Health care is complicated

My father, Glenn, developed back pains when he was in his 50s and he spent years trying to figure them out:  maybe it was sciatica, he thought, or the way he was sitting or moving at work, or maybe it was his mattress, maybe even his golf swing.  Whatever the cause, it was a nagging, persistent pain.  Later he began having serious vision problems, and after many tests and scans, we learned that he had a rare slow-growing tumor, called a chordoma, in his spine and in his skull.  The chordoma was causing his back pain and vision impairment, and was going to keep growing and cause even worse damage.

For his specific circumstances the doctors ruled out chemotherapy, and radiation wasn’t really effective.  So for the next several years my father underwent a series of surgeries, each more invasive and traumatic than the last.  There were multiple surgeries because the physicians weren’t able to excise all of the damage-causing tissue during a single operation, and also the chordoma kept growing.

Right after the first major surgery, in which my father’s skull was opened to allow access to the tumor, the physicians told us:  “The operation went great, Glenn was just super, we got a significant amount of tissue, and the vision problems should be under control.”  That sounded wonderful, sort of, and my father recovered quickly and was eager to get back to his life, and his golf game in particular. 

I say “sort of” because I asked one of the doctors 1) will he need another surgery?  and 2) if so, how long until the next one?  After some vague talk, the doctor finally said “Yes, we didn’t get all of the tumor, and it’s still growing, so we’ll need to do this again.”  When?  “That’s really hard to say, but in a few years the symptoms might come back.” 

A few years!  And then another invasive skull-cracking operation!  To me that seemed shocking and bleak.  But I wasn’t the one who would go blind, or worse, without another surgery.  Glenn was okay with the timeline, partly because he didn’t have much of a choice.  The tumor was going to come back. 

The surgery did clear up his vision and after a month of recovery he was back on the links two or three times a week. 

For a few years, anyway, like the doctors said.  That time turned out to be his best time.  Then the symptoms from the tumor started up again.  The symptoms were worse, and again my father went through another invasive, traumatic, cranial surgery.  After this second operation, his recovery was longer, the symptoms were only partially relieved, and the timeline until the next expected surgery was shorter.  

A couple of years later Glenn had already gone through a third punishing surgery, and was facing a fourth.  The tumor was still growing, still pressing on the brain and brainstem and causing severe neurological damage; and the surgeries were able to cut out less and less of the damaging tissue. 

Now, here’s the point to this story.  My father understood the situation clearly:  the next operation would be even more punishing, and the respite given to him – the time after his recovery from the surgery, until the appearance of new symptoms – would be brief, maybe only several months.  The doctors were frank with him and they weren’t trying to sugarcoat it.  (To me it seemed like they viewed Glenn as an interesting case and were willing to operate on him forever.  But that’s a different story!)

Nevertheless, Glenn said yes to the surgery, without hesitation.  Partly because he was a resilient guy and could take the punishment; partly because, as he said, there were still a few things left, a few visits with the grandchildren.  He wasn’t ready to give it up just yet. 

My mother and I, and the siblings, were torn, deeply.  (Emotionally torn.  Glenn was the one actually getting torn.)  It was wracking for us to see Glenn after the surgeries, knowing what had happened and what needed to happen for him to heal, and his slow, painful recoveries.  It was so brutal.  They were taking his skull apart and slicing up things inside!  And Glenn’s overall cheerfulness and optimism actually made it harder for us to bear:  it was almost as if he was in denial about what had just happened, as if his positivity was somehow a delusion.  But it wasn’t.  He knew.  He was just going to look forward, with hope.  

And so we rode along with his hope, with his optimism.  He knew what he was doing.  It was his decision.  Not some bureaucrat within Medicare, not Ezekiel Emanuel.  His insurance was paid up, so to speak, and he was using it. 

*    *    *    *

There was a documentary about hospice a few years ago which included a segment about a patient who had a grim cancer diagnosis.  She had gone through the slash/burn/poison regimens and had been beaten up pretty bad from them without much benefit.  She was transferred to a hospice facility.  While she was there she learned of a new cancer drug, recently launched, which had a small chance of doing some good for her, but did have (as many cancer drugs do) severe side effects. 

The documentary showed two hospice workers discussing the pros and cons of the new drug with the patient.  The hospice workers described the bad side effects, and the low probability of success, and how precious time would be used up with diarrhea or nausea and further pain.  Then they compared that with the alternative, a peaceful time with palliative drugs, a quiet time when the patient could be with her family and also enjoy it.  You could tell what the hospice workers thought was best, and what they thought the patient would surely say after hearing their arguments. 

But the patient, a cheerful looking black woman, said in a small but determined voice, “I want to try the new drug.” 

The hospice workers were surprised, even shocked.  Their faces showed disappointment from hearing the patient’s optimism.  They could have said “Right, and we’ll be with you all the way.”  They could have said “It will be tough but we will help you get through it.”  They could have said “You go girl, let’s give it a shot.” 

They didn’t.  One of them said, weakly, “Well, okay, I guess, if that’s what you want.” 

I don’t get that.  It’s her decision.  It’s her life.  That’s what you support.  

*    *    *    *

Finally, I want to stress how fabulous, how miraculous, the medical care was for my father.  How brilliant and magical the surgeons were.  I am going on and on about my father’s situation, but underneath all that, and the reason I have a story about Glenn in the first place and not just an obituary of a much shorter life, is the amazing proficiency of our medical profession.  What they can do with the human body is, literally, awesome.  This fantastic ability can get misused or misapplied, but that’s on us, not the providers.

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