M’Histoire: Over There!


Waiting for the bus, I catch myself singing under my breath, “Over
there! Over there! Send the Yanks, send the Yanks, over there!” It’s
been a week since my appointment with my primary care, and that song
has been running through my mind at least part of every day. This
morning my son was watching Man of La Mancha, and I ended up with
“Impossible Dream” in my mind, which is not quite as hopeful.

My doc was great. Every time push comes to shove, he comes through for
me. He listens. He doesn’t freak out when I bring in copies of
articles. He doesn’t laugh at me or discount what I have to say. He is
willing to take action based on information I provide. I’m lucky to
have found him, as his way of communicating is a good match for me.
Actually, the first time we saw him was luck. After that, I fought to
have him as our family’s primary care provider.

But what happened after I talked with my doc? Ah, well, yeah, right.
He is working on it. He is trying to connect with the surgical team to
see if they would consider using an MRA instead of the CT with
contrast that is so dangerous for me. Last I heard, after a week, he
had not heard back from them and was going to nudge them again.

The layers of people between a high profile surgeon and the people
trying to reach him tends to be pretty impressive. There are good
reasons why — their time is worth a lot of money, and they really do
need to be focused on their primary work. Most of the questions people
want to ask can rightly be addressed just as effectively if not more
so by someone else. So, it takes a while to get a question through
each layer to the surgeon when he really is the only person who can
answer it. As a patient, I don’t really have a chance, and for my doc,
even as another doctor, I don’t expect him to be able to get through
fast either. I do expect that he will eventually be able to get
through, tho, and am counting on it.

In any kind of conflict, I am one of those folks who wants to push
diplomacy as far as it can go before taking any kind of adversarial or
irreversible steps that might have larger consequences. Move slowly,
but be prepared to move quickly; speak softly, and carry that
dagnabbed big stick, but carry it gently. This is part of my martial
arts training also. These days I have to keep reminding myself.

The evening after I met with my doc, a week ago, I was talking with
all kinds of friends, as I was also for a few days beforehand while I
was researching the issues. This has all been going on and getting
more intense every since late October, and I hadn’t really been
talking to people about it. I didn’t start talking about it much until
a couple weeks ago.

It has been interesting. One was a mental health worker who herself
has a history of steroid psychosis. For her, it is not a big deal —
her docs premedicate with antipsychotics every time she has to go on
steroids, and that is that. It is handled, well, and not a concern.
Talked with a second friend who also has severe steroid psychosis, and
for her they never do CT contrast but use MRIs with gadolinium
contrast. Her docs also use the steroid psychosis prophylaxis when
needed. A friend who is a family medicine doc also told me about
gadolinium contrast. Two acquaintances who are psychiatrists told me
the same thing, essentially, “I don’t get it. Why are they doing this?
If you get drug-induced psychosis, just take antipsychotics. What’s
the big deal?” I talked with a small group of friends, finding two of
the seven came to me afterwards for copies of the information I’d
gathered on steroid psychosis prophylaxis for their own use.
Obviously, either my sampling is highly skewed in some odd way or this
is a much larger problem than I had believed.

What really tipped the balance for me was another story I heard. I had
met this young man once, as a relative of a friend. He was a really
nice guy, who had a tough life culminating in cancer during young
adulthood. I won’t give much in the way of details because I want to
protect the privacy of the family, and also because everything I know
is word of mouth. The relevant portion for my story is this. His
cancer treatments weren’t doing such a great job. He had a wide
variety of treatments, some of which included doses of steroids along
with something else, like chemo. Eventually, the docs told him they
had tried most of what they could think of and the best idea they had
at this point was to put him on a bunch of steroids, get him stronger,
before they could try another treatment. Rather than go back on
steroids, he killed himself.

Suddenly, I realized the problem I’m having with this is not about me.
This is a problem that many people face. There are solutions, it can
be prevented, but most people don’t know that, and that applies
equally to patients and doctors. Worst of all, some people are dying
because they don’t know or their doc doesn’t know. I remembered some
news articles I read about some perfectly nice person who was taking a
medication that changed their judgement, and they walked out in front
of oncoming traffic. It seems to me I’ve heard a few stories like
that, which never say what the medication was, but now I wonder if it
was steroids. Their death was called a sad accident, but how many sad
accidents are there, and how would we ever find out if steroids were
part of a pattern here?

Think about it — if you develop steroid psychosis, are you even sure
what is going on enough to accurately self-report? Are you going to
admit what happened, even to your doc? The worst reaction I had to
steroids, I did go back and tell the doc, who informed me (in not a
very nice way) that the only way what I described could be true was if
I had a history of psychosis and that it was my fault for having not
told him in advance that I was crazy. I never went back to him, but I
could sure understand not wanting to tell even your doctor, or family
or friends. As long as people are afraid to talk about it, nothing
will change.

I’ve decided it is my job now to be the person who talks about it. Who
breaks the ice. I am hoping I don’t regret this.