The River Appears*

It has been a difficult couple of weeks and I am behind in my writing.  Just after Christmas, I learned that the sixth treatment I’ve had in two years has not been working at all. My oncologist and I had a serious talk. “There are more treatments we have, mostly chemotherapy,” but he also warned me that with each one the likelihood of efficacy goes down – sometimes to as low as 5 or 10%–often with harsher side effects. The palliative care nurse was there as well and we discussed hospice. We agreed I would come back in a week after I had absorbed this, and would discuss next steps. He did not give me a prognosis in terms of time, but we agreed it is likely a few months.

By late the next week, I had developed a serious cough that by Saturday had me wheezing and spitting up blood. On Monday morning, the doctor took one look at me and my blood work, and wanted to admit me to stabilize this — if he could — as well as I give me blood transfusions (it turned out three altogether.)  So after a temporary stay in the clinical trials area, hooked up to oxygen, I was trundled off to the main hospital and admitted. To be honest, the doctor was not sure if I would even survive. His goal was to get me to the point where, with oxygen, blood,  and medication, I could go home and be met by hospice.

Within a day the wheezing had abated,  and my breathing had returned to almost normal with the oxygen machine, and I was discharged. They sent me home in the world’s most uncomfortable ambulance, but I was glad that Marty did not have to make the return trip to Boston and manage the oxygen tank, etc. The hospital wanted to be sure that oxygen was set up int he house before they would let me go, so it was early evening by the time I reached home.  I could barely walk.

 

Since then, I have had a parade of hospice workers in and out, including a nurse, a case manager, a home aid, and a social worker. Harry is here and along with Marty they are able to attend to most of my needs, so I will not need to draw on the hospice services for a while yet, other than for medication. It annoys me that I cannot be left alone, but that is for my safety, I guess.

 

So the last leg of my journey is underway.  Emotionally it is a bit tough to be in this place, but I’m also relieved by the fact that we won’t have to schedule our lives around trips to Boston, CT scans, and all the rest.

 

I have seen others share this news and get a variety of responses. It is not dissimilar to Elizabeth Kubler Ross’s four stages of grief: denial, anger, bargaining and finally acceptance. I think the person who must make their decision may often be  further along in that continuum than others who are hearing it for the first time.
river
For me, it is like trails on a path that eventually come to a river, and walking alongside the river for a while. Eventually you see a boat moored onto a small dock, and once you decide to get in the boat, you move away from the shore and begin to float down the river out to sea. You hope that it is a smooth ride, without any rapids or scary or painful spots, or places to get you tangled in the branches, or stuck on the rocks. In the early stages, it is too far and the river too winding to see the ocean at the end of the river, but I know it is coming. One thing is certain: the shore, with its pathways and treatments and byways is no longer really in my line of sight.

 

I use this analogy because the people standing on the shore often have a different perspective. Although they may say nothing to my face,some are not certain I got in the boat at the right time. “There is another boat later down the river — couldn’t you keep walking / getting treatments until you get to that boat?”   Some see another path on the shore I didn’t try; push for a second  (or in my case third) opinion, a trip to Germany for a special hyper-metabolic tank treatment that worked for a friend, Gerson dietary therapy — you name it. Others wail, “don’t give up, no doctor can predict the length of your life, keep having hope, the next thing might work.” Or that prayer, faith, or an angel in gossamer wings may manifest a miracle at some midnight hour — “radical remission”.  Some have some personal or family experience to fall back on, where perseverance, as they see it, faith, or something else made an individual difference, and desperately hope to transfer that to my situation.  Some simply cannot accept that this time, there  may be no fix, no suggestion, no other potential to  be tried that will change the natural flow of this river to the sea.  What I do know is that, as  I sit in my boat and drift with the current,  the words “don’t give up,” are not unlike hoping for the boat to capsize and for me to somehow find the strength to swim back to shore.  I would feel cold, wet, even more tired than I am, and stuck.

 

And then, there are others, standing silently in witness, holding space for me while walking along the shore as they keep me in sight, simply being present, offering prayer and peace.  It is recognizing the aloneness of the person in the boat in the river, without feeling the need to call them back to one’s own place of comfort — where there is solid ground, pathways, treatments, “battling” a disease, and what we consider normal in the medical environment. It is total acceptance of who the person is and what they have decided — whether it is a decision you would have made at that time for yourself or not. Some send cards of caring or calls, some bring chocolates – or fig newtons–offering comfort, peace, memories,  and even laughter. For even those facing death still like to laugh once in a while.  And perhaps, most important, It is recognizing that “despair” is not the opposite of “hope”.  Sometimes, it’s  acceptance.

 

There is a Jewish prayer called the mi’sheberach, often translated as “the one who blesses”. The prayer is recited whenever the Torah is read and names people by names. In English, the translation calls for a “healing of body and spirit”. In Hebrew, however, the words are a bit ambiguous — a “refuah sh’lemah“,  a healing of completeness. When we understand that the body and the spirit are intrinsically connected, it makes sense that it is impossible to know whether “a complete healing” means a recovery of bodily and/or spiritual health, or the unity of body and spirit in a new state. For those who stand by the shore in witness, watching a person’s journey to his or her life’s ending, the latter meaning may provide as much comfort to the prayer as to the intendee.

 

*with thanks to Harry for scribing this from my handwriting as I have developed neuropathy in some of my left fingers.

You Want It Darker

harry-thanksgiving-2016

Our son Harry, with whom we enjoyed a great Thanksgiving, has decided to make aliyah (for my non Jewish friends, this means exercising his right as a Jew under Israel’s “Law of Return” which permits Jews and those with partial Jewish heritage or married to a Jew, to emigrate to Israel and, in most cases, to gain citizenship).  His father, sister and I are all supportive of his decision, even though we know it will mean he is a 10 hour flight from Boston. In many ways, if I were his age and single, I might make a similar choice, especially given my experience already living out of the U.S.   In Harry’s own words, posted for his friends on Facebook,

Yes, this move was prompted by the election. I wish I had the fortitude to fight the next few years, to resist what promises to be a very ugly chapter of American history. But I don’t.  I simply can’t. This is not a reaction out of pain, but rather a response to how I can still move forward with the world as it is. I have much more to give, but would sink too deep here to pull anyone else up. I can only do my best to help humanity in whatever way I can from Haifa, and will be praying for all of you fighting for equality and our planet here in the US.

Harry’s decision and his leaving the United States for a new beginning, in an odd way, resonated with my own journey. A week or so before the election, as some of my readers already know, I learned that my fifth treatment in less than two years was not stopping the cancer in my liver. This was a clinical trial that had shown high promise—nearly 70% efficacy between keeping the disease stable and regression—so while my track record so far did not make it surprising that I was in the 30% for whom the treatment does not work, it was still disheartening. It took me a few days to wrap my head and heart around this, and to accept—again—that, in all likelihood, the window of time I have left on this earth is narrowing. Since ending the trial (I begin a new therapy later this week), I have also felt like a tire with a slow leak, some days feeling quite a bit of fatigue and weariness, along with a loss of appetite. I guessed, and my oncologist concurred, that most likely these symptoms are signs that the cancer is slowly but surely advancing.

In the midst of my processing all this came the U.S. presidential election. Like many—excepting most notably Michael Moore, who called it accurately some time ago– I was surprised by the outcome. I was also, and continue on a daily basis to be, disheartened not only by cabinet choices and continuing infantile statements, but also by the burgeoning incidences of hate and bigotry–now numbering more than 700 according to the Southern Poverty Law Center—that are occurring all across the country. The vast majority of these are committed by Trump supporters now greatly empowered by his inflammatory rhetoric during the campaign, and there seems no end in sight.  Some peaceful protests by anti-Trump forces have also turned violent or obstructive, and that is unfortunate, for it clearly detracts from the messages the protestors are trying to send.

In my opinion, we were already becoming unhealthy as a country with growing income inequality and the inordinate influence of big money in politics and public policy—a trend that surely reflected itself in the election.   Now, we can see that, ironically, this trend will almost certainly be accelerated, not reversed–not to mention ushering in a new era of divisiveness and cruelty, and the potentially devastating global impact of dialing back efforts to combat climate change that will affect our children and grandchildren.    There have certainly been periods in our history that have been ugly from a social and economic standpoint, but I think we are about to reach new lows, in virtually every area I can think of. Even with resistance, whether or not the country can recover from the damage about to be inflicted is an open question.   In some respects, this feels like the last gasp of a declining empire, a process that is advancing inexorably—and will likely gain speed– just as my cancer is.

I know this is a dark analysis, and not all will agree or feel they can afford to agree, either with my conclusion or my pessimism.  I hope I am wrong, and that my fears are overly colored by my personal situation —as Martin Luther King famously said, “the arc of the moral universe is long, but it bends toward justice.” And I can only pray that proves true, and that I can contribute through whatever small actions are in my power while I am still here.

One morning after the election, I awoke as I always do, with the awareness of my illness coming into focus (sleep, meditation, music and long talks with family or friends about something other than my disease are among my few respites from these thoughts.) On this morning, it was accompanied by a new emotion, one at first I didn’t recognize. Gradually I was able to identify it, and I have to say, I was somewhat horrified—it was relief. Relief that I would not have to bear the pain of watching this chapter unfold, relief that I would not have to watch the country continue to be torn apart by hatred and our institutions dismantled in the pursuit of profit and ever growing greed. Just as Harry has come to the conclusion that he can do more good in Haifa, perhaps, I thought—somewhat whimsically, to be sure– there is healing work to be done on the “Other Side,” and I will have a greater role there than I could have here. And perhaps, too, it is another way of managing the inevitable sadness of leaving this world and the people I love.

A day after the election, it was announced that Leonard Cohen, the great Canadian composer and poet, had died. About three weeks before his death, he released a new album, “You Want it Darker.” As I think about Harry’s upcoming journey—and my own—I reflect on how much the words of the album title song have multiple layers of meaning (in Hebrew, Hineni means, “Here I am” words spoken by Abraham, Moses, and Isaiah when they were called by G-d—a more spiritual meaning of readiness to take responsibility, rather than merely reporting physical location).

If you are the dealer, I’m out of the game

If you are the healer, it means I’m broken and lame

If thine is the glory then mine must be the shame

You want it darker

We kill the flame

Magnified, sanctified, be thy holy name

Vilified, crucified, in the human frame

A million candles burning for the help that never came

You want it darker

Hineni, hineni

I’m ready, my lord

There’s a lover in the story

But the story’s still the same

There’s a lullaby for suffering

And a paradox to blame

But it’s written in the scriptures

And it’s not some idle claim

You want it darker

We kill the flame

They’re lining up the prisoners

And the guards are taking aim

I struggled with some demons

They were middle class and tame

I didn’t know I had permission to murder and to maim

You want it darker

Hineni, hineni

I’m ready, my lord

Magnified, sanctified, be thy holy name

Vilified, crucified, in the human frame

A million candles burning for the love that never came

You want it darker

We kill the flame

If you are the dealer, let me out of the game

If you are the healer, I’m broken and lame

If thine is the glory, mine must be the shame

You want it darker

Hineni, hineni

Hineni, hineni

I’m ready, my lord

Hineni

Hineni, hineni

Hineni

Being and Not Being

sky-moonlight-nature-night-stars-clouds-rain-landscape-moonAs I have grown older and dealt with the death of close family members as well as some friends, it has struck me how differently people deal with the prospect of death—even though it’s something that comes to all of us.    There are those who die suddenly and/or tragically before their time, but among people who have a longer off ramp to the process, some “rage against the dying of the light,” some go in fear and even denial, and others let the tide go out gently. Some are willing to talk about it (clearly I’m in that category) and others are not.

Even though my family examples are mainly of those who lived long and full lives, their stories vary. My maternal grandmother, who once opined that “when people die, they just die,” did exactly that. After a short period of failing health when she was in her 90s, she was admitted to the hospital on a Thursday, and died that Sunday.    She also seemed unafraid to confront the prospect of death.  My mother and her sisters were in horror at one Sunday gathering when, as my arthritic paternal grandfather sat down with difficulty beside her, my grandmother asked him bluntly, “Now, Mr. Hennigar, how old are you going to be on your next birthday– if you live until then?”

My mother, on the other hand, lingered in a nursing home for nearly two years, wasting away.  In the years leading up to her death, I could tell that she was terrified—she did not want to speak of even the prospect of dying. My father, also in a nursing home in his last year of life, was much more accepting. About six weeks before his death, he took my hand in his and said simply, “Darling, I’m dying. I just can’t put anything in my body, any more.”    The day before he died, the distinct smell of macaroni and cheese—my favorite dish as a child—wafted through his room, even though it was mid -afternoon and nothing like it had been on the lunch menu that day. I took this as a sign that my mother had arrived and wanted me to feel her presence, as well. My dad went calmly and peacefully the following morning.

But perhaps the person from whom I learned the most was my paternal grandfather, who died when I was 29.  I had a very close relationship with him, and although two of my other grandparents had died when I was younger, I was at an age when my world construct had evolved to be open to the more spiritual aspects of life.

In his mid-80s, my grandfather developed a heart blockage, and we took him to the University of Michigan hospital for one of the very first pacemakers to be installed in a patient–-his surgery was even filmed by the U-M medical school.   In those days, pacemakers were clunky objects that protruded from the chest, and had to be replaced every few years. My grandfather lived to have two such replacements before dying from natural causes at 95.   The first replacement went well, but during surgery for the second, something went wrong, and my grandfather’s heart stopped during the procedure.

When he got out of the hospital, he seemed both excited and sobered.   It turned out that during the time his heart stopped, he had had an out of body or near death experience.   These were not well publicized at the time, as they are now. He wanted to talk about it. My parents seemed oddly dismissive, but I was fascinated. He described the things that many people who have had these experiences relate—a warm white light, a loving presence, the sense of other beings who had passed before him, an overwhelming peace. “I have lost any fear I had of death,” he pronounced. “If that is the place I am going, it is a wonderful place to be.”

A few years later, just weeks before he died, I visited him in the nursing home—I was home from Tokyo, Japan, where I was then living.   He was not able to speak much, but he kept talking about needing “to get around the corner.” Over the next few weeks, I had a series of dreams in which my grandfather was wandering in a black and white forest, just out of reach of a lush green area of trees and fields.   I could see the whole vista in the dream, but realized that he could not.   His physical condition continued to deteriorate and he lapsed into a coma.  On a mid-August Saturday morning in Tokyo, I woke with a violent start and sat up in bed. A few minutes later, the phone rang—my father was calling with the news that my grandfather had just died, almost at the exact moment that I awoke so suddenly.

In the weeks that followed, I had a few more dreams—in one, my grandfather’s eye was a vivid blue orb that pulsed a beautiful light.    At some point, the dreams stopped, and my own process of mourning my grandfather’s death moved along, as well. I have not thought of this time in many years, nor have I felt my grandfather’s presence as I did then, yet I realize that these memories form a kind of backbone in my construct of death.   Of course, from this side of the divide, there is nothing we can know for certain. But the famous words of Hamlet come to mind: “there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.”