This Idea Must Live

We were all there: my mother and father, Jaylan’s mother and absence of father, his grandmother and I and Jaylan. The new nurse was there, too, the one whose name we couldn’t remember, and the new check-in girl where Erika usually worked, and the pharmacist who cried when I cried when the insurance company approved the five thousand dollar a month medicine, the obese patients who ferried in obese wheelchairs, the neurology patients who looked the right age and the ones clearly too young, the marvelous Anita in admitting, the volunteers pouring napalm-hot coffee, the parking attendant in her booth, blue-suited doctors appearing from the other side of the elevator, families staking out claims in circles of chairs, singles waiting for taxis, green emergency room bags of their belongings slung over their shoulders or IV poles on their hospital wheelchairs, the ones who nap in broad hospital daylight, the ones who don’t mute their crying devices or their children’s, the rad techs calling out names, the lunch ladies, the brain surgeons. We were all there.

The six of us crowded into the largest room, which the nurse had reserved when she saw us coming in the usual herd of rustling coats and brave faces. Jaylan’s blood pressure was high that morning – too high. Our complacency puzzled the nurse; we wanted only to know if the brain cancer was worse than it had been the last time, when Jaylan decided that he couldn’t do chemotherapy any more. Not for awhile.

Funny how he misses his chemo nurses these days. We both do. Ellie, Mark, and Tom, Glenn and Mary and Meri, Dana and Rose. They are up on Eight Southeast, “in the weeds,” as Ellie would say, being irreverent and kind to other patients now. We miss them, and I hope none of us ever see them again. Not if it means sitting, watching, thinking, and dreading the hours and days ahead while the machine counts down the milligrams of toxic chemicals dripping into the tube. From the tube to the port to his jugular and the days and nights of carefully monitoring the balance of nausea and bowel movements – those bone-tired days and nights.

Thank goodness for the port, though; thank goodness for the manufacturers and factories and engineers, and for the materials, and the technology, and the knowledge that led to the creation of this device, which is implanted under the skin of his chest. The port is goodness in the form of a medical device; it is the goodness of veins gone ropy gone soft again, of the healed pits of his elbows and the promise of fewer sticks – we don’t even go to phlebotomy anymore. Once a month, we pop in on Ellie or Dana or Mark for a quick port flush and a joke. The rad techs take care of the port on MRI days.

On the way to the MRI, he’d put on Radiohead instead of Soundgarden. He likes to kick ass on the way to the hospital, so we usually blast our favorite ’90s rock, even the saddest, hardest ones with the lyrics that hurt. Radiohead has a lot of lyrics like that too, but this morning, every song was healing. “Pyramid Song” came on. “There was nothing to fear, nothing to doubt. There was nothing to fear, nothing to doubt. Nothing to fear, nothing to doubt.” I clung to these lyrics, through the parking garage, into the waiting room, and through the waiting.

Two hours after the MRI, we met with Carrie. She’s not a doctor, but we think of her that way. She’s a nurse, but not the sort who’s assigned to take your blood pressure. She’s our neuro-oncologist’s right-hand man, and the kind of nurse who delivers MRI results sometimes. Carrie entered the room with the posture of a busy person. Warm and businesslike, Carrie greeted us and asked Jaylan how he’d been. Jaylan claims that he knows the results of an MRI based on the tone that Carrie or the doctor has when entering the room. The first time, in the first room, in the moments before we’d known that the mass in Jaylan’s brain was cancer, before the prognosis, the doctor had revealed something to Jaylan in the way he’d asked how Jaylan was feeling. I don’t remember that. I remember: “This will almost certainly shorten your life.” I remember the heavy lines on the doctor’s face and the way his hair complemented his name: Silbergeld. I remember I didn’t understand. Apart from the sudden onset of seizures, everything had been fine for as long as we could remember. Jaylan was fine. But he wasn’t.

This time, Jaylan told Carrie he’d been doing well, or maybe he said great. “Well your scan looks great!” she said. I may be adding the exclamation. I never look around the room when we hear the results. I look at Jaylan, or I look inward, closing my eyes. This time, I reached out for him and hugged him hard. We were relieved. We’d expected things to look worse.

Before January 8, Jaylan had been receiving two chemotherapies, one of which has the unhelpful effect of obscuring tumor activity on MRIs. When we decided to discontinue chemo, then, we knew it meant that subsequent MRIs might show tumor activity that had been there all along, but had been hidden because of this chemotherapy. In other words, the MRIs might look worse – would probably look worse. Even worse, what we saw wouldn’t mean anything. It wouldn’t yield information; it would simply provide a new baseline. If the following MRI showed tumor growth, then we’d know that things were getting worse.

Basically, when we went to the hospital that day, we were prepared to see tumor growth, and to spend six weeks trying to believe that it wasn’t what it appeared to be; we would try, but not being afraid would be impossible. Of course, we hoped for the best. We hoped that the scans would show a stable tumor, one that showed no signs of growth. That’s exactly what happened. We floated out of the doctor’s office and home, unburdened. I feel so much lighter, I said. Jaylan said that he did, too. No, I actually feel like I weigh less, he said. That’s exactly what I had meant.

An unexpectedly difficult thing about Jaylan’s cancer treatment has been that we don’t know why he’s doing so well. Everyone has a theory, but not even the doctors really know. Is it this or that chemotherapy, or the combination of them? Is it the combination of the chemo with the antiviral drug that’s off-label (not meant for this disease)? Is it Jaylan’s general youth and good health, his positive frame of mind? Is it the fact that all six of us go to the hospital for each appointment? None of us would take the chance that it isn’t our very presence in his life that is keeping him alive, as irrational as that is.

I recently heard about an effort to expose irrational ideas to the light in order to eradicate them once and for all.

Edge.org is the evolution of a salon-style gathering of thinkers called the Reality Club. From the mid 1980s through the ’90s, the Reality Club pursued their mission, “to arrive at the edge of the world’s knowledge, seek out the most complex and sophisticated minds, put them in a room together, and have them ask each other the questions they are asking themselves.” Edge.org describes itself as belonging to the “Third Culture,” which consists of people whose “creative work has expanded our notion of who and what we are.”

Once a year, Edge.org poses a question to its members and publishes their answers in a book, including the recently released This Idea Must Die. The subtitle is Scientific Theories that are Blocking Progress. Included among them are a range of ideas, both scientific and social, including a neurologist’s revelation that using mouse models is at best an unproductive way to pursue research into cancer treatment and an actor’s argument that we ought to go ahead and get rid of the idea that things are either true or they’re false.

Setting the value of dichotomous thinking aside for a moment, if there are ideas that must die (surely), then there are ideas that must live. The possibility of world peace, for example. The power of a mind to overcome itself. The necessity of good stewardship of the earth. Human rights. These are social issues, with occasional scientific overlap. I think of quantum entanglement in the opposite way: as a scientific idea with social overlap.

Quantum entanglement (with apologies to the physicists in the room) is the idea that particles once connected remain connected despite the distance of space and time between them. Socially, I think of entanglement as the idea that we are all not just interconnected, but somehow twinned to those we care about. A Buddhist might say that what I’m describing is the effect of practicing compassion; a Christian would say it’s God. Surely, what I’m describing is a bastardized version of quantum entanglement, putting me near to or on the level of people who think karma means “everything happens for a reason.” Maybe I don’t even mean entanglement. Maybe what I’m describing is more like special relativity, or the butterfly effect. Whatever it is, this feels true: Jaylan and I believe that it matters that people are thinking of us. Even when the news is good, we fear losing the white light, the prayers, the witchy vibes and supporting arms coming from every corner of our lives.

After his MRI, Jaylan went to Spokane for a week to be with family, as he often does. I usually post something about the results on social media so that the many people who are regularly thinking of him are up to date on what’s happening. This time, Jaylan asked me to wait, so he could tell people in person. I’m not sure whether he showed them the pictures that we took of the scans, but they require no interpretation. What was once a glowing white, tentacled mass covering most of the right frontal lobe of his brain and pushing the midline toward a casual C has shrunk to resemble nothing so much as a pine nut, which I noted in the doctor’s office, to everyone’s amusement.

The music Jaylan had heard that day seemed to have predicted the good news. It wasn’t just “Pyramid Song.” These days, you can listen to music in an MRI machine. They’ll play anything you want; they’ll even play it loud. Jaylan had requested Radiohead. Of all the songs in Radiohead’s cynical, truth-telling catalog, it was the upbeat “Lotus Flower” he heard, followed by “No Surprises,” and finally, as the MRI was wrapping up, “Everything in its Right Place.”

The songs became central to his story about the MRI results. If the news had been bad, those songs would have been ruined forever. Instead, they seemed harbingers of the coming relief. One day, he called me from Spokane in utter amazement. Over drinks with Kari, it had come out that she had been stuck in a musical rut, listening to Radiohead all week. She couldn’t stop listening to “No Surprises.” To Jaylan, it was no coincidence, and he’s not one to look for signs.

If ideas require embodiment to be understood – if prayer is best made sense of on your knees, and blue pills deliver wellness, and we speak of love as though it were a consequence of gravity – then quantum entanglement is a hospital of steel and glass and concrete. At the center of the hospital in my mind is Jaylan. In concentric circles around him are the healers – the nurses, doctors, hospital workers, the family and friends, the friends of friends and Facebook friends and neighbors, the co-workers and bosses, and, and, and, into the whole entangled universe in which thoughts are real and powerful; in which our support for each other makes a tremendous difference in the outcomes of all our lives.

This idea must live.

15 Comments

  • Christine says:

    I love this beautifully written update and the two of you. Long live Jaylan (and Radiohead)!

  • Richard C Smith says:

    There are no words that can describe the feeling I felt while reading this update on Jaylans health. I think of Jaylan daily and wonder how he is doing.
    Thank You for sharing this wonderful news.

  • Mary Nelson says:

    Thank you Nicole – beautifully written from a beautiful woman.

  • Cynthia Olson says:

    Nicole,
    I love how acutely aware you are of the many healthcare providers. Your words take us there ~ and give me a sense of the anticipation and the vulnerability pulsating through you that day.
    I love your description of everything from the powerful music to the positive results of the MRI.
    But most of all~ your recognition of all the people who love & care for you and Jaylan.
    Your words are a gift!
    And Love ~IS ~OH ~SO Powerful!

  • Amazing essay. I just read up on Quantum Entanglement for a class I’m teaching to IT students. It feels like the theory that makes quantum computing and quantum decryption possible also should be able to explain the interconnections we have with other people.

  • Nicole says:

    Thanks, Asa. You were definitely the physicist I was apologizing to. :)

  • Jaime Wood says:

    Nicole, this is so beautiful. The transcendentalists knew that we can’t rely solely on science to teach us the truth. Maybe someday science and the known world will catch up to our spiritual, connected reality. In the meantime, yes, this idea must live. By the way, I just watched a Vice special on cancer that seemed almost like science fiction: http://killingcancer.vice.com/. They’re fairly certain that they’ve found cures for at least a couple forms of cancer, and it’s all about genetically engineering viruses to eat up the cancer and leave the body alone. It’s really amazing.

    • Nicole says:

      Thanks, Jaime. I will check out that link. It’s amazing what’s happening with cancer treatment now, and specifically with GBM, the type Jaylan has. GBM has long been known as “the terminator” for its miserable prognosis, and zero progress has been made in treatment methodology in the last 40 years, until right this minute. Gene therapy is on the very near horizon! We just want to survive to experience it, and we have nothing but belief that we will.

  • Melissa says:

    As everyone has said, absolutely lovely, Nicole. Very happy for you two and the good news contained here. The last paragraph is stunning– I reread it two or three times. The line “and we speak of love as though it were a consequence of gravity” slayed me, in the best way possible. I wanted to repeat it over and over and roll it around in my mouth. So good.

  • Kristy Smith says:

    I agree with Melissa. That line struck me too. So deep and beautiful, I can’t believe we share some of the same DNA. You are out of this world good my love! Thank you for your authentic transparency. PS here’s my email ;)

Leave a Reply

Your email address will not be published. Required fields are marked *