Patience Dear Patient

After I made the appointment for the second opinion with the head of Hematology at my university I had to wait. That, of course, gave me plenty of time to exercise my imagination. From what I had read on the internet I knew that not everyone was a candidate for a stem cell transplant. If I was not a candidate, the disease would finally take me, but that would probably not be soon. Still the end would not be pretty. “Wasting away,” it’s called.

While waiting I wrote few letters to MF for safe keeping. Years ago when my own mother died of a bone marrow disease I was 23. I had not lived at home for several years. Still I remember feeling like I never really got to know her as an adult. I had only known her through child and adolescent eyes. I still have a sense of loss about that. I expected MF would feel this all the more so, if I were to die when he was mere a teenager. So, I decided to try writing letters to an adult version of him. One of the thoughts that I had then became a source of resolve. The disease might take away our future together, but we won’t let it ruin our present. There is something perverse about letting worry about future loss render you unable to enjoy what you don’t want to lose while you still have it.

Nonetheless sometimes my imagination would outstrip what I understood to be the rational approach. I had begun strangely to experience the night sweats that I read about as possible symptoms; the fatigue from the anemia became for the first time really noticeable. I attended a conference in southern California—a place I was very happy to visit—and I was not much interested in socializing. I found myself more often resting in the hotel room, than strolling on the beach. I had begun to feel an enlarged spleen that I had read helps to produce blood as the scarring in the bone marrow inhibits blood production there. The thought did occur to me that perhaps my imagination was getting the best of me. But I discarded that I idea quickly as a failure to face up to reality. I was grimly determined not to live in denial.

When I arrived for the consultation for the second opinion, my chest was tight. Sitting was uncomfortable due to the perceived enlarged spleen, and my blood pressure was through the roof. The head of Hematology lead the consultation and he was accompanied by a younger doctor, who worked in his unit. The head doctor was kind, affable and calming. He assured me that there were options and, when I asked, he expressed confidence that I would see MF graduate from high school.

“The results of the previous bone marrow biopsy indicated an advanced stage of the disease, but they were inconclusive in some respects,” he said. I gritted my teeth when he recommended a second biopsy. He also recommended an ultrasound of the spleen to determine what I was confident was its enormous size. It was clear to me that the spleen was gorging. And what was up with my kidneys? Why was my creatinine level higher than normal? More testing was called for. More waiting.

One thought leads to another. But sometimes they do not lead out of the labyrinth of worry. But still I had papers to grade, conferences to attend, writing deadlines to meet, MF’s homework to supervise, The Dog to walk, and family weekend outings to plan. John Lennon once sang “Life is what happens when you are busy making other plans.” It’s also what happens when you are busy worrying about the future. Unfortunately, I was not always as rational as the moment of clarity in the letter to MF gave me reason to be.

If one values life, it is irrational to be so consumed with anxiety about its end that one loses the joy of living. Now I am far from the first to have realized this. In 23 BCE the Latin poet Horace wrote a poem with the words Carpe Diem:

“Whether Jove has many winters yet to give, or this our last;
This, that makes the Tyrrhene billows spend their strength against the shore.
Strain your wine and prove your wisdom; life is short; should hope be more?
In the moment of our talking, envious time has ebb’d away.
Seize the present; trust tomorrow e’en as little as you may.”

According to Matthew 6:34, about half century later, Jesus said, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” (The New Testament scholars of the Jesus Seminar doubt that the sentences can be attributed to the historical Jesus.) Another 100 or so years later the Stoic philosopher Epictetus warned of the debilitating role of the imagination. “Man is not worried by real problems so much as by his imagined anxieties about real problems.”

The ancient wisdom of Horace-Jesus-Epictetus is sound advice for patients. Most of us are accustomed to living lives directed in significant measure by our own aims. We are agents. Sure, we have to follow the laws, do what the boss says, be polite, etc. But in liberal societies adults have a great deal of scope to do as they want in the midst of these constraints. As patients, however, we may experience loss of control with regard to something that matters a lot to most of us, our health. We wait for test results. We let the doctors perform their curative attempts on us, and we wait and see what comes of it all. Typically there is little that we can do to influence the result. In these cases patience really is the best policy. Not that we can always exercise the kind of rational control over our fears that the counsel of patience recommends, but knowing that it is the rational policy provides some leverage on our emotional responses.

Patient and patience have a common Latin root. Some people deny that we are ever so completely patients, without the capacity to influence outcomes significantly. They maintain that we can always affect the outcome, rather than simply wait for it to come or to be known. Patience, they claim, is the counsel of defeatism. Instead, maintaining the right attitude towards the outcome helps to promote it. This is supposed to be the deep power of positive thinking. There is a new-age movie called The Secret that proclaims that maintaining a positive attitude causes health and riches. But if you are a friend or family member of a patient think carefully about this before you utter such a view to the patient.

It’s not just that the view is wishful thinking, although it is that. It’s much worse. Consider the logic. If good fortune reliably comes to those with good attitudes, then those suffering ill fortune have at least in part brought it upon themselves. In some way or other they must have failed to be sufficiently positive. The secret of The Secret is vicious victim blaming.

Having a good attitude is without a doubt crucially important. It’s the Carpe in Carpe Diem. The Horace-Jesus-Epictetus counsel is to let go of our worries about the future, whatever it might bring, because doing so let’s us enjoy the present. The value of a good attitude is not in its service to a better tomorrow, rather it’s constitutive of enjoying the present.

The ultrasound showed that my spleen was slightly enlarged, but not all that much really, and not any more than it had been for the last several years. That’s when a miracle of modern medicine occurred. Strangely I stopped being able to feel my spleen! What I was telling myself was grim determination not to live in denial turned out to be the anxious workings of my own imagination.

I steeled myself for the second bone marrow biopsy. A doctor that I had not seen before, who seemed hardly old enough to even be in medical school introduced herself. She escorted me into a room and to a gleaming stainless steel table and asked me to take off my shirt and pull down my pants to the point at which enough of my hip was exposed for her to get to work. She was all business. There would be no soccer chat this time. I lay there bracing myself. First the cool spray of the topical disinfectant. Then the needle anaesthetizing the tissue. She was very short so she had to lower the table to get the kind of leverage on the biopsy needle that she would need to pierce the bone. She drove the needle in. Grimace. She twisted it. And then it seemed as if she had decided to go on an exploratory mission. Was she heading off horizontally? More grimacing. The corner of my eyes were moist. She twisted the needle. She was working hard, and she was not satisfied. She was not finding what she was after. Finally, she asked, “Did they get blood last time?” How the hell should I know, I wanted to say. But instead I mustered a curt. “I don’t know.” Hmm. I wondered what it all meant. Could it be that my marrow was producing no blood at all? Finally, seemingly satisfied, she withdrew the needle and packed up. I pulled up my trousers and put on my shirt, and then I was invited to leave.

But I got up too soon. The ground below me had had transformed into a wave, and my legs were not surfing it well. As I headed to the waiting room, I resisted the strong temptation to sit down. I was not going to show any vulnerability, not there. I swerved to absorb the waves and headed down the hall. Where to? What next? I found a side corridor; in it was a vending machine. I leaned against it. Sugar…chocolate would help. I fumbled for the money, bought the candy, and ate it, as I weaved, but a bit more steadily, down the hall and out to my car where I could sit alone for a few minutes.

Another week or two of waiting went by, during which I had time to entertain magical thoughts of spontaneous healing. But when I went in for the results, there was no magic. No miraculous recovery. Medical books would not be re-written in light of the case of the philosopher whose disease inexplicably disappeared. The diagnosis from the previous bone marrow biopsy was confirmed. The myelofibrosis was in an advanced stage. I was in the upper section of the intermediate risk group. The median survival rate without a transplant was 3 years. The transplant had about a 70 percent success rate. The choice seemed clear. I could wait for a while on the transplant, but the longer I waited the more I would deteriorate and the success rate of the transplant would fall.

Myelofibrosis is an incredibly rare disease. There are only 18,000 diagnosed cases in the US. I don’t know a single person who has had it. Never met another patient. I have two colleagues who each knew people who had it. Both died. But neither had access to a transplant.

Was I a candidate for a transplant? Was I healthy enough? What about my kidneys? What about that creatinine level? A transplant is tough on the kidneys. They have to process all the chemo that is sent to destroy the bone marrow. Then if there is any trouble later with infections, the kidneys have to process the diagnostic fluid consumed to help identify where the infection is. I could perhaps end up dependent on dialysis. A nephrologist had to be consulted. I would need an ultrasound performed on my kidneys. I would have to wait and see if I were a candidate for transplant. And then even if I were a candidate, could a donor be found?

In time this all worked out. The kidneys are slightly weakened but stable, probably damaged from some unknown past infection. There is some risk of becoming dialysis dependent, but the benefits of the transplant certainly outweigh those risks. And although my two siblings were not matched donors, it turns out that in the donor bank there were many. Two anonymous donors were very quickly identified and secured.

I don’t claim to have been a model Stoic during this final period uncertainty, but I also wasn’t a complete wreck. Life is what continued to happen. BF and I went to a Bruce Springsteen concert. We had tickets for the standing section near the stage. The concert was like huge tent revival, but for the faithful of many creeds and even of none. Over 20 years ago I read an article by Michael Eric Dyson in which he described a Michael Jackson concert as a modern day secular religious experiences. The call and response, the fellowship, the ecstasy. Dyson nailed it. When Springsteen played “My Hometown,” a song about a town with a troubled racial past now suffering the ravages of de-industrialization, the audience of 10,000 people or more, took over the refrain, “My home town, my hometown.” It was haunting and beautiful.

I stood with my Rayban Wayfarers on. The guy next to me, at least two decades my junior stood in his Misfits baseball cap and Aviator sunglasses. Ragtag communicants at the altar of rock ‘n roll, we sang along to every song. Often nearly shouting, but our voices didn’t standout. The entire audience was the choir. Then Springsteen hit the chorus of “No Surrender.”

“Once we made a promise we swore we’d always remember
No retreat, baby, no surrender
Blood brothers in a stormy night
With a vow to defend
No retreat, baby, no surrender
No retreat, baby, no surrender.”

Something warm was streaming under my sunglasses. I looked over at my brother in song, and I saw tears appear from under the bottom edge his Aviators. Moved by the spirit, we sang on as the band played.

Father to Son and Back

Single Payer