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Does it matter to me that McCain and I now share a diagnosis? Maybe.

'I hope that his experiences are public enough that it helps many people understand this awful illness,' writes Jeffrey Weiss.

Sen. John McCain, R-Ariz., participates in a news conference on Capitol Hill in Washington, D.C., on Feb. 24, 2016.  (AP Photo/J. Scott Applewhite)

(RNS) — Likely you’ve seen the news. The medical information released about Sen. John McCain first described a nonspecific eye problem, then a nonspecific surgery and hospitalization. And now comes the acknowledgment that doctors found a tumor in his head. And that it is glioblastoma — GBM.

That’s not good news. As I discovered after my surgery seven months ago, the median survival time after diagnosis is about 15 months. Which means half of those diagnosed live for less time and half more — with not many living more than a couple of years.

I’m no doctor but I know three relevant factors about McCain’s case: Older patients tend to wind up on the shorter side of that median. But patients whose mental state is strong can shift to the longer side. And even many patients whose path to the Egress from GBM is close to the median enjoy a pretty good quality of life until near the end.

So if the Arizona Republican wants, it’s possible he’ll be back in the Senate for a while. And as is true for every patient I’ve discovered who shares my illness, I wish him the best possible path. We are all mortal.

What’s at times odd and terrible, and at other times interesting and admirable, is some of the reaction I’ve seen to McCain’s news.

On Facebook, among groups I belong to where the members have GBM or are the loved ones of people with GBM, I read some discussions about horribly smug reactions from GBM-ers who hold political positions opposite to McCain’s.

Republican vice presidential nominee Sarah Palin campaigns with running mate John McCain in Virginia. RNS photo by Lee Love

I’ve never been a political ally of McCain. Never met him, either. And I’ve ridiculed some of his positions and some of his decisions. (Um, dude, about choosing Sarah Palin for your running mate in 2008 — a vice presidential candidate should be qualified to be president.)

But I wish him well on this. I even sent an email to his daughter, suggesting that she be totally sure he’s got an expert and aggressive neuro-oncologist with lots of GBM experience. I suspect that McCain has one and did not need my suggestion.

Many of my Facebook friends with a tie to the illness took the high ground. A sampling:

  • “Sad to hear that Senator John McCain has GBM … but hopeful this means that some light will be shed in a MAJOR way on this disease that no one seems to know anything about or understand at all.”
  • “Yes, if it had to happen to another person … I’m glad it happened to someone so well known … so awareness will be raised!! and more solutions found!”
  • “I am here a bit in shock. Senator McCain’s office helped me when I needed it on my GBM road. Best wishes for helpful treatment.”
  • “So sad. I hate to hear anyone getting this diagnosis. I will be praying for him and his family.”

But the unkind, political comments drove one of my Facebook friends to write the following:

“I’ve loved this group and felt like it was a place to be with my husband dealing with Glioblastoma Multiforme. I am now leaving. We are very poor and destitute but would NEVER EVER bring politics into this discussion as the stress is ALREADY ENOUGH! John McCain is not my favorite person but does not deserve people bashing him in this SUPPORT GROUP.”

Others noted that Joe Biden’s son Beau and U.S. Sen. Ted Kennedy both died of this same kind of brain cancer. Maybe famous cases can help advance treatments.

My professional and even personal ambitions at this point are far smaller than McCain ever had. He was a military hero. And a civil and respectable politician, mostly. In embroiled Washington, he’s brought a note of sanity to governance since last November, though I may not agree with his political preferences.

What I know that he will know, however, is that he’s likely to have limits now that he did not have a year ago.

And the odds that some limits could emerge sooner rather than later?

This week showed me that possibility. I had my very first “focal seizure” less than two hours before an appointment with my neuro-oncologist. Suddenly I could not get words out of my mouth. Comprehension was fine. Physical coordination was fine. No pain. But nothing but garble.

So now I’m on a medication that fights seizures. And it makes me pretty sleepy. Maybe the seizure was produced by the equivalent of a scar — “radiation necrosis.” Next month, I’ll have another MRI to see if there’s evidence of the return of cancer that hasn’t shown up yet.

I was surprised and not surprised by my small seizure. This illness is associated with many symptoms that can worsen over time. I suspect that McCain’s docs are letting him and his family know that they need to stay alert.

But that does not mean he should have to limit himself based on the worst possible effects, unless it’s his choice. And McCain has more experience than most humans at maintaining a morally high-grounded set of ambitions in the face of serious physical obstacles.

Like many of my Facebook friends, I hope that his experiences are public enough that it helps many people understand this awful illness. And I hope he sets an example that will help those of us on a similar trip to our Egress appreciate how to find our own best paths.

(Jeffrey Weiss writes the RNS column “My Way to the Egress”)

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