Never Tell Me The Odds:
One Man, One Disease, One Battle
Jim Prevor’s Perishable Pundit, January 6, 2011
Typically the Pundit is written in the third person. This is because the words are written on behalf of the organization. This is why the editorials of major newspapers are also written in the third person. Today, though, the topic is strictly personal and so I write in my own voice.
Over the years, I have often shared important personal events through my writing. Times of joy such as the birth of my first nephew, my wedding, the birth of my two children, first William and then Matthew and my 10th wedding anniversary… and more difficult times such as the battle we waged to save my father from Leukemia and the death of my friend, Joe Nucci, while our families were on vacation together. I wrote about my family’s longtime friend Frieda’s hospitalization and recently I’ve written about my friend Jan Fleming and her travails here, here and here.
To varying degrees, these people and the lessons learned were relevant to the industry, but I really wrote these pieces because I think it makes no sense to view life as a series of separate spheres. Growing up in a family business, we knew no lines, there was nothing to balance; there was just one integrated, sometimes messy thing called life that included family, friends and work. I know no other way.
Five years ago my father, Mike Prevor, who worked his entire professional life in the produce industry as a wholesaler, importer and exporter, among other things, was diagnosed with mylodysplastic syndrome, which quickly turned to acute myeleogous leukemia. He had weeks to live and, in a mad dash to secure treatment, my brother, sister and I persuaded the leading expert to take his case. We did a stem cell transplant with his identical twin brother, the transplant went well but there were serious complications, a gall bladder that was seriously diseased, a bout of atrial fibrillation that led my sister to summon her brothers because they didn’t know if my father would make it through the night. In the end, though, after half a year in Houston at the M.D. Anderson Cancer Center, we returned home triumphant. The leukemia seemingly was gone.
Father and son photo taken in late December 2010
When I recently wrote a little piece about Junior Pundit Primo, aka William, Disney World and the nature of Christmas miracles, I was already aware that my family desperately needed another one.
My father had been losing weight and experiencing gastro-intestinal distress of various kinds, so we did a scan and discovered a mass. It was biopsied locally in Boca Raton, Florida, and was diagnosed as pancreatic cancer.
I began, with my siblings, a search for treatment. But the statistics on pancreatic cancer are daunting; less than 5% of the victims of this disease are alive five years after diagnosis. After a Christmas search for options, we decided to return to M.D. Anderson, which is where I write this piece. I thought I would share the experience with an industry that also is filled with my friends:
Sunday night, January 2, 2011
We have arrived in Houston.
I try to remember what it was like almost five years ago when we headed off to M.D. Anderson. I do not remember feeling any emotion, only steely determination to effectively advocate for my father. The job, in recollection at least, was clear then. I had to get the hospital to agree to do the stem cell transplant despite my father being older than was typically acceptable and had to help my father get the support he would need to survive it.
I needed to stand with my mother, Roslyn Prevor, both so the experience would not be any more distressing for her than it had to be and so that her understandable emotion would not interfere with the course of action we would have to undertake; a course that would more than once find my father near death. I had to take care of my Uncle, Sydney Prevor, my father’s identical twin, whose precious stem cells were the key to the transplant. I had to make sure that my uncle’s family, my aunt and cousins would understand the stakes and remain supportive.
This time is different. It started out well enough, after the imaging in Boca Raton, when the head of radiology at Boca Community Hospital said it was suggestive of a lymphoma, I took Mom and Dad to dinner and laid out a possible plan of action. The survival rates for a lymphoma are better than that for the acute myeleogous leukemia he had endured almost five years ago, so it seemed, if not good news, at least tolerable.
When Boca pathology made the diagnosis of pancreatic cancer, it was as if all the light left the room. My father, always more concerned for my mother than himself, made jokes. As his children assembled from the corners of the country, he announced to my mother that they all wanted to pay a Shiva call. My mother wanted to hit him with a frying pan. I could scarcely bear to look at my mother. One look at my mother’s eyes, the tears welling as she tried to fight back the emotion lest my father should think himself the cause of her distress, one look as she silently pleaded with me, could I find anything to help? Was there, perhaps, one more rabbit in the hat from which we had pulled M.D. Anderson five years ago?
When my father made it through the stem cell transplant and came into full remission, when he returned from M.D. Anderson like Superman, not even needing a single drug, I was given a lot of credit. I had advocated, and I think effectively, for my father, but my role was always overstated. Aside from the fact that my mother, brother, sister and others also did much to help the situation, in the final analysis my father got well because of his own gritty determination to get well combined with medical technology that presented a path. My father had to survive the chemo, the complications of the transplant, and the cells had to take.
It was, for a 69-year-old man, no better than 50/50 odds, yet the payoff was so huge, a normal life of normal quality, that it was a risk worth taking.
In the last two weeks, as we awaited our appointment at Anderson, there were small rays of hope. The big cancer centers to which I sent scans and biopsy reports seemed hesitant to confirm the pancreatic diagnosis. Maybe it was a mistake, a lymphoma after all or a gastrointestinal cancer of lesser lethality.
Monday night, January 4, 2011
When we arrived on Sunday, I had already arranged our schedule. Today we finished our first full day of Chapter II of our stay at M.D. Anderson. Though we slept in the Rotary House, Anderson’s on-site hotel that we stayed in last time, the experience was different. Instead of the optimism with which we approached the first visit — bolstered by the thought that with an identical twin we had a special edge — now there was only a sense of deep foreboding.
Monday he also completed a bone marrow biopsy and blood work ordered by Dr. Richard Champlin, the physician and professor whose name I selected from all the doctors in the world as the one best able to help my father with the stem cell transplant. We had some good news. There was no evidence of cancer in the blood or bone marrow, which would have complicated treatment enormously.
But there was bad news as well. The test for Carbohydrate Antigen 19-9, the normal range for which is 0 — 35, was 546.6 H U/ml. This is a marker for gastrointestinal tumors. In a sense, the report added no information. We knew my father had a gastrointestinal tumor. Still seeing the numbers there, in black and white, and knowing that those numbers brought us one step closer to a pancreatic diagnosis was deeply disturbing.
Prevor family: Barry, Roz, Mike, Cheryl and Jim
Last time my sister, Cheryl, had just given birth. Now she is here with me and my parents. In accordance with our experience, my brother, Barry, stayed in reserve, ready to fly down when Cheryl or I had to leave. We tried very hard to never leave my parents alone in Houston and were mostly successful.
My sister is a big plus. She is much better than I ever was at taking care of my father and mother’s needs for creature comforts. She gets food and brings along wheelchairs and gives my Mom another person to talk to. She is a psychologist and sometimes reminds me of Deanna Troi from Star Trek: The Next Generation, the empathetic counselor on the Enterprise, who somehow knew what everyone was feeling. She also is very knowledgeable about the science behind the medicine and does copious research.
Yet, as we progressed, I felt all this was beside the point. The situation was tumbling out of our control, and our options seemed to be closing every moment. I felt myself possessed by an overwhelming fear that everything is coming down to one question: Is the cancer operable?
These GI tumors seem particularly tough. In the bone marrow transplant department, Dr Champlin mentioned that they were researching utilizing stem cell transplants on many types of cancer. The focus is on tumors that can be destroyed with stronger chemotherapy; the stem cell transplant is basically being used to enable the use of such intense chemo. GI tumors, he mentioned, generally did not respond well to additional or stronger chemo, so the research was not focused in that area.
I am keeping up our contacts with other cancer centers — an oncologist at Johns Hopkins, a surgeon at Sloan-Kettering, plus others. It seems that if they say the cancer is inoperable and they have no treatment options that are appealing, we should at least get a second and probably a third opinion.
We may have to make decisions that we didn’t have to last time. Last time, it was a big gamble, a leap of faith that we would walk away cured. In any case, the most likely outcomes were either a cure or that my father would die from infection or a side effect of the chemo. We had only one decision to make: yes or no, go or no-go. This time may turn out to be more complicated.
Now we have to be prepared to consider that circumstances may require us to switch from hoping to cure the disease to hoping to manage the disease to lengthen my father’s life and increase his quality of life.
This raises all kinds of complications. My parents will not want to stay in Houston very long if my father has a terminal illness. Quality of life starts to be a major issue, and there may be complicated trade-offs in how much extra time chemo and radiation will buy versus how much it will impinge on their enjoying the final chapter in my father’s life.
Last time I tried to be unemotional like Mr. Spock for my parents and with the doctors. I felt that my mother had enough emotion for the whole family and the doctors would respect intellect and logic more than emotion. Yet now I find it hard to contain my feelings. A cold wind of death feels closer, and my Internet searches seem more pointless. I keep saying to myself that if there is a solution to be found in this world, I must find it yet I feel myself thinking that instead of sitting in my room researching treatment options in Germany or how the Hadassah Medical Center in Israel is dealing with pancreatic cancer, I should go sit by my father.
He had a colonoscopy/endoscopy today. It was a pretty clean report and the doctor, although he did many biopsies, said he saw nothing that screamed out a problem. But there was a note on the report that he wanted to review the CT scan with contrast that we will do tomorrow (Tuesday, January 4, 2011) for evidence of splenic vein thrombosis.
I don’t know very much about this, but thromboses are blood clots, and this large vein that showed up in the colonoscopy could well be feeding a tumor. Each thing itself may be small, the CA 19-9 report, the possibility of splenic vein thrombosis, etc., but cumulatively it adds to the ominous feeling.
Anderson does not believe that the biopsied mass, which is sort of in the middle of nowhere, is the primary cancer. The CT scan with contrast, however, may provide some additional insight. At Cheryl’s suggestion, we overnighted tissue from the gallbladder and bile ducts my father had removed in Boca Raton after he returned from his stem cell transplant. Is it possible that the reason nobody can find a primary cancer is because it was in his gallbladder which was removed, thus leaving cells to grow into the mass we see today?
I find myself angry in a way I was not five years ago. My father’s internist learned about the diagnosis on Friday afternoon and intentionally concealed it until Monday — telling us she wanted us to have a “fun weekend” before she told us. Completely aside from the factual question of how many people actually have a “fun weekend” when they are waiting for a biopsy result, I thought it so far out of her realm of obligation I would consider it malpractice. Maybe we would have been at a cancer center two days earlier; maybe those two days would have made a difference. Probably not, but it wasn’t her information to conceal.
I can’t help but feel that my father was let down by many of his doctors. My father was a cancer patient, his father had cancer, his grandfather died of pancreatic cancer, and my father was having regular blood tests — why didn’t anyone suggest adding to his monthly profile a test for this CA 19-9? My father worked very hard and made a good living, in light of the cancer would it not have been prudent to do a total body scan every six months. He could afford it. Why didn’t anyone suggest it?
I wasn’t brought up, though, to expect other people to do things properly… I remember when I first started working for my father, he had me book the trucking for the export loads. Then he had me call to confirm, then check they were on the way, then confirm delivery. He taught me that it was our job to make the boat, and an errant trucker was not an acceptable excuse. My father was always proud that in a lifetime of export, he never missed a boat.
Of course, if you can’t blame the professionals, who can you blame? Mostly I blame myself. I feel horribly guilty. After the leukemia, I should have researched possible markers that could have been added to his blood profile. I should have insisted on regular scans. When my father expressed symptoms, I should have made the connection with pancreatic cancer.
We had almost five good years after the stem-cell transplant and I let down my guard. I walk the halls of M.D. Anderson painfully aware that my father may pay for my laxity with his life. I find it an almost unbearable thought. I try to remind myself that pancreatic cancer is so lethal, precisely because it presents so few symptoms until so late in the process and because the symptoms are of such a general nature that few cases are caught early enough for surgery — which is the only effective treatment.
Of course, it is not as if the medical system would have been all that cooperative even if I had the knowledge and presence of mind to suggest all these things. I feel that in the case of a man like my father, medicine is backwards. When he complained of pain or weight loss, the search was escalated up: Let us look for a herniated disk or pain from shingles, etc. Only a week before this was discovered, my father was with a GI doctor complaining about stomach pains and gas and the doctor said we could do a CT scan, but that would be overkill; let us just do a colonoscopy instead. I think with a man in his condition and with his history and family history, every doctor he went to should have assumed that whatever his symptoms, it was probably cancer and ordered the tests that would be needed to confirm such a diagnosis. Then, if nothing was found, they could always investigate lesser problems.
For all the talk of excessively expensive and defensive medicine, my assessment is that the medical system economizes excessively.
Tomorrow (Tuesday, January 4) we meet with Professor James Abbruzzese, and I will try to get a measure of the man. I have read about him and several of the papers he wrote. I think he is a very good oncologist. But that doesn’t mean he can cure my father.
The issues: 1) Is it pancreatic cancer? 2) Is it spread anywhere other than in the visible mass? 3) Is it operable? 4) Are there treatment options?
We returned to the Rotary House and ate at the hotel restaurant. You try to put away what is really on your mind at a time like this and focus on small joys. With myself and my siblings all having spouses and children, it is very rare that my brother and/or sister and I get to spend much time alone with my parents. We tell old family stories and laugh at our childhood antics. There are some nice moments but the stakes are too high. You snap a cell phone photo and wonder how many more we will be able to take. I try to chase such thoughts from my mind; I want to be upbeat, yet realistic with my parents. No false promises but no gloom and doom.
I’ve promised my father that if things should go badly he should know that we will love and support and protect my mother in every possible way. I think he knew that already, but I wanted to say it to him as my mother is the only thing I think he really worries about. They have taken care of each other since my mom was 15 years old and my dad 17. They moved directly from their family homes to a home together. They have never known anything but being together. It is, perhaps, the most beautiful thing I’ve ever had the privilege to see. There is scarcely a problem in the world that would not be lessened if everyone was like my parents. I feel like somehow, someway, something ought to be found to save this little patch of beauty in a too often ugly world. I spend all the time I can free up checking for “what if” treatments — things we can do if the diagnosis is bad and conventional treatment doesn’t go well.
Everyone heads off to bed, but we know that only a fitful night awaits us.
Tuesday, January 4, 2011
The day began with a CT scan with contrast. My father is allergic to the contrast, but at M.D. Anderson they manage the allergic reaction dosing with Benadryl and Prednisone. Back in Boca they didn’t do that.
Five years ago, I found M.D. Anderson on my own and we secured our initial appointment based on a letter I wrote to Dr. Champlin. Although very shortly we would be told that my father had only four weeks to live, we couldn’t get an appointment for months. I wrote a letter less about my father’s medical condition than the fact that he was my mother’s date for her Sweet 16. I included things I thought would be medically interesting such as his having an identical twin. Mostly, though, I pleaded for help that this man, the greatest man I have ever known, should be given a chance to continue to influence his family and the world. We got lucky. The professor’s secretary was leaving the job the week I wrote and, somehow, she was moved by the letter and vowed to get the Professor to call me. She did, and we were on our way to Houston in a few days.
This time we had a pre-established relationship and Dr. Champlin secured us an appointment with Dr. Abbruzzese, one of the top oncologists in this area and the chairman of Anderson’s department for GI cancers. My parents had donated a little money to M.D. Anderson to say thank you for the stem cell treatment and we have close friends who are big supporters of the institution, so whereas last time we fought for every appointment, this time we were fortunate, we were treated like V.I. P’s. But though being treated well is always nice, no special status can cure pancreatic cancer.
In the meantime there are other issues to deal with. Very often in these scenarios the big issue is not the daily problem. Although my father has cancer, his problem today is gas. After a colonoscopy/endoscopy yesterday and a barium enema this morning, he just feels lousy. We are trying to focus on oncology, but my father keeps running to the bathroom to pass gas. Such is the state of dealing with cancer.
The meeting with Dr. Abbruzzese makes me realize I couldn’t do his job for any amount of money. How many people does he have to deliver such painful news to each week?
The nurse, Ralph, takes the vitals and warns us to go to the emergency room if we have issues. The Physician’s Assistant, Alicia, who is of course neither a radiologist nor an oncologist, gives us a little hope. The mass is atypical for a pancreatic cancer. Maybe it is something else. A little light turns on.
Then Dr. Abbruzzese appears. I read many of his papers before the meeting and know he is smart and respected. I’m glad, for my parents, that he is also a nice man. Then I realize that he has a great deal of practice in telling people that their time on earth is more limited than they had hoped it to be. It is a “tough cancer,” he explains. The treatment options are few. He patiently goes through the scans, showing us the mass and how it has wrapped around veins and showing us spots on many organs.
He has no doubt it is pancreatic cancer and that it is inoperable. First wrapped around the veins that way, the surgery would be too difficult and my 74-year-old father might not survive it. Second, it has spread to too many places, so surgery would probably not do any good.
It is perhaps the most horrible diagnosis one can receive.
The doctor is honest but says the minimal amount. I suspect many patients don’t want to know the whole truth. My father is a realistic man and wants to know the facts so he pushes. He asks the doctor how long he has without any treatment and how long he has with the proposed chemotherapy.
The doctor says perhaps three months with no treatment, maybe six to nine with treatment.
I had worn an expensive suit and tie to the doctor’s office. I wanted to be in a power position not some schlub off the street. I was ready, if it was a close call, to fight for a surgical approach, which is the only real cure. My sister had a list of additional tests we should run.
But the news was deflating. My power position quickly became powerless. My sister’s plans seemed moot.
It is always important to have several people at these consults. Too many emotions and it is difficult to listen to the details when you have received bad news. This news, though, was so terrible, all of us were crushed. I feel like I should have brought a secretary to dispassionately take notes.
The plan is to quickly begin chemotherapy — gemcitabine and cisplatin. The hope is my father will tolerate well the every-other-week regimen, and it will not detract from his quality of life while it prolongs his life.
We hope he is not resistant. But the problem with this chemo cocktail is that most people develop resistance and it stops working.
My father remains in remarkably good spirits. He was told years ago that his body reacted well to medicine and his will is strong. So we hope that will be a little edge. Perhaps it will.
I’ve tried to find a way to think about this situation. My mind keeps going back to a scene in The Empire Strikes Back, one of the Star Wars movies. Han Solo has taken his spaceship, the Falcon, into an asteroid belt to protect himself and the Princess from the Empire. C-3PO starts calculating and announces the lousy odds of avoiding hitting an asteroid. Han, in the course of doing the statistically improbable, beseeches C-3PO: “Never tell me the odds.”
The only way I can see to be productive in this situation is to forget the odds, to remember that everyone is an individual and that the question at hand is how to help my father. One man, one disease, one battle.
My brother flies in immediately. We are all together again, parents and children together, the core family, as we were for so many years while growing up. Our parents always took care of us. We will try very hard to take care of them.
Before we came to Texas, I gathered my family and told them that we are going to forget about the statistics and fight with whatever intellect and abilities Team Prevor can muster. I reminded them that all our lives have been proof that we can beat the odds — so many successes in business and other areas in life that never could have been statistically predicted. When I started PRODUCE BUSINESS over a quarter century ago, I knew that, statistically the odds of succeeding were actually far worse than the odds of surviving pancreatic cancer. Yet we are still here, still publishing.
There is scarcely a problem in the world that would not be lessened if everyone was like my parents.
When I was a boy growing up on Long Island I used to drive with my mother and we would pass a house just off the Expressway that was a fancy “named” house. A great mansion called “Whispered Wishes” — my mom always liked that name. It reminded her, she explained, of a young couple, penniless, in some small garret somewhere sharing their dreams for a lifetime and seeing some of those dreams come true.
My parents’ entire life has been about dreams unfolding in contravention of all the odds. Part of it is business and financial success but also they have three children and six grandchildren, many nephews and nieces, and I think they are proud of us all. I remember last time in Houston, my father was mostly out of it and my mother and I were sitting by his hospital bed discussing a friend who needed treatment. The friend had said that they were jealous of how attentive my brother and sister and I had been to the situation and I said I was sure that this friend’s children would have done the same.
My father, sick as he was, roused himself to say that I was wrong. That they had plenty of friends whose children couldn’t be counted on. Who simply wouldn’t inconvenience themselves.
My father is a man of few words. But I remember thinking at that moment that even if all the treatment for the leukemia failed, I was very glad we had made the effort because I think my father would have died more content knowing he raised children who would, in fact, inconvenience themselves.
Just two months ago, my parents came to The New York Produce Show and Conference. I know my father was moved by a column I had written about my grandfather. In Yiddish there is a term “shep nachas,” and it means, roughly, to take pride or derive pleasure and the phrase is customarily used in the context of a parent or grandparent proud of the achievements of their children or grand children. My grandfather used to shep nachas from the achievements of his children, and as I saw my father walking the hall, finding old friends and getting to mix with almost 3,000 people — all of whom had no incentive other than to tell him that his eldest son is a genius — I think he got to shep a little nachas himself. I’m very glad my father got to see that, and I really hope he will get to see the next edition of The New York Produce Show and Conference later this year as well. I think we have to take things one year at a time.
I will not allow us to be psyched out of this battle. There is no clear path to victory over this cancer, but we will pursue every option and we will fight the good fight. I know a statistician would say I am crazy, but I somehow feel the statistics underestimate my father. I don’t know if we will beat it, but he has more than a few good years left in him. We are going to try to protect those years.
Somewhere we have a photo of my father’s old produce company with a tiny little sign hanging underneath a giant sign of the owner of the building, General Produce Company. In the fullness of time, my father bought General Produce Company and named that photo “The Minnow Swallowed the Whale.” How improbable was that? Maybe five years from now, my father will have on his desk a photo of himself at M.D. Anderson on the day of his grim diagnosis. Perhaps he will call it “Beating the Odds.”
What an exceptional man my father is. He approaches the chemo — and he has been through chemo so has some idea what it is like — with enthusiasm. He likes to tell the story of a devout man who each day lived virtuously and each day asked the Lord to grant him one wish: that he should win the Lottery. On his deathbed this devout man asked the Lord why, in light of his charitable deeds and virtuous life, he had never granted his wish to win the lottery. God spoke to the man and explained: “You never bought a ticket.”
As my father would say, maybe the chemotherapy will be his lottery ticket. He has to do it because maybe that is the tool through which God can save him.
My father sent an e-mail to his friends saying he was now in God’s hands. I have always had trouble seeing the world quite that way. After all, if this was a matter for God, then why would He have put such a good man in such a bad position to begin with?
Yet one thinks of God at a time like this and, after the diagnosis, as we walked back to the room, it began to rain and my sister said that God was crying.
As am I as I write this.
But I will hold back my tears and get to work. While there is life, there is hope. That means there is work to do and a battle to wage. I best get to it.
We have a very brilliant readership here at the Pundit and perhaps someone will have an idea or a connection that they would like to pass on. If so, my family and I are appreciative and you can send me a note here.
To those who would like to wish my father well, that is appreciated also, and you can send him a note here.