“Every doctor tells me something different,” I said.
The doctor replied, “That’s why we call them opinions.”
We benefited from a daylong conference about multiple myeloma hosted by the HealthTree Foundation of Lehi, Utah, and held at the Thompson Conference Center on the UT Austin campus. Four oncologists presented guidelines, recommendations, and recent findings in both morning and afternoon sessions. At lunch, two of them joined us at our table. Overall, I am looking forward to a longer timeline in a better situational context. Most encouraging was that my new goal of ten years will likely include alternative options and improved treatments. In fact, for the oncologist one of the challenges is the long list of approved drugs already available. For the patient, each one comes with an array of annoying or debilitating side effects from diarrhea to blindness and coronary arrest. That being as it may, the conference started out with a strong positive statement about the ongoing research: “It is a story of hope.”
It is also important to consider whatever else might ail you. “Try to avoid the chronic health issues of a fulltime patient” such as diabetes and high blood pressure. That speaks to the sociology of oncology. Treatments are not so readily available for those lacking social capital. Of the fifty or so attendees, every one looked like us: middle class people with health insurance. Nonetheless, I am in a support group that meets (virtually) once a month and of the ten or twelve of us, we have ten or twelve different stories. My catchphrase is: “Predictions are statistical; outcomes are individual.”
When the Plague struck, I mixed every concoction I could think of and half of my patients died by my hand and the ones who survived called me their savior. -- Faust
Hier war die Arzeney, die Patienten starben,
Und niemand fragte: wer genas?
So haben wir, mit höllischen Latwergen,
In diesen Thälern, diesen Bergen,
Weit schlimmer als die Pest getobt.
Ich habe selbst den Gift an Tausende gegeben,
Sie welkten hin, ich muß erleben
Daß man die frechen Mörder lobt.
Faust, Erster Teil, Vor dem Thor.
This was our medicine; the patients died,
“Who were restored?” none cared to ask.
With our infernal mixture thus, ere long,
These hills and peaceful vales among,
We rag'd more fiercely than the pest;
Myself the deadly poison did to thousands give;
They pined away, I yet must live,
To hear the reckless murderers blest.
Faust, Part I. Before the City Gate.
Translated by Bayard Taylor
Having moved 25 km south of Austin, I decided to find a cardiologist closer to home. The first one spent so little time with me–not 120 full seconds—that when I got down to my car, I stopped, turned around and went back in to insist on a consultation. I asked specifically about the side effects of oncology treatments and he was surprised. So, he set an appointment with another specialist.
I told that specialist that I have no knowledge of my own anatomy. Speaking to each other at the same time, I asked if I have a mitral valve prolapse—“Do you have a mitral valve prolapse?”—or a bicuspid aorta—“Do you have a bicuspid aorta?”—and how does the murmur sound—“Do you have a murmer?” He stopped. “You are asking me while I am asking you.”
Yes. I had an echo cardiogram the other day. Everyone listens to my heart. What can you tell me?
“We will know more when you have a CT scan.”
On the way home, I remembered “The Little Black Bag” by Cyril M. Kornbluth.
I forget things and that concerns me. So, I scheduled an Alzheimer’s assessment with a neurologist. I passed. She said that I have only (mild) age-related cognitive impairment. “It’s normal,” she said. “I don’t believe that it is normal,” I replied. “People like you never do,” she said.
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Welcome to the Future
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Misconduct in Science and Research
