Down the Rabbit Hole

“Curiouser and curiouser”. Its been a long time since I’ve felt able to write. I left Chautauqua a week or so early because I could feel my health deteriorating at an increasing speed and wanted to get back to my doctor in Shreveport. It broke my heart to leave early but, in retrospect, it was the right thing to do. I have been quite ill for a long time since I made it back home.

But, first things first. The remainder of the Summer in Chautauqua after my previous post was wonderful. Lots of great concerts. So much support from my friends. I was gradually amping up my ibuprofen dosage but things were manageable. I was able to meet up with old family friends and thank them for their help when my father was very ill. During the worst of my illness I would recall all that happened this Summer and it would sustain me through the worst of my symptoms. However, I knew I was gradually slipping down the rabbit hole. So Isaac, Eliot and I quickly packed up the van and made the two day road trip back home.

From the time of my return till now the cancer came back full bore. In fact it grew a little more than when I was diagnosed a year ago. All my symptoms also returned. The pain, the fevers, the nausea all combined to make it impossible to get more than a mouthful or two of food. My stomach was clenched like a fist. For six weeks I lay on the couch and stared at the ceiling willing myself to just hang on a few moments more and get through it.

Dr. Patel here in Shreveport summed things up. I had had no effective treatment for four months. It’s no wonder things were bad. I have lost thirteen pounds and am just now starting to be able to eat consistently. The immunotherapy was ineffective and I am now on a different chemo drug. I had my second dose two weeks ago. The fevers are gone and, just like Alice, I seem to have made a soft landing after floating down the rabbit hole.

In some ways I was not surprised by my reaction after coming home. I never really thought about what would happen after the Summer. It seemed the last thing I would do in my life. Once Summer was over it would be about a year after my diagnosis which is about all most people get with my type of cancer. Kristina says I’m like a cat and this is the second of my nine lives. Maybe l’m like the Cheshire Cat and I will disappear slowly leaving just my smile behind?

I’m still quite weak and going out to a grocery store is enough to tire me out. But, I am starting to get out, visit with friends, gain a little pleasure from being alive. Only time will tell how effective my latest treatment is and how long it will last. We were having serious conversations amongst my family about whether or not it was time for hospice. Dr. Patel urged me not to give up and held out some hope with this new treatment. How odd that circumstances can change so quickly. But, that is life in Wonderland (Cancerland?)

For all of you who have reached out to see how I am doing and didn’t receive a reply, please forgive me. I be will getting back to you soon. Hopefully I’ll have plenty of time to do it. After all, it’s very hard to stay in touch when you’re slowly floating down a rabbit hole.


Adventures In Cancer Land or How I Caught Up On My Jello Quota

“Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else—if you run very fast for a long time, as we’ve been doing.”

“A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”

I remembered this quote from Alice in Wonderland and then saw it quoted in “The Emperor of All Maladies”, a book tracing the history of cancer that Kristina has been reading. Because we have been preparing for and then beginning our Summer travels I have not been able to write but, this quote has been prowling in the back of my mind.

We annually leave Shreveport for three months out of the year to Summer in New York State and having cancer added a new wrinkle to those preparations. I had to make arrangements with an oncologist and hospital in New York, send my records, etc. I had been calling my health insurance company in Baton Rouge trying to understand how all this worked. On my third call, as I received yet another equivocation to a straight forward question I asked in frustration,”Is there any way I can talk to someone in person?” Turns out the Shreveport office is quite close to where we live. I immediately went there and, without an appointment, made the arrangements for our trip. Part of the process was getting assigned a case worker and going through an interview with many questions. One of the questions was,”Do you feel hopeless.” I answered in the negative but immediately thought,”What does that question even mean anymore?”

Of course I am hopeless. All the doctors say it. But I don’t “feel” hopeless. Because no one can rule out a miracle.  Because I choose to accept death as a part of life. Because I’m lucky enough to not to go through this process by myself. Somehow I have been blessed with a psychic constitution that always seems to rise up from despair. Which, as I’ve said before, distinguishes me from my father and brother. I don’t know if I’m just lucky to have this ability or if I cultivated it in some way. However it came about next time I’m asked if I feel hopeless I’ll paraphrase John Maynard Keynes and say,”Well, if in the long run we’re all dead shouldn’t we all feel hopeless?”

Getting ready for our trip we hit our first snag. We planned to leave so we could arrive in Oberlin for Eliot’s college graduation. Unfortunately I came down with a cold which developed a fever. We went to an urgent care doctor who, as part of the diagnostic process, hooked me up to an EKG machine and found out I had atrial fibrillation. We went to the emergency room and I ended up in the hospital for two days.

I have never been hospitalized until now. It was an odd experience on many levels. I didn’t feel sick at all. Only a little disappointed that we would miss the graduation. It’s easy to poke fun of hospitals. Many comics have done routines about the absurd hospital procedures. Of course they woke me up to take a blood sample at three in the morning. Yes, I was suffering from a heart disorder and was served bacon and eggs for breakfast. I definitely caught up on my yearly Jello quota. But, perhaps the most absurd part, was constantly reminding my doctors that I had terminal cancer. One doctor actually said,”Oh, that’s good to know.” One of the cardiologists was telling me how he suffered from atrial fibrillation and the time between recurrences was several years. To which I replied, “Great, apparently I don’t have that long to live so we don’t have to worry about it.” We both got a good laugh over that one. Honestly, I received great care and it was better than having a major stroke while driving in the middle of rural Kentucky. But I was glad to get out so we could start our trip.

Isaac was able to attend Eliot’s graduation and then the two of them traveled up to Potsdam, New York where Kristina and I met them the next day. Potsdam is where Kristina grew up and her family still has a house surrounded by many acres of land. It’s in the St. Lawrence Valley not far from the Adirondack Mountains and, well….a picture is worth a thousand words.33854340_1731174400294102_2956663578284785664_n.jpg

Sure beats Louisiana in the Summertime!

We met with the new oncologist in Syracuse a few days after we arrived. To our surprise he told us he wanted to stop the chemo therapy and monitor my situation. This was the opposite of what Doctor Patel in Shreveport had been recommending. While we were still in Louisiana discussing going to another doctor in New York I asked who would take precedence. Dr. Patel said,”The doctor in New York would be the chef” , but we could call Louisiana anytime to talk to him if we had questions. The New York doctor’s reasoning was: since my last two CT Scans showed no change, the risk of more neuropathy and possibly hurting my kidneys out weighed the benefits of continuing chemo. Kristina and I were stunned. What was I going to say? “No. I insist we keep up with the chemo. I like lying on the couch being nauseous for days.” We called Dr. Patel and talked to him. And here’s what Kristina and I remembered about all of this. The doctors can only prolong my life. They can’t cure the cancer. We aren’t choosing life or death. We are choosing how I live my remaining days. Dr. Naqvi in Syracuse was offering a chance to enjoy our Summer. If, perhaps, it meant my life ending a few weeks earlier we were willing to make that bargain.

One of the reasons stopping chemo therapy was so enticing is that we spend two months of our Summer at the Chautauqua Institution where I perform with the Chautauqua Symphony Orchestra. The schedule is so hectic that if I continued with  chemo I wouldn’t be able to participate in all that goes on there. We were excited at the prospect until, around three weeks after we stopped therapy. My lower left back began to ache. It is a pain I had toward the end of last Summer that I now know was the onset of my cancer. I had another CT Scan and Dr. Naqvi confirmed the cancer was growing so this Friday I start immunotherapy. The good news is that immunotherapy won’t make me nauseous and it only takes an hour to administer as opposed to the all day affair I’ve been doing with chemo therapy. The bad news is this is the last arrow in the quiver.

So, I am running as fast as I can to stay in one place. I can’t run twice as fast to get somewhere and I honestly don’t want to. Kristina, Eliot, Isaac and I are all together. My sister-in-law Ginger and her family visited Chautauqua last week and my sister Janet and nephews Alex and Ben are visiting next week. Right now I’m celebrating the Fourth of July with Kristina’s family in Potsdam. If all goes well I might be able to stay the entire season in Chautauqua.

I’m thinking time is a strong wind. If I don’t run it will blow me backwards and I will live only in the past. If I try to run forward the effort will exhaust me and I will be living in a precarious, short lived future. Running to stay in one place is the spot where the sweetest part of life seems to be for me right now. It may sound absurd on the face of it but my life has been absurd since I was diagnosed. The more absurdity I embrace the more life I live. Feel free to put on some running shoes and join me. It’s scary and exhilarating at the same time!

BTW Happy Fourth of July everyone.


It’s been some time since my last post. I have received some very nice compliments from readers and am flattered that you find this blog worth reading. But, it can be difficult to write for several reasons. When I am feeling nauseous and recovering from a treatment writing is not top of my agenda. When I’m feeling good I want to enjoy life in as immediate a way as I can which doesn’t lend itself to introspection. I’m still feeling my way about what I want this blog to “be” which is probably not really something I need worry about.  Just putting thoughts on paper(?) is probably best. Many of my thoughts and emotions are explored in previous posts and I’m trying not to be redundant. Finally, I often have many opposing emotions and many ideas swirling around in my head at once and to tease out a coherent whole, or even a way to start, is daunting. Thank you all for bearing with me so far and I hope my posts will continue to be worthwhile to you.

Since our return from California I’ve been busy with performing as much as I can. Moving the chemos to Fridays has worked and I’ve been able to keep up with my symphony schedule. In Conservatory musicians are counseled to imagine every performance as their last. That may be a bit drastic but, I am certainly well aware of the fact that a piece I am playing could quite possibly be the last performance of that particular piece I will be a part of. Each piece calls forth a welter of memories of performances past. I played Brahms 4th Symphony and remember playing it as a student at Chautauqua under the baton of Nathan Gottschalk. I played “Carnival of the Animals” by Saint-Saen and think of all the school concert demonstrations I have done playing “The Elephant”. The pleasure of performing in front of an audience, the fact they have come to hear a live performance and I am part of it, is even more poignant now.

Kristina and I went to Oberlin to hear younger son Eliot’s Senior Cello Recital. We have watched him grow and mature as a musician from “Twinkles” to Britten 2nd Solo Cello Suite. In my predicament I never know if I will make the next event. So I try and savor each milestone, both large and small.

I have made plans to see an Oncologist in Syracuse, NY this Summer. Soon we will leave Shreveport for our annual trek up to Potsdam, Kristina’s hometown and Chautauqua. My good friend Ed tells me to keep my schedule so busy that when the Grim Reaper comes for me I’ll have to reschedule his appointment indefinitely. So far that seems to be working.

But, there is an undertow of sadness, worry and fear, how could there not? As I was working my way through my last treatment I wondered if this is the midway point. My last CT Scan was stable. Not bad, not good but the same. Of course the middle point can only be found in retrospect. Months down the road I will  be able to point to a certain period and realize it was the beginning of the end.

Samuel Johnson said, “A sentence to be hanged in a fortnight concentrates the mind wonderfully.” Thinking about this quote I realize that “concentrating” doesn’t necessarily mean wisdom. Some people who find out about my situation assume I have some direct link to wisdom because of my imminent demise. What wisdom I have developed has been a long and lengthy process. Many of my gains have been forced upon me by circumstances I wouldn’t wish on my worst enemy.

I sometimes joke that being a survivor of a family members suicide is like being nominated to a club you don’t want to join and then the person who nominated you embezzles the clubs money and skips town. You’re stuck with the aftermath and you have no way of getting out of it. My cancer has many of the same themes.

Sometimes I play a game called “Why Don’t They Get Cancer?” Envying healthy people is an emotion I only allow myself to indulge in in minuscule quantities and only as a joke. It is not an emotion that I am proud of but, if it makes me laugh at my fate I’ll take it. It’s that piece of chocolate you sneak when no one’s looking. It is a part of being in this club I don’t want to be in.

There has been a debate going on recently about cancer patients attitudes. Should we always pose it as a “fight” a “battle”? These words imply some way of “winning”. With the right strategy the cancer will be overcome. It also implies having control over ones fate. For someone like me who is receiving palliative care a realistic attitude, not bereft of hope but accepting the reality of the situation, seems better. I keep repeating to myself the wise words of a fellow cancer sufferer. “Cancer is a marathon, not a sprint.” (Interesting to note that marathon comes from the Battle of Marathon) In any event, talking to people about my health can be frustrating. I don’t resent some of the less tactful comments. No one wants to be reminded of their own death and talking to me people can’t help but be reminded. I choose to understand their discomfort. Once in awhile I give them a big hug and tell them,”It’ll be alright”.

The definition of turmoil is: a state of great disturbance, confusion, or uncertainty. I’d say that’s a pretty accurate summation of this post and my present state. But, seriously, what has changed since my diagnosis? With the exception of the great disturbance part I’m not sure I know anyone who’s life doesn’t have some measure of confusion and uncertainty. And I’ve had my share of great disturbances as well.

I will soon be traveling for the Summer. I have no idea how long my health will allow me to work. I can only go along day by day. I am already steeling myself  to say goodbye to friends and places that I will probably never see again, that I have loved and cherished more than I can ever express. But you see, I’m part of this club. So are you. We weren’t asked if we wanted to join but, I’d like to make a motion. Let’s not worry too much about the turmoil. Let’s make this the best club we can while we’re still members. Do I hear a second?

Death, Taxes and the Sweetness of Life

The inevitability of death and taxes has been repeated so many times as to become a cliche. With my present health status it was even more difficult than usual.

I have no reason to complain. I don’t do my own taxes. I pay someone to do them for me. I only have to organize the forms and find the pertinent information, which I have been saving in a folder throughout the year. Simple! Yet every January this sense of dread descends and I find myself procrastinating.

It is not politics or economics that create this abhorrence. I agree with Oliver Wendell Holmes Jr. that,”Taxes are what we pay for civilized society”. This is just an irrational fear. We all have inevitable chores that just have to get done. “Do it without liking it”, as my father said. But, combined with the other things going on in my life, I found myself at perhaps the lowest moment of my emotions since my diagnosis last year.

Sitting with Kristina I asked,”Is this it? These mundane tasks that never end? Chores I hate doing but have to get done? Why continue?”

As I said, “Irrational”. The taxes are done. It’s never as hard as I think it will be and it cleared the slate for Kris and I to go on our California trip.

Kris and I both have family in the Bay Area. Kris has a brother in Palo Alto and my sister Janet lives in Northern Marin. We began our trip in Palo Alto and stayed with my brother-in-law Matt and his wonderful family. Matt, Kris and I went on a day trip to Monterrey where we ate lunch on Cannery Row and then visited Tor House, the home of the poet Robinson Jeffers. The house is located on the bluff overlooking the ocean in Carmel by the Sea. The next day we traveled to Janet’s.

Janet had booked a B and B situated on a working cattle ranch in a beautiful green valley. It was idyllic. California is green for a short time of the year and we were fortunate to catch it at its most picturesque. My sister-in-law and her son also came out so we could all celebrate Passover and the First Seder together. Seven of us around the table celebrating the renewal of all good things. We spent the next day visiting some Red Woods and going out to Point Reyes to spend time on the beach.

We crossed the Golden Gate Bridge on our way back to Palo Alto in order to meet up with Kristina’s other brother who was visiting with his family. So much family, so many nieces and nephews. I was literally overwhelmed. I felt almost drowned in the sweetness of life and the future loss of family, friends, beauty, love. I had to take a solitary walk at sunset to let all the feelings flow in and out of me. To catch my breath. And, yes, to remember where my emotions were a mere week before.

The trip ended with a visit from Isaac who also happened to be in Southern California and was able to fly north so we could spend some hours with him. We also visited the Filoli House and Gardens before we returned to Shreveport. Two days after our return I had a chemo.

As I replayed and thought about the past month the image of Persephone popped into my head. I realized I feel like Persephone on steroids. My Hades is cancer, chemo, the indignity of sickness and its corresponding lethargy. But, I rise from the underworld to experience the renewal of Spring. The renewal of body and spirit as the Jewish prayer of sickness pleads for. The fact that my cycle is three weeks only intensifies the yo-yo effect. It may be odd to think of all this as a gift from cancer. But death, taxes, the sweetness of life; they aren’t polar opposites but the very fabric of our being. And being is what I am all about right now.

Happy Spring everyone!


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.