As I walked to my car in the parking lot the other day, I forgot for a moment. I approached the car but stood back, waiting to access my passenger door while the driver of the car next to me quickly donned her sweater in the chilly air.
"Sorry I'm in your way," she said, quickly moving aside.
"No problem, you've gotta take care of yourself in this weather," I replied.
"Oh, don't I know it!" she said, launching into an unexpected discussion. "My husband is immune-suppressed and he can't go anywhere without getting terribly sick from everyone else. He just got over something! It's awful how terrible people are -- how selfish they are about being sick and not caring what they do to anyone else."
I agree, but where did that come from? Oh, yes, the mask!
When I go out, I now wear anti-viral surgery masks in public. With my cancer treatment killing those Neutrophils (the white blood cells that fight disease), I shouldn't go out in public without it. People with relatively common problems might infect me with something I may not be able to fight. She's been there, too, bless her. I appreciate her sympathy.
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| In my mask, when I had hair! |
In play here are a number of new challenges that we have not seen in the past. People are going out sick more frequently, for instance. Bugs are becoming truly resistant. The level of immunity in the population is declining, by choice: A significant number of parents have chosen not to vaccinate their children against the killer childhood diseases that my generation, and theirs, were vaccinated against routinely.
When the non-vaccinated numbers were low, this wasn't much of an issue, because enough people were vaccinated that any disease would not be likely to spread. This was called "herd immunity." Most of us grew up with herd immunity. Recently, the large holes in herd immunity allowed epidemics to break out. Many states, including the one I live in, are wrestling with measles, whooping cough and other diseases.
So, what's going on? When did we stop trusting science and doctors and replacing anecdotal and personal evidence over our community responsibility? Forbes author Neil Howe examines this in a great article about the so-called
"Anti-Vaxxers." He suggests that it is generational, driven in part because two generations have never seen how devastating these illnesses are. He also cites factors of poverty and an extremely low level of civic trust. Why should we believe those profit-driven doctors and the government? Can't we think for ourselves? What if our research says otherwise? Our skepticism,
cultivated by the media, has us paralyzed when it comes to public health.
I've been faced with this choice many times. In my sphere, I find -- hell, I have -- a fair amount of skepticism about "Big Medicine" and "Big Pharma." I had to wrestle with my own demons about the decision to have chemo. In my research, I was graced with
this incredibly impactful blog post that outlined how horrible it was to die of cancer, versus the challenges of chemotherapy.
Author David Gorski challenged me on a key point:
"What is also often forgotten or intentionally ignored by promoters of unscientific medicine is that doctors don’t use chemotherapy because they have some perverted love of “torturing” patients, because they’re in the pockets of big pharma and looking for cash, or because they are too lazy to find another way. They do it because, at least right now, it’s the best therapy science-based medicine has to offer...."
All medical caregivers take the Hippocratic Oath. They do take this responsibility seriously, so seriously that they only choose the protocols that have efficacy based on intense study. Whatever the warts that the "cancer industry" may have, practitioners do care and they want their patients to live. This isn't profit-driven gut feeling; there's evidence for every cancer treatment.
There is also evidence for every public health initiative. BUT WE DON'T BELIEVE THEM! Why are we afraid? Why aren't we more afraid of horrible disease?
Take the current measles outbreak: measles aren't fun. For those in cancer treatment, or those who need to suppress their immune system because it's attacking them for no reason, or those with babies too young to vaccinate, measles are now, rightfully, terrifying.
I didn't get the MMR vaccine; it didn't exist before I had a raging case in Kindergarten. I also got "German Measles" later. I was a very sick little girl, something my daughter did not have to face. I also remember lining up with the rest of my classmates for the Polio vaccine -- I still have the little scar it caused. (The vaccine today is much better than that.)
I remember something else clearly: Our nuns, who had seen Polio's effects first-hand in their work, were quite literally ecstatic that we weren't going to face that awful disease. Vaccines, with their
22 subdose regimen, are
far safer than the diseases we are once again facing.
The fact that I had measles doesn't matter. My immunity is gone for now; I can't even eat raw fruit because of the possibility food-borne disease. It's not merely speculation: when I crashed a few weeks ago (seems like forever), I began to develop a fever. I was getting sick from something...we may never know what. The three Neutrophils left in my body at that point must have been pretty tough...the problem did not develop into anything serious. But it might have, just as easily. If it had been viral, I was out of luck.
I feel like I been able to avoid certain situations that might have placed me in jeopardy only by the grace of God. It isn't pleasant, either: I have not always been able to see loved ones; I'm often sad that I can't be at certain events or certain places. It's not that I don't feel well enough, I have to be careful. In several weeks, normal levels of immunity return, although I'm not clear what happens about childhood disease immunity. I'm not sure we know.
Meanwhile, my status now means that any one of these most infectious childhood diseases, like the one that spreads easily and lives on surfaces for hours, may simply kill me, paralyze me or cause other untold suffering. How ironic would that be?
The woman I met in the parking lot had faced exactly that problem: Her husband is fighting for his life, and someone more careless about health made him sick, and maybe risked his life. Maybe that didn't need to happen, if only....
I know no one who wishes to be responsible for someone's death or suffering. I can't imagine that anyone would find it acceptable to force an immune-suppressed baby to experience great pain because of personal skepticism.
This mom's story of her immune suppressed baby exposed to measles at the doctor's office truly is almost criminal! (Happy news: he did not develop measles!)
It feels like we've let fear replace good thinking. As one Facebook post noted, "We've replaced logical thinking and science-based evidence with anecdotes and personal feelings."
That's just killer.
Survivors, are you immune-suppressed? Do you have a story to tell about disease exposure? Feel free to comment (keep it respectful, please) here, on Facebook, Inspire.com or Twitter.
Well, I did it. I completed the chemo. I'm on the mend from the last of the Abraxane. My hair is about 1/32 of an inch, generally, and it looks very white. I'm not perfectly well, but I feel better every day. I expect to go back to work on April 15, and I should be recovering nicely by then. Here's what I'm hoping: 
There's hope for better! There are many promising therapies in the wings. The most promising is training your own body to kill the cancer, mostly through the mechanism of a vaccine. I would happily participate in a trial, so I'm going to reach out to find one. 
