Be careful what you ask for…
“When you’re suddenly told that you have a condition that is considered terminal,” she said on the podcast the Human Guinea Pig Project in 2019, “the one thing you desperately need is psychological support, and it’s not there.”
Glioblastoma is a particularly aggressive type of brain tumor that seems to defy treatment. It is what killed President Biden’s son Beau in 2015 and Senator John McCain in 2017.
“Median survival, the point by which half of those with glioblastoma have died, is usually put at 14 months,” Ms. Morris wrote in the essay. “Only one in 20 people survive five years.” 2016 – 2021, Jessica did better than the median. What’s brutally unusual is knowing the date with death averages 14 months. Knowing is a blessing and a curse.
Cause Celebre? The NYT article hit right where I live. There’s history here:
I started neurosurgery in the 70’s. The big discovery was RT – radiation therapy – worked. It worked so well that the clinical trials ended early because it made such a dramatic difference. The median survival was 12 months with RT. Chemo added a couple months. Let’s see. I’m retired. Nearly 50 years later the numbers are about the same. We didn’t get far? We didn’t try hard? We ignored the disease?
There are always exceptions: Susan D survived more than 10 years after my initial treatment of her. I would shake my head in wonder each time she waltzed into my office past the secretaries and Ginny, my nurse, to plop down behind my desk and greet me, “How’s it going doc?” One day at the beach she reclaimed her wig (that resembled a “drowned rat”) from group of startled kids, when the wig washed from her head in a wave. Susan had the wherewithal to laugh at herself and make us laugh.
14 months? It is the median – the peak of the Bell curve. There are those who survive longer and those who succumb in less than a year.
Add Senator Ted Kennedy to the list. At the time of his diagnosis he convened a group of prominent neurosurgeons from around the US. One confided he did not want the honor of Kennedy’s surgery because his death soon after would be a negative impact on his reputation. We expected to hear, and, Ted got, the very best in neurosurgical state of the art treatment. Ted lasted about 18 months. He lived to make a speech at the DNC. Ted was not all there when he made that speech.
We have computer guided neurosurgery that will remove all visible tumor seen on the scan. The problem is that tumor cells lurk in the borders, too small to see or resect. The tumor genome is multi-ploidy. Therein lies our failure. We cannot simply resect brain without consequences.
There’s much promising research. We will cure this disease. We just haven’t made much progress in about 50 year. And, we have – made progress. Sorry, chemo, RT, and surgery, that’s it? Immunotherpy, gene therapy… all promising. Hope?!
Support? Yes, we do. I did. I prepared the family in advance. For the patient, hope. Always provide hope. This brain cancer takes away your ability to realize or care that you are dying. So, comfort is the word. As the patient, you will slowly lose track and be unaware you are dying. Your family will know. It will be particularly hard to watch mom become not mom. Therein lies the truth in telling the facts and letting family adjust to the inevitable. It is profoundly sad to lose a loved one no matter the circumstances. Support? Yes, I provided a lot.
There is not a single patient death that you ever shrug off. Knowing is a burden. Every single patient I ever lost was a defeat. Like a relief pitcher in baseball – full count, two outs in the 9th with the bases loaded – you don’t dwell on the home run you pitched last night. Compassion is something every physician must master. If your patient does not have hope, you need to rethink your approach. There is no compassion in telling your patient they are doomed outright. In this case, hope is lying. We (neurosurgeons) all know this.
The choices are not cookie cutter. Against the backdrop of the facts, Jessica sought hope. I never lied. If you ask, I’ll tell you. But… always, hope. Circular thinkng, but, if you ask for the truth….
Motion
Rick Reeves made spinning wheels. Ok, I bet that means something. It don’t mean a thing – hmmm, a song – to me, inasmuch as, what’s in a name? If you are a serious spinner the name is like a Leica camera. Drool, dream, pine, whisper, are all supporting descriptive adjectives. The internet had exactly one for sale the day I searched. It was in Texas, the wheel. After communicating with the owner, we agreed to try to ship the wheel intact. I commend UPS. The surcharge for shipping was near 30%. But the wheel arrived intact. There was a lot of packing. A lot!! Motion? The wheel and the bobbin are spinning in the pics. It’s subtle. Subtlety is the best way to appreciate a handcrafted signature wheel. I will further admit, I got a wheelbarrow for my birthday. A fair trade, I think. Not! Look closely. This a weaver’s home. Notice: two great wheels, a loom, a yarn winder, it’s all in the background. This is an idyllic setup for a spinner/weaver. No complaints. This is “home.”
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