Don’t Look Down

I’ve been trying to come up with a metaphor or image to describe how I’ve been feeling the last couple of weeks. The one that seems to sum things up the best is the classic scene in animated cartoons when a character runs too far off the cliff and is suspended in mid-air. There is that split second where they defy gravity. And then they look down and inevitably fall.

I’ve been asking myself, “Am I living with cancer or dying of cancer? Am I an optimist or a pessimist, is my life running to empty or does it have the right amount of fuel to keep going?”

Caitlyn, one of my stand partners in the Chautauqua Symphony, would tell you I’m an Eeyore. I am the first to admit that I expect the worst and I’m always pleasantly surprised when it doesn’t happen. No one knowing my family history should be surprised to hear me say this. But I am not a pessimist.

Often when people gasp after I’ve told them my sad story I try to kid them about the advantages of my situation. “If I wake up and get out of bed in the morning” I’ll tell them, “I’m doing better than all the other males in my family”. This is a very low bar and some might find it a very pessimistic statement. I personally find it life affirming. No matter how crappy I feel, how awful my circumstances, I am still here. I am alive and bad feelings are still better than no feelings. Life isn’t always easy but, I’ll choose life over the alternative every time.

This weekend Kristina and I went to Dallas. We went because months ago in October I registered for a Go Tournament held in the Big D. At that time nobody knew if I would be alive and able to attend. For those of you who don’t know the game of Go; it is an ancient Asian game played on a 19×19 grid with black and white “stones”. The rules are very simple but the game itself is very complex and requires much strategy (see for more info). I was very consistent and lost all my games. I found myself awake in the middle of the night berating myself for stupid moves and wondering why I even bothered to show up to the tournament. I eventually got back to sleep, woke up the next morning and realized that it didn’t matter whether I won or lost so long as I kept playing the game. Go itself has a philosophy to it that has much to do with yin and yang which is why I chose to persevere.

So, am I a pessimistic-optimist, an optimistic-pessimist? In the end it doesn’t really matter. What matters right now is seeing the wonder of this world while I am still here. To plan for the future the best I can knowing full well I will leave many things unresolved. To know that my time here is finite but not be fearful of the end. To love even when it hurts and to love the hurt as part of the whole. Hey, I haven’t looked down yet.


Sister Act

My sister Janet visited us this past week. She is eight years older than me and is the one person in this world who has known me all my life. After my death she will be the remaining repository of family lore. One of the reasons for writing this blog is to get some of those memories in a more permanent form. But this particular post is about the fun we’ve shared this past week.

Now that I’ve moved my chemo to Friday I’ve been able to perform more often. Janet arrived Saturday night to hear our concert. We played Schubert Great C Maj. Symphony. This was the culmination of a week with children’s concerts in the morning and rehearsals in the evening. It’s the most work I’ve done since I became sick and, while exhausted at the end, I was encouraged to know it was still possible to keep up such a busy schedule.

There was a reception after the concert that Kristina, Janet and I went to. This was the first time I had been in such a large public situation since my diagnosis. I often forget that I have a public persona as well as a private one. After living and performing here for thirty years I’m still surprised when people recognize me. I was humbled by the encouragement and support. Plus the food was great!

The telephone pole behind our house was replaced while Janet was here. She and I spent our time in various places during the couple hours we were without power. We went to a local Pho Restaurant for lunch. As we were getting ready to leave and pay for our meal our waiter came over and told us that our bill was already paid. We guess that some good samaritan had overheard our conversation about my situation and wanted to help. In Judaism the highest act of charity is one where the benefactor remains anonymous. We can’t thank them in person so I will thank them here. Janet and I won’t forget your random act of kindness.

Another place we spent time was my local library. Anybody who knows me know I am a bookworm. Libraries are one of my favorite places. In my peripatetic life I have spent time in libraries in just about every place I’ve lived or visited. This is my plug to keep these valuable institutions funded and growing. I am forever grateful that Shreveport supports its’ library system. Support your local library!

Spring weather is starting here. Afternoons are in the sixties and you can feel the tendrils of moist gulf air making their way into the atmosphere. Gus, our beagle mix dog, enjoyed his walks with us. One memorable walk was in the gardens behind the Norton Museum. Another example of a beautiful public space. I’m looking forward to the new bloom and growth this year.

One symptom of my cancer is difficulty keeping warm. I never had this problem before and find myself bundling up. Janet is all things knitted and textiles. She’s been knitting, sewing, weaving, spinning almost her entire life. What better way to say,”I love you” than an alpaca wool cap!

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While I love my cap this was the second best gift I received from Janet. To me the highlight of her visit was the evening she, Kristina and I spent playing cards. It wasn’t the card game that made the night special. It was the laughter. Janet and I have been through so much together and the fact that we can get together and bring ourselves to tears from laughing is probably the single most important survival technique we know. Some people might find it hard to laugh at the irony of our father saying throughout his life,”I need that like a hole in the head” and then dying of a self inflicted wound to his cranium. Or, from a Darwinian point of view, the Haas men seem to get the short end of the stick. But I, we need that letting go. That chance to face our worst moments, laugh at them and celebrate the fact that we are survivors. All I can say is,”My sister is no act, she is the real deal!”


I’m a sceptic of the paranormal. I don’t believe in ghosts. The haunting I’m thinking about is the feeling of loved ones gone and how their deaths affect us in our lives.

My family has a streak of depression and so I have several suicides in my family tree. I don’t wish to belabor the point because I feel that, although suicide is a tragedy, ultimately death is universal and we all must deal with it in one way or another. Even the most natural and painless of deaths at an advanced age has to be absorbed into our psyche and processed. The important thing is what we learn from loss and how we apply it to the time we have left.

When I was eight or nine years old my mother’s brother committed suicide. I remember playing on the floor and surreptitiously watching my mother as she cried. It was the first time I realized that there were circumstances beyond our control. Even adults could be blindsided by fate. How could it be that the people who care and provide for you, raise you, teach you, did not have complete control over their lives? I had no answers. Not even a way to ask the questions raised. It was a tremor of thought that shook my world. My first brush with death.

When I was twenty-two my father committed suicide. There had been other deaths of relatives between my uncle and father but, in the age old euphoria of youth, they seemed more pro forma, the natural course of things. My father’s death shook me to the core. He had health issues all his life combined with depression. His last years were spent battling a cancer that eventually resulted in the amputation of his arm. The onset of the disease was in my freshman year of high school and he died when I graduated college. It was doubly hard to watch this tragedy because of his depression. I remember sitting with him at the kitchen table and asking,”What would make you happy?” With tears in his and my eyes he told me he couldn’t think of anything. Now, beside the fact that mine was a rather arrogant question from a young person who presumably had his whole life in front of him, I hadn’t understood that one of the deepest tragedies of depression is the inability to find pleasure in life. In the years following his death I experienced similar bouts of depression and suicidal thoughts. I am not a depressive. The episodes with the “black dog” as Winston Churchill referred to it went away. One of the many blessings for which I am forever grateful. What I did learn was that life could end in the blink of an eye. Anyone could be here one second and gone the next so you better make the best life possible.

My brother killed himself when I was thirty-eight. He was seven years older than me. As a younger brother I idolized him. As the third suicide in my family everyone in the family could see what was going on. It was the cliche of watching a train wreck in slow motion. He left behind my two nephews, who were in high school, and my sister-in-law. The mixture of grief and rage after his demise was overwhelming. How could he hurt so many people? Once again his depression was part of the equation but did that explain everything? I had to learn true forgiveness. We humans are frail creatures with many foibles. We all have good points and bad points in our personalities. Death forces us to celebrate the good while accepting and forgiving the bad. I have learned to see the good and bad in other people and have tried to do the same for myself. Only by celebrating the good and accepting/forgiving the bad can we let go of grudges and arrogance. I’m still working on this. It is one of the hardest things I do.

My mother died when I was forty-seven. Not a suicide. I shouldn’t say her death was “easier”. It just lacked the hurt and drama of my brother and father. What stays with me was the actual death. My cousin, sister and I decided to “pull the plug” and we were there  when it happened. As my father-in-law said,”It’s a mystery. At one moment the heart is beating and someone is alive, in the next they are dead”. To actually see this happen gave me a profound intuition that death is not something to be feared. It is the inevitable result of living. In fact, we cheat ourselves of all life has to offer if we don’t allow ourselves to occasionally contemplate our death and the death of others.

So, where does that leave me in my present condition. Since I may have to decide I no longer want therapy to keep me alive is that a form of suicide? In our society we’re supposed to fight cancer and death tooth and nail. “Do not go gently into that night.” But death is inevitable. Is there a certain threshold when courage becomes foolhardiness? Luckily I don’t have to make this decision by myself. I think my friends and loved ones will help me make these decisions as my disease progresses.

I have had several people say I have a good attitude towards what’s happening. I fear that right now, while the therapy is working, it’s easy to do. I fear, as I have more pain, lose my dignity and depend on other people for my daily needs, this will be harder to maintain. It is a letting go that each of us as autonomous beings fear. However, I have hope that the haunted feelings I have dealt with during my life about death will continue to keep my perspective. I hope that they will help you, my reader, as well.


…And There Are the Good Days

I’ve been enjoying the comments I’ve received so far. A former student wrote “Personally I would like to hear not only about the disease itself or the bad things, but rather the good things, how your perception of things have changed for the better, how Eliot and Isaac are doing”. I had been thinking the same thought. After all, what is the point of this process if I’m not enjoying the life I have.

For various reasons which I will get into in later posts I have tried to live my life as if it were to end in the near future. I’m not the one to have a bucket list of adventure and travel that I need fulfilled. I have accomplished much that has made me happy. I have a loving wife and family. I have friends who are very dear to me. I have two wonderful sons who make me proud. I have been able to make my living as a professional musician. To me the secret of happiness is not in some far off goal or place but in the enjoyment of the mundane moments that occur while you are on the road to those goals.

Now that I’ve switched my chemo sessions to Fridays I am able to perform on the weekends. Last week I played some school concerts and got to share the fun with my younger son Eliot. “Peter and the Wolf” was one of the pieces. This is one of those early childhood seminal pieces that I love to this day. The fact that the main character shares my name might also have something to do with why it’s been important to me. Since this gig was an overnighter Eliot and I shared a lot of time together. This was a treasure worth more than any trip or goal.

I played Saturday night for a Rolling Stones Pops Concert. It felt good to be back on stage with my symphony friends. I really missed performing. Even if it’s not my favorite repertoire I still can’t believe how lucky I’ve been to make my living as a musician and I try to remind myself of that each time I’m on stage.

Thursday my older son Isaac is coming to town on his tour with “Cabaret”. I’ve been lucky enough to see him have success in musical theater. It’s hard to believe that the inexpierienced teenager we dumped off in New York City, telling him, “Here’s your opportunity, take it”, has come so far.

Unlike some of my earlier posts I don’t have a great concluding paragraph. Frankly I think that is appropriate. Feeling the sun on my face while I walk the dog, enjoying cooking a meal for the family are the wonderfully amazing mundane things that make a good day. As they say here in Louisiana,”The rest is lagniappe.


How Long do I Have?

Short answer: I don’t know. How long do you have?

After Kristina and I composed ourselves the doctor came back into the examination room. I asked, “How do you do this job?” He replied,”I consider my time with you as sacred. You can ask any questions you want. You can ask the same question a hundred times and I will do my best to answer it each time.” Of course we had questions.

I have urothelial carcinoma. The cancer started in the ureter of my left kidney, jumped to the lymph system and spread throughout my abdomen. It is aggressive. All the growth and spread probably happened in the two months before diagnosis. It occurs in less than 1% of the population. There is no test for it. My case was slightly unusual because the normal way it’s detected is blood in the urine not, as in my case, daily fevers.

There is no cure for urothelial cancer. The best that can be offered is palliative care to extend life. I would be on a nine week schedule. Two chemo therapy sessions spaced a week apart with the third week off. After three cycles of this three week regimen I would have a CT scan to see if and how much the cancer had been reduced. This would be my life for the rest of my life.

Within the week I underwent out patient surgery to have a port put in. The next day I had my first chemo. Time was of the essence. I’m about 5’5″ and normally weigh 145-150 pounds. By the time I had my first treatment I was down to 130 pounds and could hardly get off the couch, let alone eat. I was wasting away and could see the worry, dare I say terror, in Kristina’s face.

Home from my first treatment I had the chills. I was under three or four blankets and shivering. But, that was the last of the fevers. Over the next few weeks as I continued chemo therapy my appetite came back and I gained weight. The doctor was very encouraged. I was only slightly anemic and my white blood cell count was staying up. So long as I could deal with the nausea things were improving.

I had my CT scan in mid-December. The word used was “remarkable”. A word our doctor assured us he didn’t use lightly. All my lymph nodes were now normal size, many of the tumors had disappeared and the ones left had shrunk.

Where does that leave me? Eventually the cancer will grow immune to this therapy and will become aggressive again. There may be other therapies to try when that happens. But, since this is not a cure, I have to decide if the agony of chemo therapy is worth the good days. Eventually I will end up in hospice.

I call my situation the best part of a shit sandwich. Today I feel totally normal. I’m starting back to work. I have time to spend with family and friends. Yet my death is no longer a vague existential feeling but a palpable reality.

I read the book “When Breath Becomes Air”(CLSC)* before I had any idea that I too would become terminally ill.  The author, Dr. Paul Kalanithi, is diagnosed with terminal lung cancer just months before he is to finish  his training to become a brain surgeon. His oncologist tells him,”I’m not going to tell you how long you have to live. I don’t work that way because every patient is different”. My doctor has read the book as well and we are agreed that this is how we will proceed. Day to day. One chemo at a time.

So, how long do I have to live? I don’t know. How long do you have to live? Every day is a blessing.

*I belong to the Chautauqua Literary and Scientific Circle (CLSC). It is the oldest book club in America and has an enormous reading list. If you are interested in the CLSC you can find more information here.



What Happened

I have a wonderful Summer job playing bass with the Chautauqua Symphony Orchestra in upstate New York. Towards the end of the season last year I started developing some indigestion and low back pain that I chalked up to work and the excitement of ending the season.

When I finally got home the indigestion seemed to intensify, the back ache didn’t go away and on Labor day weekend I had a low grade fever and slept most of the weekend. I’m one of those lucky people who rarely gets sick and even if I do it’s just a cold. These symptoms continued and I eventually went to my doctor.

I felt like a hypochondriac. None of the symptoms were debilitating; not the indigestion, not the back ache, not the daily low grade fever. My doctor was perplexed as well. So she started some tests. After a blood test that came back normal she asked for an ultra-sound. After the ultra-sound I asked the technician if it was a boy or a girl? I also asked if I needed a blood test. I thought my doctor wanted one. They told me to wait. They’d send the ultra-sound to my doctor and if she needed blood drawn they’d take care of that as well. After a fifteen minute wait the techs told me my doctor wanted to see me right away. This is never a good sign in a medical situation.

That day was September 27 and my primary physician diagnosed cancer. She told me that the way the health system works it might take up to two weeks to get all the necessary tests done and hook me up with an oncologist. But, she was going to push the tests and make sure everything happened ASAP.

How do you feel when you hear the word cancer? Nowadays one knows of so many people overcoming this disease. I was scared. But I imagined a difficult process that would eventually end with my being cured.

On October 6 Kristina and I met with my oncologist. The cancer was stage 4. It’s inoperable and incurable. As the doctor discreetly left the room to allow us some moments to collect ourselves I burst into tears, turned to Kristina and said,”I didn’t do anything wrong”.

We live our lives as if we are in control of our destiny. Yet sickness, disease, disaster strikes randomly, unreasonably. We all know that intellectually. But, our first instincts in these situations is to try and find blame. In ourselves, in those around us. To think that we have a bargain. If we keep our heads low, exercise, eat right, follow the law we’ll avoid misfortune. And, if the bargain is broken it’s our fault. We must have done something because the universe could not be that cruel.

All we are really promised when we are born is that we will eventually die. What happens in between those two events is both wonderful, terrifying, beautiful and always inexplicable. It’s called the human condition. Embrace it in all its paradoxes.


Jarring Juxstapositions

Yesterday Kristina, Eliot and I went to the cemetery where I plan on being buried. Since my last chemo was more than a week ago I am feeling very good, totally normal. How to reconcile my present with my future? These kinds of mash ups are a constant in my present life.

One thing that helps is reading. I’m presently making my way through the Essays of Montaigne. I feel I am not only meeting a new friend but also gaining perspective on life in general. Montaigne is an examplar of a middle path. The good and the bad and the sweet spot between. I also find that some of my favorite parts of Judaism do the same. Everything in moderation.

Surely the comic and tragic are realigning and mixing in wild and crazy ways for me these days. Jokes like,”I can’t eat that. It’s carcinogenic!” are black humor, but humor none the less. Just like piquant sauces make food taste better my illness is not without its redeeming qualities. A perspective that can take in both the beauty and absurdity of life at the same time has kept me alive up till now. As long as I see both sides of this coin I am doing well.


Blog Title

The title of my Blog is a play on William Morris’ title “Well at the Words End”. One of the many books I have wanted to reread, having read it in my teens. What I remember from the book was its fairy tale atmosphere and the feeling that one was standing on the cusp of reality and eternity. I now know that, for me, the world will end. Probably in the near future. At least nearer than before my diagnosis. So, I too am standing at the precipice of reality and eternity.

And, sorry to be Cassandra like, so is anyone else reading this. I just happen to have a more concrete timeline than most.


Some Background

I was diagnosed with terminal cancer on Yom Kippur Eve, September 29, 2017. I turned 58 in November. I am married. My wife’s name is Kristina. My two sons, Isaac and Eliot, are in their early twenties. I am a professional, classical musician. I live in the southern United States. I am a Reform Jew. I am a voracious reader.

Enough background. Hopefully readers will gain a better sense of who I am as I progress through my disease.