockage visit to MSK’s Urgent Care ward (a visit I blogged about as well). They also included an MRI of my pelvis on January 22. I had yet another scan on January 25, but that was to diagnose whether I had suffered a broken foot or not, and didn’t otherwise contribute to the study of my condition.

In truth, the information in theses scans is hard to keep clear and distinct. One scan is referred to as comparing its findings with data from a scan done a couple of days later, but I had no such additional scan that day. Another scan attributes the wrong disease to me – saying I have colon cancer when I actually have a different illness, cholangiocarcinoma. These mistakes are a bit unsettling, but the general import of the scan results nevertheless emerges clearly.

If the scans proved determinative, what led MSK to determine that they should do the scans in the first place? Their concerns were triggered in good part by the MSK physicians’ growing suspicion about a lesion, a damaged area, in my right iliac bone, which is part of the pelvis. MSK had been aware of this spot since approximately April 2018, but had not been particularly suspicious about it. Now, however, yet another scan in December 2018 had shown growth in this spot, and growth is important. For our part, we too had hoped not to need to pay attention to this spot. After all, I didn’t think I had any symptoms of it at all – but over the weekend before the scan I began to realize that maybe I did have symptoms, perhaps from walking further than was comfortable, perhaps from such minor motions as bending over to do the dishes. Mostly not a lot of pain – but cholangiocarcinoma is full of minor, yet ultimately meaningful, symptoms. Meanwhile, growth is cancer’s specialty, so the fact that this spot had recently started to grow was a bad sign.

The scan series in January 2019 appears to have confirmed two thoughts for our oncologist. The first is that the cancer has escaped from the liver and reached the bones as well. One report, on still another CT scan done on January 15, 2019, indicated this but not elaborately; a second, on an MRI scan done a week later, January 22, 2019, left no room for doubt. There has been a lot of damage to the bones of the pelvic area, presumably the result of its infiltration by the cancer, and all of it appears to have taken place in the last 12 months. Parts of the bone have probably died. All of this makes me vulnerable to things like bone fractures, including hip fractures, which would put me right away in a wheelchair.  

When the skeleton weakens, you are at greater risk both for “spontaneous” fractures, which can apparently take place while you’re doing nothing more strenuous than sleeping, and for fractures caused by impact and accident. There are things that can be done to reduce the chances of incident, such as installing assistive equipment, like guide bars, machinery to help me get around the house; as we do more with this I may blog about our progress, but in any case this effort is now underway.

As to the impact and accident fractures, for me those are more likely than they otherwise might be because of all the water I’m still retaining, especially in my feet. The water retention is another impact of my damaged liver (and of its interaction with the diuretic medication, and in turn with my kidneys). The water retention in itself isn’t a big problem, and doesn’t contribute to my underlying cancer in any direct way. However, in the Department of Irony, currently running strong, a couple of hours after we got home from our Thursday meeting last week with the oncologist, at which we’d received a lot of precautionary guidance, I fell at the bottom of our stairs. Fortunately the fall was only two steps down. I landed hard, but even more fortunately the fall didn’t fracture anything; it caused “just” a sprain. My left foot did take on some remarkable colors right away. Depending on how many separate sprains I gave myself, recovery could take as long as six or seven weeks. So far, however, things seem to be moving quite quickly and positively.

The second conclusion our oncologist and her colleagues have reached is that my liver has already been seriously damaged. One measure of such damage is the growth of the cancer itself, and the January 15 CT scan of my abdomen and pelvis lists a number of growing, and probably new, changes in my liver and bile duct of this sort. Other evidence comes from blood testing of liver function. My general sense is that my liver and kidney blood numbers were good until the conclusion of the high-intensity radiation treatment this past summer, and that at that point they began to deteriorate. It’s easy to see what caused the damage: not the water retention, but rather the combination of three years of different powerful treatments, including chemotherapy and, most recently, high-intensity radiation. These all did their job, staving off or pushing back the cancer for years – the oncologist has been happy to have me as an “outlier” to the normal course of the disease – but the price was liver damage. I’ve recently read that actually the liver handled over 500 different functions in the body, not just the 400 I’d seen referred to earlier. Any of those may now be malfunctioning.

What’s bad about liver damage is that there is no cure for it. It is possible for the liver to regenerate, but that is a slow process and one under nature’s guidance; there seems to be little if anything a doctor can do to bring about regeneration by direct medical intervention. There is no “liver-all” pill to take 3 times a day! The only method available to doctors of which I’m aware is resection – the complete surgical removal of part of the liver, but MSK has never seen me as a good candidate for this approach. That means that any heavy-duty treatment that gets applied at this point runs the risk of deepening my current liver problems, and if the liver stops functioning, that is really the end.

What is to be done next?

That in turn suggests that what’s ideal for me is to stick with exactly what I now have. The status quo has its inconveniences, such as water retention, but they can all be managed. Evidently, however, our oncologist anticipates a continued deterioration of the liver, presumably as a result of a continued growth of my cancer.

To stave that off as long as possible therefore becomes our next goal. Happily, there is something that can be done about this: the application of low-intensity radiation. High-intensity beams are too powerful and too dangerous, but low-intensity beams have been in use for a number of years and their capacity to slow, though not end, expansion of the cancer in the bones (and perhaps even in the liver itself – a point I want to ask more about) is evidently well-established.

One other point: I exaggerated a bit when I said that MSK took the view that there was nothing truly affirmative to be done. There is one treatment available which, though not very promising for patients with my kind of cancer (it wasn’t designed with this illness in mind), still could conceivably help and even help a lot: Keytruda. This is the drug that helped Jimmy Carter fight off brain cancer. MSK is comfortable with trying it because they feel they know very well what its potential downsides in the body are, and they’re mild. So they are quite confident that Keytruda won’t undermine what’s left of my liver functioning, and though it likely won’t improve matters either, it will succeed or fail without further weakening me.

The only problem with Keytruda is that it is very expensive – I think over $10,000 for each treatment, with the treatments every three weeks. Merck, which makes Keytruda, enables many potential patients to get around this problem by giving them access to the drug as a “compassionate use” under federal law; no doubt this is only partly an act of charity, while also serving as a way for Merck to continue gathering data on its drug, with a view to the widest possible use and sale of the medication. In any case, we and MSK have applied to receive the drug as a compassionate use. Decisionmaking at Merck this month has apparently been slow, for reasons no one outside the company is sure of, but we will continue to press the point.

There may be other possibilities, though with the difficulties my liver and kidneys now face I may not easily be able to qualify for most experimental trials. Even if I can qualify, we’ll have to determine whether these experiments make sense for me. For example, we’ve certainly considered the “CAR-T” experiment at the National Institutes of Health, a trial in which the patient’s immune system is more or less entirely removed, re-trained to focus on cholangiocarcinoma, and then returned to the patient’s body. The general sense Teresa and I have is that steps like these are a last resort, or no resort at all, because they do pose serious risks of danger to the patient – especially, we assume, one with a damaged liver already.

And meanwhile:

I plan to live the life I’ve lived, valuing and spending time with my family and friends. I also plan to continue the final steps in the work that I’ve had underway, the biography of my late South African friend Arthur Chaskalson, roughly since I received my diagnosis in 2015. I’ve often felt since I became ill that each day in itself is a wonderful thing. In recent months my sense of this has wobbled at times, so now I mean to remind myself, and to take joy in each remaining day. And if there turn out to be a lot of those remaining days, so much the better!