This is a guest column by my husband, David Frackelton. I’m continuing to do the battle of the bulge, specifically my bloated belly. If you do anything for yourself today, be thankful for a functioning bowel. – Marta
“This has been the most difficult week of my life,” Marta said to me last night. I don’t agree, but then I’ve only been a witness to her suffering.
Let’s get the important disclaimers out of the way. We are receiving good to excellent care here at OHSU. Good when we have caring people who do their jobs with diligence and intelligence. Excellent when we have fearless partners in our continuing battle toward health. This hospital is, after all, a complex organization. As we float from day shift to swing to nights, we experience a new set of care givers who, among their many duties, engage with Marta’s rare cancer and the resulting conditions. Nausea. Pain. Constipation. Lack of nutrition.
And so we reached the milestone of a week in the hospital last night.
Keep in mind that we are right now in a battle with a constipation caused by a condition caused by a disease. The main front of the “war” is long term: the chemo appears to be working and in a while these very bad conditions should be more manageable, if not gone. We had our second round of chemo last Friday and there are early indications that it is working.
This is a beautiful place, with a fabulous view of everything. Light flows in from a large picture window. Sunrise is fabulous. You lose the sensation of time. Are you tired? Just rest. Are you hungry? Just go down to the third floor. Meal times shift for me. But not for Marta.
It’s been about 10 days since Marta has had any nutrition. She’s been NPO (nil per os) for the past 4 days. Marta’s bowel has stopped moving so food hits an immovable object and then comes back up. And also nothing coming out. This is a big problem and the reason we are still here, still waiting.
It must be hard for our care givers. None of the normal treatments work: enemas, suppositories and many injections. She’s getting all of her fluid intravenously. Lots of pain in her gut. And yet she is strong, her vitals good to excellent. Most of the time she is optimistic.
So we are surfing the limits of knowledge of our physicians. They are trained to be upbeat but there are moments when they have that look – like this particular cancer doesn’t behave like anything we know about, seen before, studied. That they’re saying things that fit more comfortably into the realm of belief rather than knowledge.
That’s because her cancer doesn’t behave. It’s rare. It’s fast growing and we are only catching up to it. My story it that there are probably 20 to 40 cases of what Marta has nationally. Since they have no numbers, no real science supports the treatments. The doctors have to make decisions within the art of medicine rather than the science.
And you can tell how uncomfortable the physicians are with this form of ignorance. Thinking at this level of abstraction – about the process, environment and system we are in – helps me understand better how to help Marta and be a more compassionate person.
There is a scientific way to think about ignorance. An academic paper I read four years ago describes how ignorance functions in systems design. Indeed, that’s what experts (like doctors or engineers) get paid for: either they already know the answer or they know efficiently how to find the answer. Because of the rarity of Marta’s cancer (recurrent clear cell ovarian adenocarcenoma) our doctors are working within the Second order of Ignorance. This is where you don’t know what you don’t know.
And the responses to this level of ignorance from them vary by individual and within the process of treatment. I think the doctors have the hardest time with confronting how little they know about Marta’s cancer and the conditions that follow. We’ve had to be strong patient advocates for including massage, acupuncture and some off-label (but legal in Oregon) medications. The doctors encourage bringing in other medical disciplines but the box they work in (a major research hospital) forces us to be vocal and persuasive.
And this advocacy takes time and energy. I feel like I’m helping Marta and I know as the days of pain meds and nausea continue, I’m the one keeping track of what has happened. It’s hard when you have to ask, “what day is this again?”
I know that yesterday (Tuesday) was a turning point. Comprehensive tests proved there was no intestinal blockage and the doctors have determined that the narcotics she was on were making the problems worse. We will be seeing the OHSU acupuncture doctor late today. We are pulling in many tools from many disciplines.
It is Wednesday. I’m proclaiming right now that we will be leaving the hospital with good bowel function on Friday. May I be right.