I wake-up early and sneak out of the dark hotel room. I make my way to the lobby to enjoy the complimentary coffee and read my book. If I position myself just right on the couch in the far corner I can be surrounded so completely with eclectic decor that I almost forget why I am here.
I read a couple pages of Between Two Kingdoms and feel the tug back into reality, the exact opposite of escaping in to a book. A woman who went through cancer and transplant at the young age of 22 and writes to document everything it means to survive the unsurvivable and then wonder what will come from the ashes. I read a couple of pages and arrive at this quote:
“Healing is figuring out how to coexist with the pain that will always live inside of you, without pretending it isn’t there or allowing it to hijack your day. It is learning to confront ghosts and to carry what lingers. It is learning to embrace the people I love now instead of protecting against a future in which I am gutted by their loss.”
Suleika Jaouad, Between Two Kingdoms
I stop reading and watch as a group of business travelers fill-up on their morning coffee and joke about the casual business dinner that ended in a later than expected night at the Irish Pub. I look at them and wonder what each one of them is healing from.
I think about how they may look over and notice me, reading on the plush, ruby-colored, velvet couch in the corner nook, wall-papered in shades of emerald green. What story would they make-up about why I was here? Would they realize I was sitting in this lobby, trying to play make believe that I was a foot loose and fancy free 30-something enjoying a morning coffee and some reading time, but that was only, at best, a half truth. Would they realize that I had to set down my kindle because the book I am reading is so raw and real for me that I am holding back tears? Would they know that this entire damn city is a constant tug of war between hatred of cancer and gratitude of survival?
I exchange my kindle for my phone and reply to a text from Lorin. She had texted earlier, “Appointments today, right? I almost forgot. But I woke-up thinking about you and saw you are in Philly.” Our bodes remember before our minds do.
“Yup, Appointments today…I hate that Philly has to be part of our (you and me) journey and that we’ve been burned by the statistics that reserve success to a handful.”
Hot tears fall down my face. My body feels the ache. The tug that no matter how Beau completely survives, Emily didn’t.
Healing is figuring out how to coexist with the pain that will always live inside of you…
“I’ve always hated what this city represents to our babies, but without Emily it feels even more cruel… In other *LIGHTER* news, Jude had the best fish tacos of his life last night. That kid. Loves so hard.”
…without pretending it isn’t there or allowing it to hijack your day.
–
I return to the room to get the boys ready. Jude wakes-up, pissing vinegar that we have to go to the hospital. The vibe feels so counter to the ‘best life’ he lived up until his eyes closed last night that I am confronted with two options. One: yelling him in to submission, “Yes! Yes! We have to go to the doctor, Jude! It’s not all rainbows and butterflies, and BEST fish tacos, Jude! This is hell, Jude! Get on board, Jude! What the crap did you think this trip was for, Jude?” Two: figure that if he doesn’t want to go to the hospital, he doesn’t have to. I can leave him at the hotel, he can inhale Sponge Bob, and Beau and I can do our thing.
I, for the benefit of everyone, go with option two.
–
I tell Beau he can wear his Chiefs jersey, but only at the hospital- walking around the city he needs to wear something else. I haven’t a clue what the characters on the Philly streets will do to a preppy white boy wearing a Chief’s jersey the week after the Eagles loss in the Super Bowl, but I tell Beau that this isn’t the time to find out.
“I bet no one will even notice,” he pushes back as we get in the elevator to leave.
“I’ll bet ya ten bucks that they will.”
“I’ll bet you 10 minutes extra game time each time someone notices,” he counters.
The stakes are turning sideways, but I am not in the mood to bicker with him, “Great.”
We get in our Uber and start our trek across the sleepy city. “Chiefs, eh?” The driver says, “I should drop you off right here!”
“10…” I whisper to Beau, who rolls his eyes at me.
–
The radio plays a local hip hop station and I laugh at the radio-edit of whatever song is playing. I zone out, thinking back to the Uber from our last visit and how the driver played Wiz Khalifa, very much un-edited, and how the lyrics left Beau asking all sorts of questions which were very uncomfortable to answer in front of said driver.
“I just think your doctor should be on that list!” Beau said, staring out the window.
“Huh? What list?” I am tugged back to the present.
“The list,” he points towards the radio. “It said, ‘There are three people you should be absolutely certain about: your plumber, your barber, and your accountant.’ And, well, I think your doctor should be on the list!” He says without looking away from the city passing through the window.
“Oh, yeah…A barber. That’s funny, like what would a bad barber get you, but a bad haircut?” I reply.
“Right, but a bad doctor…?” He drags his pointer finger across his throat with a slicing sound.
Thankfully, we don’t have a bad doctor. In fact, we have what some would consider the best doctor team in the country.
“Good thing you got the best,” I say.
“Good thing.” he replies and the words linger longer than most.
–
The Uber drops us off outside the Burger Center and we walk through the double doors.
“The chiefs! Oh! ok! I see how this goes!” The security guard throws his hands up in mock defeat and walks away, joking.
“20…” I whisper to Beau, he smiles back.
–
–
At our appointment, we always see one of the handful of doctors on the CHOP CAR T team. Today, we get the best. Dr. Maude is a leader in the CAR T field, and heads-up much of the research at CHOP. You’d be hard pressed to find a research article published on CAR T without her name among the first authors. She walks into the exam room and I feel the pull inside me, a feeling of celebrity as she introduces herself, again (we’ve met her a handful of times over the last 2 years) and an opposite pull towards reality- this is Beau’s team, this is our mundane life.
She asks how things have been.
“Rather uneventful,” I reply- which is true, but something inside me tightens like I am being dishonest. Am I being too chill? It is never uneventful to be inside the mind of a cancer parent, but I feel like I have nothing medical to tell her. So I just leave my reply as it is even though it feels like a half truth.
“So… he had a LP last week,” she says reading from his chart, “That was clear… Tell me about that,” she asks. And what she means is, ‘Why did you do a procedure we told you was not necessary?’ Or maybe she just means, ‘So, he had a LP last week. That was clear. Tell me about that.’ I can never be sure.
I fumble through an explanation that feels something between being caught in a lie and trying to defend my honor and finally finish my rambling with, “So, yeah. It was clear.”
She asks how many more times we plan to do that, and I spend a beat too long trying to assess if there is a tone in her voice.
“Not any more, no more.” I concede and again, I can’t tell if I am embarrassed or assured.
We don’t have our normal nurse today, nor our normal care coordinator, and these small things mean kind-of everything and almost nothing, at once. Because who cares which twenty-something walks you from the waiting room to the exam-room, and who cares which fifty-something sits at the computer and takes notes while you and the doctor converse.
The conversation turns to Beau’s recent 14-day sinus infection. I shrug as I explain that I held-off on antibiotics. Immediately, I feel the tug. I wonder if our care coordinator would have given me a knowing look, instead of the inquisitive one I get from this care coordinator. And when she says, “Well, sometimes kids need antibiotics for a sinus infection, you know?”- well, if it had been our care coordinator, I would have known what she meant by “you know?” Because obviously I do, indeed, know. So if it had been our care coordinator, I wouldn’t have made the air thick with my reply of “Right, but he didn’t, because he is…fine,” while gesturing coldly to a child with, clearly, no sinus infection.
The air is thick as we play an unspoken tug of war I’ve played many times with Beau’s care teams: who knows more about what Beaudin needs. I play, but I hate the game, every time. This care coordinator is taking down notes in myChart that I am sure I could read later and feel unsettled by. “MOP (mother of patient) declines ABX use for prolonged sinus infection.”
Once, years ago, I stumbled upon the “appointment notes” while looking for lab results. I thought I had been having a casual catch-up with Dr. Zach, but it turns out he was taking notes on every single word out of my mouth. “MOP believes public schools are incompatible with learning. MOP plans to homeschool. MOP unclear on her curriculum.”
And since I hadn’t said HALF of what he’d written down, I decided then and there that nothing a doctor asks can be trusted with an honest answer. They aren’t listening to learn, they are listening to document. And unsure what case they were building, I wasn’t going to help.
Half truths and tug of war.
–
“So he is feeling better?” Dr. Maude interjects, separating two sparing siblings.
I toe the line. I am absolutely certain about the doctor’s knowledge of CAR T therapy to treat relapsed preB cell Standard Risk ALL…and I also don’t trust them as far as I can throw them when it comes to dosing antibiotics for a sinus infection that resolved on it’s own. Antibiotics they hand out like candy, with no conversation about their repercussions.
“Much.” I say curtly and we move on.
We agree we will start testing Beau’s ability to make his own immunogobulin this spring, once cold and flu season has subsided.
“Sometimes if we allow the body to get to a low IgG level, it will be spurred on to produce it’s own,” the doctor explains.
Tug.
I want to dig in about what she is saying. I want to mention how after his b-cells started coming back a year ago, I specifically asked if dosing IgG would keep the body from doing the work on it’s own and how everyone told me no, how dosing IgG had no affect on the bodies own production.
Tug.
And, well…it feels like what she just said is the it does have an affect.
Tug.
I want to clarify the half truth- does dosing IgG affect production or not! But I already made things thick with the antibiotics conversation and I really don’t feel up to more tugging.
I ask if there is any new info from the CAR T world that would make sense for us to know. There is and there isn’t. The science is always moving forward, but as Dr. Maude eloquently explains, “We have to hold loosely to all of it,” so that they don’t force a path from bias.
“It’s the same for me,” I laugh, knowing that comparing parenting a cancer child to leading innovative research in a cancer field is scarcely the same, “Holding it all loosely. Last night, Beau made a joke about his poop and I launched in to a full interrogation about symptom onset. Turns out, he was just kidding.”
“Can’t a kid make a poop joke!” Beau interjects, looking up from his iPad for the first time.
Everyone laughs and for a moment we all felt on the same side of things.
“So, I know you can’t say, exactly, but like, what is the timeline here? Speaking of holding all things loosely, I’d like an exact date,” I say in a voice so serious that everyone knows I must be kidding. “We have established that we have no idea what’s coming, but, like, when do we….well, gah, I don’t know. When do we rest?” I am blabbering, but I have a point and Dr. Maude excavates it.
“We know that 6-12 months of surveillance is associated with the best outcomes. Beau didn’t have that. We also worry the most over relapse in the 3-6 months that follow the cells fading (that would have been Dec 2021- April 2022). Beau didn’t have that, either. So,” she speaks methodically, “ I think it’s fair to say he is 12-months out from any cell persistence, and 18-months out from his last treatment (HuCAR T, August 2021) and that puts him in a good place.”
“Knowing, that anything can happen?’ I hedge.
“Exactly.”
We speak in detail about how much is unknown about why CAR T works for some kids and why not for others. She affirms that our decision not to move forward to transplant made sense because as more kids move through the CAR T process and they have a bigger data set, more kids without the ‘ideal persistence’ remain cancer-free. I tell her I know that Knox is still cancer-free and that helps, but that (Sweet) Emily is gone and that makes all of this so unclear.
“Well, and you have to remember that not every story is his story,” this care coordinator gestures to Beau and she is trying to help, but the words ooze with trite sympathy. She is reminding me in the same way everyone does. When the story ends well, “Oh look! It’s possible for Beau! Dont get down!” and when the story ends poorly, “Don’t over-think this happening to Beau! His story is unique!”
Fair weather sympathizers. The worst part of cancer support.
I want to reach over and break her gesturing fingers. I am suddenly full of rage because I FUCKING KNOW THAT NOT EVERY STORY IS HIS STORY BUT I ALSO KNOW WHAT IT WAS LIKE TO WATCH SWEET EMILY’S DADDY WAIT OUTSIDE THE FIRST BAPTIST CHURCH WITH THE SHARP WHITE STEEPLE PIERCING THE BLUE MISSISSIPPI SKY AND GREET PEOPLE AT HIS BABY’S FUNERAL AND SO, DON’T REMIND ME BEAU’S STORY IS DIFFERENT. I LIVE WITH THE TUG OF THE GIFT & THE GUILT OF HIS SURVIVAL EVERY. SINGLE. DAY.
“It is learning to confront ghosts and to carry what lingers.”
My face is flushed, I can feel my cheeks are red and my eyes sting as I try desperately to hold back the hot tears. The conversation pauses as they give me space to regroup from what they consider to be my emotive response to this care coordinator’s “kind words.”
“Yes, no story is the same,” I repeat back gently as my insides burn. I’m staring in to the middle distance and thinking about how thankful I am that Lorin replied to my text this morning, “I fully expected to feel some sort of jealousy, and I don’t, not one bit. I can’t really explain it. I am truly happy for you.”
There isn’t a whole lot more to discuss and Dr. Maude has already stayed longer than I expect her schedule allowed for. I use the hot-tear pause to tell her that I am, really, thankful for them letting us “wait and watch” with Beau and not pushing us to transplant. I break the tension by leaning over and ruffling Beau’s hair and saying something like, “Keep this kid off the transplant list as long as we can.”
We leave the exam room and I wonder why I am so angry at this care coordinator. In the hallway, I can see it in front of me, oh right, the stages of grief. Lately, it feels like I am moving through them anew.
Rage.
We make the final turn towards the elevators and a familiar male nurse sees Beau’s chief’s jersey and yells after him, “Oh, COME! ON! BEAU! You’re killing me dog!”
“That’s 30…Bam Baby…” Beau whispers under his breath and in that moment I am not sure I have ever loved him more.
It is learning to embrace the people I love now instead of protecting against a future in which I am gutted by their loss.
We walk out of the Burger Center and I can feel in my body that I am disregulated. It is so standard to feel this way leaving clinic that I almost don’t notice. But I am trying. Trying to see that clenched fists and a tight throat, and so.much.anger is a response. A response to grief, to fear. And to bottle it up, to “pull it together” does nothing for me, actually.
So, I am trying. Trying to let it through me.
Beau hops back and forth over the concrete spheres on the sidewalk as we wait for our Uber and I take the fullest, deepest breathes I can muster while speaking very quietly, but aloud, what I know is true.
“Today, we are here. Today, we are whole. Today is the gift.” I repeat slowly after each exhale.
Beau hears me, but doesn’t say anything.
Our Uber arrives, but the driver doesn’t unlock the door. I knock on the window and gesture to the back. He shakes his head and cracks the window, just barely, “Nope! No chiefs fans!” and waits just a second, then cracks a wide, toothy grin and I hear the door lock click open.
“Yesssss. 40 minutes, Mom! Today IS a gift.” Beau lands hard on the back seat and throws his head back and laughs.
The Heavy Wait 