The One Question I Refuse to Ask

Since the beginning of February, when all these cancer shenanigans started, I have sat through countless medical appointments and encountered at some point nearly 100 practitioners. Between neurosurgeons, neuro-oncologists, nurses, hospital staff, rehab specialists, and second opinions, there is one question I have refused to ask any of them. And I’ve asked a lot of questions in these appointments, make no mistake. I could scroll through the pile of questions I have saved in my phone for quite some time. In one of the appointments I had with the neurosurgeon, I made a point to ask him, “Are there any other questions that we need to be asking that we aren’t?” He hung his head and chuckled a little bit, and he said, “No, of all the patients that I’ve had, I think you’ve been the most thorough in asking questions.” Thank you, I will take that as a compliment.

Friends and family have asked me that one question, but I refuse to ask any practitioner myself. The neuro-oncologist I saw for a second opinion voluntarily offered it up, but the answer is blacked out in my mind and I genuinely can't recall what he said. I'm sure I probably came across the answer when I was doing early research right after the initial diagnosis, but if I did, again, I have no memory of it. Even my own brain refuses to absorb the answer even when blatantly offered. I think it's trying to do me a favor in this instance.

What's the prognosis?

Which is a well-masked way of saying, "How much time do you have left before death comes for you?"

And here's why I don't want to know and why I refuse to ask, and it's surprisingly not out of fear (not entirely anyways):

Whether 10 days, 10 months, 10 years, or I live to be 100, it doesn't matter how much time I have left because I have been living life all along with intentionality. If the end were to come soon, there's not much I'm leaving undone. 

If a friend needed something or I wanted to see them to catch up, I got on a plane and I flew. I got in the car and I drove. Missouri, California, North Carolina, South Carolina, Indiana, Illinois, Minnesota, DC, it didn’t matter. I picked up the phone and I called, texted, or emailed. I've invested hundreds of dollars in postage over the years, sending cards and packages to friends because I wanted them to know they mattered to me, that the details of their lives mattered to me.

If I wanted to travel, I made plans and I went. Kenya, New Zealand, Russia, Guatemala, New Caledonia, Alaska, Jackson Hole, it didn't matter. I figured out how to make it happen.

If there were family functions or gatherings, I aimed to be there. When each of my nieces and nephews were born, I started a journal for them, writing letters to them throughout the years as they grew up. I gave three of my nieces, who are now almost teenagers, their journals last year, scattered with letters I wrote to them and copies of playbills from ballets, dance recitals, and musicals they had been in over the years.

If there were needs at church and I could meet them, I offered to help as best I could, maybe to my detriment at times.

I unintentionally set out to live an intentional life. 

And I'm not offering these examples up so you will hand me a gold star and a pat on the back, but to merely illustrate my point.

I first saw it modeled among my peers in college. (I'm looking at you Cru friends. You know who you are.) And I saw it modeled in the woman who mentored me the last two years of college. (I'm looking at you, Debbie, and all the other women you recruited along the way to care for us college kids.) I saw all of these people love well, serve well, lead well, date well, marry well, and invest in others well, and I saw them chase hard after the heart of God. Not perfectly, but certainly intentionally. I followed them as they followed Jesus. 

These people weren't sitting on the sidelines waiting for others to move toward them first. They determined they would be the ones to move first. I remember my friend, Cassie, saying one time, "I can't wait around for others to make the first move." Meaning we have to spend our lives perpetually moving toward others, rather than waiting for them to move toward us.

I wanted what these people had, even if I didn't necessarily have conscious words for it at the time, or make a deliberate choice about how to live life. I didn't have angels descend from on high or have God give me some grand plan for my life in a dream. There were no five-year, ten-year, or twenty-year plans I had plastered on a glorious vision board. Because, clearly, my entire life blew up in the span of five days this past February. Forget five year plans and forget vision boards. Life never goes the way you think it will.

I saw it in the quiet living, day in and day out, of those peers running beside me. 

And that was a life of intentionality.

Which is why I say I unintentionally set out to live a life of intentionality. I saw it in action in those around me during very formative years in my early 20s.

So, now 20 years later, when I'm asked What's the prognosis for your life? I find the question to have little relevance or bearing on how I will live the remainder of my life, however long that may be. Besides, I'm pretty sure my God is sovereign over my doctors, so they can rattle off whatever prediction they want about my time left on earth, and God can prove every single one of them wrong. That's also why I take the answer to the prognosis question - whatever that answer may be - with a grain of salt. Because nobody knows what the future holds, and putting "MD" after your name doesn't make you "M-Deity."

Now, here's the disclaimer to all this: I realize my singleness has afforded me a high level of flexibility. I'm neither married, nor do I have kids. So, I can pick up and go whenever I please. But yet that is another one of those factors God set before me. God, in his infinite wisdom, has ordained I spend the bulk of my life single. Maybe not forever, but for now. (But what the hell does dating look like anyway when you have a life-threatening illness?!  “Hi, want to go out sometime and have some shots of hard liquor so I can forget I have cancer for a few, despite the fact that I can’t actually have alcohol because of the nine different medications I’m on, one of which is highly toxic? And feel free to call 911 if I have a seizure and lose consciousness. But if I don’t lose consciousness, just call my parents. Oh, and I can’t drive because of these seizures. So, can you pick me up and take me home? And can you have me home by 9:00 so I can take all of these toxic meds? If I order anything resembling chicken or steak, I’m gonna need you to cut up my food because I’ve got this left arm that is a bit disabled. Sound good?" Line disconnects from the other end ... I’m pretty sure that’s a movie Hallmark will never produce.) I have spent the better part of my adult life single and I wanted to be intentional about not squandering that. I haven’t been sitting on the sidelines waiting for a husband to make my life more meaningful or purposeful. I saw this modeled well in my peers, many of whom are indeed married now. But I still watched them do singleness well when they were single. I also watched some friends despise, resent, and rail against their singleness, and I knew I wanted nothing to do with that version of singleness.

I remember coming across a quote sometime in grad school that I took to heart deeply. No clue who said it or where I came across it first, "Between the wish and the thing, life lies waiting." Meaning, between us wishing for something, let's say marriage, for example, and it actually coming to pass, there is a span of life in that gap waiting to be lived. If all we do is navel-gaze and resent that gap, then life will pass us by without us even realizing it, and then we will have squandered that gap. The same could be said of waiting for retirement, waiting for kids, waiting for a promotion, waiting for a house, or whatever else we spend our lives waiting around on.

I did not want that to be true of me.

So, the alternative in my mind was to live with intentionality. 

If you do know the answer to the question what's the prognosis? for an oligodenroglioma, grade 2, don't tell me because I don't want to know. Don't leave it in the comments, don't text me, don't send me the link to some article. If you see me in person sometime, don't work it into the conversation.

Because my intent of living with intentionality until my dying day hasn't changed. It's maybe been disrupted and it requires far more energy, but it fundamentally hasn't changed.

Life lies waiting, even amidst the prospect of death.

______________________

Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

My chemo pills arrived on Friday, and I will take my first ones tomorrow night. My first radiation appointment will follow on Tuesday afternoon. The hard work continues of having to trust God. I wrote on a 3x5 card and posted it in my bedroom: "God is sovereign over my doctors. He is sovereign over my medications. He is sovereign over my body. He is sovereign over all my days." I also posted a card with a quote from my coworker, Tammy, "Even when cancer feels like a full-time job, we have a full-time God." These are things I have to continually bring to the front of my mind, otherwise I drown in the fear and anxiety of the unknowns that are yet to come in the weeks and months ahead.

I have found that the early mornings are best for me motor coordination-wise in my left arm. That's when typing is easiest. It's still not fluid, but it's at least a little easier. I'm having to get very clear about what is most important to me in the course of the day and prioritize accordingly. This podcast featuring an interview with a woman named Suleika Jaouad was tremendously powerful for me. It echoed so many of my own thoughts. (Thank you Jennifer O. for sharing with me). After Kate Bowler, Suleika is my new favorite human being. My sorority sister, Kristina, who's been through three rounds of cancer herself and has been a tremendous guide in my own story, sent me a copy of Suleika's book Between Two Kingdoms. I'm not very far into it, but it has already resonated profoundly.

I appreciate your continued prayers as I take it one hour, one day, at a time. I will be forever grateful for the ongoing support I have received from friends, family, and co-workers. 

As I noted in my last update, communication will be spotty in the coming weeks, depending on how I feel starting radiation and chemo. Hang tight as I get my bearings.