Chapter 13: PET Scans and Water
Remember Bringer of Doom from my initial diagnosis? Well, this is where she (briefly) comes back into my story. I tell you the following story:
- To continue the narrative of the book,
- To amuse the twisted and snarky,
- As a cautionary tale for those who seek to serve.
Normally when you get a medical test, you get a result. Oftentimes, these are nice and definitive. For example, the morning I received the PET scan results I also got the results of my latest blood tests. I found out that my platelets were 17. That’s good, because two days before they were 7. You see what I mean about definitive. “Hey Dave, how are those platelets coming?”
“17, thanks for asking.”
Well, PET scans aren’t always so nice. They require professional interpretation. A radiologist looks at them and says things like “appears normal,” or “some indication of abnormality in the mesentery region.” This can be very unnerving. “Hey Dave, how’s that mesentery region?”
“Ah, you know, showing signs of abnormality.”
It is with this background that I went to see my oncologist Dr. G. As usual, the first doctor I saw was not my doctor, but one of a seemingly endless shifting cast of oncology fellows. It turns out this fellow I had seen before. She is the one that a year ago (almost to the day) told me that I had lymphoma and then kicked my wife out to do a bone marrow biopsy before the pathology lab closed: the Bringer of Doom.
Bringer of Doom came in that morning, asked how I was feeling, and then stated that the PET results showed uptake in the abdomen, meaning that the chemo wasn’t working. Worse still, as my wife pointed out, it seems to have spread since the last PET scan didn’t show anything in the gut.
I will pause here to point out for my more excitable readers that this story does, as far as it can, have a happy ending…just wait for it.
“Last PET scan? Was that in May?” asked Bringer of Doom.
“No it would have been October.” I responded attempting not to notice my wife’s tears welling up and her low refrain of “oh shoot oh shoot oh shoot,” (she didn’t actually use the word shoot).
“Was it here?” asked Bringer of Doom.
“No, it was at HemOc.”
“Oh, I’ll have to look at that in the external record. I only went back to November and I didn’t see anything. In any case, your doctor will be in soon,” and Bringer of Doom felt for my lymph nodes, listened to my lungs, and left.
Now I would like to describe to you the immensely awkward feeling you have when, in a small examination room with your wife, you are told that your “salvage treatment” (actual medical terminology) is not working. You can’t lose it or your wife will. You have to be brave and not wail like a little girl amongst nurses you have come to know and like. I would like to describe that for you, but before I could figure it out, there was a knock on the door. I had to have a social worker do an assessment of me for my insurance and now was the time. The best question asked during the assessment: How do you cope with stress? Answer: shrug. In case the social worker is reading this, I would like to change my answer – writing sarcastic prose.
So the social worker leaves, and in walks Dr. G, a new nurse, and, of course, Bringer of Doom.
“So I’ve looked at the PET scan results and actually they look pretty good to me,” says Doctor G.
“Glurp?!” is what I am guessing I said…just imagine Scooby Doo confused at something profound Shaggy just said and you’ll get the picture.
“Well, reading from October’s PET scan it is clear that all of the cancer in the neck and chest, where it was growing, is now gone,” said the angel wearing a lab coat. “What’s more, I’ll have to talk to the radiologist this afternoon, but PET scans always find junk in the mesentery region.”
“What is the mesentery region?” asked my wife who was clearly now paying very close attention.
“It is the tissue and such that interlace the bowels. The PET scan could be picking up bowel activity, or inflammation. I’ll know more when I talk to the radiologist. The point is that I see this as very positive. The chemo is working. The question is now whether to do one more round of chemo to be sure, or move into the harvest and transplant.”
I put quotes around that last part like it is what Dr. G actually said. Truth be told I know that was the gist of it, but a mix of relief and rage made the dictation a bit difficult. Relief that things were now looking up, and rage that we didn’t start at that point.
So I’m going to finish this story up in two ways:
- Where I was in terms of my treatment and transplant, and
- Why this is a cautionary tale for those who seek to serve.
So, for my treatment, Dr. G consulted the radiologist to look at the current and previous scan. They were convinced that chemo had been effective, and the mesentery stuff was just ghosts. So I was to proceed to harvesting my stem cells and then the actual transplant.
So, good news? Yes. Clearest best possible news? No, but those seem pretty hard to come by in medicine of any complexity.
Also, be assured that we brought up Bringer of Doom’s delivery issues and were assured it was a problem that would be dealt with.
Which brings me to those who seek to serve: we (librarians, teachers, professors, doctors) often like to talk about “informing” as if it were a verb that means something. The assumption we make is that by providing more information faster, we can help people make better decisions. What’s more, there is an unstated assumption that information is like water. Bad information can simply be flushed away with good information. This is wrong.
It is wrong because no matter how much water you use to flush something the previous taint leaves a mark; it leaves an imprint that will color all the information to follow. Because of Bringer of Doom’s propensity to deliver bad news badly, I had (have) more doubts about PET scans, my treatment, even the current state of my health and prognosis because that was where I started.
But, more importantly, the whole idea of “informing” and “more information canceling out bad information” is wrong because it represents a detached and clinical view of people. “To inform,” sounds objective. It sounds like we present the facts, or some nuggets of data that are entirely up to those receiving it to interpret. Too often we hide behind this idea to distance ourselves from the troubles of those we seek to serve. I am not saying this from one bad day with one doctor with bad people skills. Research shows us that how we get information and in what order matters.
Instead of informing users, we must see our job as helping a person to learn. Doctor, professor, teacher, librarian all can no longer believe that simply pushing information at someone and if necessary fixing it later is acceptable. When I learn, when I am “informed,” it is more than my memory and reason you affect. It is my emotions, my needs, my image of self.
There is a responsibility for those in the professional services to see beyond a question, or a task, or an interaction, and into the person they seek to serve. This is why we do not have “customers” who can simply return an item they do not like. Nor consumers who vacuum up our output. Nor do we have “users” that might as well be reading off a glowing screen. We have students, and patients, and faculty, and neighbors who come to us with what seem like questions, but are really needs, aspirations, and dreams.
I recall Betsy Kennedy, the director of the Cazenovia Public Library, talking about a program to give new books to poor kids. She talked about how one child upon receiving the book began to cry. “It’s the first new thing that I’ve ever owned,” said the child. That was not just a book, but worth, meaning, hope to that child, and Betsy knew it. She used that child’s inspiration to create programs to help other needy families. When the families came in for books for their kids, she and the other librarians and volunteers recognized the need for educational opportunities for the parents as well. She helped create GED programs located in food pantries for the needy of her region. She doesn’t serve readers, or patrons; she lifts up whole communities.
If all you do is stand behind the desk (real or metaphorical) and answer questions or inform – if all you do is lecture – if all you do is listen to a list of symptoms and prescribe drugs-then you are not doing your real job. Patients have better outcomes when they are part of treatment decisions. Students have better outcomes when they shape their learning. Members have better experiences when a librarian takes the time to get beyond the question to the real need.
What we know may make us experts, but whom we serve makes us noble. It is not in your insight and expertise we find the true measure of worth for a librarian, lawyer, doctor, or teacher. It is in the success of the communities we serve.
If you know you can impact someone’s life, take care and take the time to know when and how to teach. And if you don’t think you can have that kind of impact? Then please understand that you may well be the Bringer of Doom and not even know it.