Scans at the end of cycle 4 were stable so I continue on the
study drug for the interim. There has been no improvement since the dramatic
improvement after the first set of scans, but there has not been any disease
progression either. The gastro-intestinal effects of the drug are more-or-less
controlled by other drugs. Fatigue is manageable. I came out in a very itchy
rash that is apparently due to the prior radiation and is called radiation
recall. Hydrocortisone ointment takes care of it. I am still cramming
everything I’ve got into my every day. I went to five cons over the last two
months and I have a 5k road race tomorrow. Next weekend, I’m going to Las
Vegas. I still work and garden and read and play with the dog.
*
Although most health care personnel I interact with are
clearly deeply compassionate and well-intentioned, I have experienced a series
of expressive mishaps in the hospital and doctor’s office. It can’t be easy to
give the worst news most of us will ever hear or deal with our fragile
emotions, but sometimes the words that are supposed to comfort us contradict
the best intentions. I realize that not everyone scrutinizes every verbal
interaction with my intensity, however when communication goes awry, there are
unintended consequences and implicit inferences are made that influence
behavior.
Clichés
My mother used to respond to every situation with a little aphorism
or cliché. It annoyed me then and when the surgeon or anesthetist of
phlebotomist does it now, it annoys me again. I never had the chance to have an
adult conversation with my mother. She was diagnosed with breast cancer when I
was 10 and she died when I was 18. I never responded to sayings like
>If it’s worth
doing, it’s worth doing well.
Of course, not everything is worth doing well. If you try to
do everything perfectly, you won’t get anything done. Now my response might be
another cliché:
>That leads to
being paralyzed by perfection.
Talking to patients in clichés sends the message that you
are not really listening. You are automatically responding with words that have
no meaning and just filling the emptiness of my deep distress. Even if you do
care, the message you are sending is one of disinterest and indifference.
One of my least favorite clichés, used by nuclear medicine
technicians, receptionists and nurses alike is
>Everything happens
for a reason.
This is often said with assurance and wisdom. I narrow my
eyes and tilt my head and I burn to respond with,
>What do you mean?
There are at least two interpretations. It could mean that
you think that the reason I have cancer is because I did something to set it in
motion. My actions caused the cancer. (Aristotle’s efficient cause.) I’m sure
that is not what was meant, but clichés will have multiple interpretations.
However, if you mean that there is some future benefit in a disease that will
soon kill me (final cause), that’s equally unacceptable. The future cannot
cause the present. It is completely meaningless to say that everything happens
for a reason. Life is a series of unpredictable events.
Everything happens for a reason is often accompanied by
>Everything will be
OK.
You and I both know that is not true. It won’t
You make my life
difficult
The lab technical were I get my scans, suggested that I get
a port because she was having difficulty getting an IV line into my vein. I
told her that I would get a port when it became medically necessary. If she was
having trouble with the IV then she should call someone with more experience. I
was not comfortable with the message that she was sending that she was not very
competent.
Tell me what is in
your file
I went for genetic testing. The genetic counselor was
wonderful. She summarized by medical history and then met with me and an
oncologist (not my usual one). The oncologist had not looked at my file, not
even read the short summary in front of her. She asked me to repeat my whole
medical and surgical history. I have to say I was confused. Surely a concise
summary by an educated professional was more accurate than my rambling story
which was prone to errors in memory and interpretation. As I recounted my
history, I got more and more upset. And the oncologist just sat there
impassively. I felt like one of those interviewees on the news. I was half
expecting a news anchor to stick a camera in my face at any minute and ask how
I feel.
Life is uncertain for
us all
I can’t tell you how many times a doctor or nurse has said:
>I could be hit by
a bus
I understand that they are using this as a metaphor to
demonstrate that random events happen and perfectly healthy people die too.
However, I think this metaphor trivializes our anxiety. There really is no
connection between your random event and my certain one. Your chance of being
hit by a bus is about 1: 1,000,000. Your chance of being hit by a meteorite is
actually more likely at 1: 500,000. Now, I don’t know about you but I have
never woken at 2 AM worrying that I am going to be hit by a meteorite but I
have woken at 2 AM plenty of times with the cold reality of fear that my life
is going to be over soon.
What is your learning
style?
I needed radiation to the lesion in my hip. The patient
interview at the radiology department started with asking me how I learn best,
e.g., reading, being told, or watching. In other words, they were asking my learning
style. I answered that we all learn better by having the information presented
in as many ways as possible and there was no evidence for a particular learning
style being more effective. Then I wrote to the CMO and told him that emphasis
on unscientific fads negatively impacted the credibility of the hospital.
Too much optimism
I think the surgeon who was doing my biopsy was trying to
reassure me and give me hope when he said,
>It may be nothing.
He was referring to the metastasis that had been clearly
seen on a bone scan and accompanied by an alarming rise in tumor markers.
>I don’t think so, I
replied.
He looked chagrined for a moment and then said he didn’t
think so either. However, I could not shake the feeling that I was to trust
this man with a knife in my body while I slept and he had tried to mislead me
with false hope.
When I was diagnosed with stage IV, my oncologist, gave her
optimism speech. She told me about patients who had lived a decade or more
after a diagnosis of stage IV. I let her talk and then I patted her hand and
reassured her that I trusted she would do her best, but I made it clear that I
needed concrete information. I needed to trust her. When people talk in
abstract terms, you are inclined to find them less trustworthy. That makes
sense if you think about it. If someone is being evasive, they are using vague
language. The process becomes clouded as we try to figure out what they are
hiding. I often leave believing the situation is much worse than it really is
because it was all so vague. I have heard doctors say that they are just trying
to give patients hope. Sometimes, I wonder if it is the doctors who are trying
to give themselves hope. When patients don’t live up to the believed
expectations of treatment response, they hide information from the doctor. It
would be much more beneficial to say that there are patients who respond very
well to treatment. However, these cases are rare but here is no reason why any
one patient cannot be one of these lucky few. There are no guarantees either.