Complication, Confusion and Peace
Treatment - Day One
Dear Friends,
First things first, How grateful we are for the outpouring of wonder. A few posts back we asked for people to share their stories with us - We need to know, we said, that you are receiving the gift of today with a holy "Wow!" We need to hear how others are receiving and savoring the freedom that comes from accepting what is with an honest yes, rather than lamenting what is not.
The response has been so beautiful and encouraging. I am trying and failing to respond to every story, to every photo, to every wow! Please know how much we have cherished every single response. Every. Single. One. Thank you for your patience. There is so much love being offered in these stories, and we are drinking it up.
We are hoping to figure out how to to let you share your stories publicly (but only if you want to.) It seems a little selfish of us to keep all of them to ourselves.
A lot of people have been asking how I feel about starting radiation and chemotherapy after having been diagnosed with brain cancer just over a week ago. Enough people to take the question seriously and to believe that it might warrant a response. I’ve been telling people it’s complicated, but then wonder if I sometimes say it’s complicated when I really mean I’m confused. Or both.
Let’s start here - with this feeling about feeling really great. Aside from hitting a hard fatigue wall most days (which might be perfectly normal, actually - perhaps you have the same experience most days), I can’t really put my finger on any lingering symptoms that concern me all that much. I was off pain meds within a couple of days after surgery. I am walking quite a bit. My balance is poor to middling, just as it has been for decades. I attend church and go to lunch with friends. I still get excited about Ohio State Football and get irritated angry when our new quarterback misses open receiver after open receiver or a when an offensive lineman doesn’t get to the second level on a zone read. And the only thing keeping me from getting back on my bike is my doctor’s concerns about the consequences of having another seizure in the middle of a ride. But even she tells me that another seizure is highly unlikely now that the tumor has been removed and I am taking anti-seizure medication. Without chemo and radiation, it’s likely I’d be back on the bike before December.
So outside of the fatigue, there is a whole lot of delicious normal, and had I not had the seizure, I would likely have a very difficult time believing my diagnosis at all. I have never seen the cancer with my own eyes, but only the bright spots on a screen that indicate where the contrast is accumulating during MRIs. My surgeon tells me he has seen the tumor and will describe it if I ask, but again, it’s all second-hand info for me, and I tend to be a show-me/first-hand sort of guy. Even the pathology report seems far removed from my own experience. It uses scary words to describe something that seems rhetorical. Theoretical. Grade 4 glioblastoma sounds terrifying, especially in a sentence with my name in it, but how can I know, really know, that sample came out of my own brain? So I doubt. I believe, but I also doubt.
And as irrational as that doubt might be, the prospect of taking medication that will almost certainly make me feel worse, that will exacerbate the fatigue, that could result in more brain fog and pluck out my hair and deposit it on my pillow overnight, that could invite nausea into our daily lives, that could completely change the direction not only of my life, but the lives of those I love - all of these things to treat something I have never actually seen or heard or felt or tasted…well, it’s hard to wrap my head around.
Yet doubt, even irrational doubt is not the same thing as rejection. I’m looking forward to treatment. It has the aroma of hope. I believe it will help.
Do I contradict myself?
Very well then I contradict myself,
(I am large, I contain multitudes.)
It’s complicated. Or confusing. Or both.
Neither radiation nor chemo are new to me. I sat with my Abi for hours and hours at Virginia Oncology Associates. There were so many rounds of chemotherapy that I lost count long before she chose to stop treatment. But there were a lot of rounds. Enough rounds that Abi eventually broke through the protective shells of even the nurses and patients and doctors who guarded their hearts most diligently, all of them eventually unable to resist her invitation into the intimacy that one can find only in the thin space of an infusion center. And the air is thinner there than any place I’ve been.
Even though she was only twenty-seven, Abi became a sort-of-mayor at the VOA Radiation Oncology department - on a first name basis with the receptionists and the techs and the patients who would come for a few weeks before ringing the bell while she continued treatment after treatment.
So in many ways, I know this path. In a way, it feels like Abi cleared it, marked it, and even showed me the secret blue blazes that led to the most spectacular overlooks. I was privileged to be there with Abi for most of her treatments, believing I was holding her hand, but realizing, now, that she was the one doing most of the holding. Showing me what I might someday need to remember. I am beginning to realize that I didn’t quite see everything she tried to show me. I was never the patient. I was always the caregiver. And the views are not quite the same.
I had thought that perhaps because I had walked this path before, I might be the guide for those around me. But just as a trail looks completely different in the winter than in the spring than in the summer than in the fall, so too this trail looks different than the last time I walked it. And I don’t always recognize what I am looking at, and sometimes I set out boldly on a path only to find I need to retrace my steps and start over.
I’m coming to believe that maybe I don’t need to lead or guide at all, but instead my job is simply to walk alongside those who are willing to walk alongside me. There is some anxiety with the reluctant understanding that I am not quite sure where this particular path is leading, but also freedom in unknowing - of being asked simply to take the next step and to trust my foot will land on solid ground, and to see there are people walking with. Being with.
Complicated. Confusing.
Definitely Both.
Finally this. Here is how yesterday went down. I spent the morning, like most mornings reading and writing and feeding sourdough and being still and praying and noticing a blue squirrel trying and failing to raid the bird feeder and realizing that squirrels, like leaves, change color in the fall and wondering how I had never noticed that before and wondering what other mysteries are hiding in plain sight.
I walked with two friends and two gigantic sheep-a-doodles around a neighborhood. One of the friends, when I asked, graciously shared what he had discovered during his own cancer journey and what he had discovered in the years since he got off the trail - each of the discoveries difficult and helpful and full of hope in the ears of someone who is just beginning the walk.
After the dog-walk, the other friend drove me to Massey and we talked about the hard and the beautiful things in her life - often the same things, as it turns out. It had been a while since we had spoken together like this, and the drive to MCV didn’t last nearly long enough - even though there was traffic on 64…because Richmond. My friend sat with me in the waiting room and visited with my niece who just happens to work in trials at Massey and who noticed that I was on the schedule and made the walk from a different building just to say hello and to tell me she loved me. My friend was waiting for me when I came out of treatment with a glass of cold water. Such grace.
We left the hospital and met Kathryn at a restaurant in the fan that was serving happy hour margaritas and spicy salsa and I watched the two of them talking. I couldn’t tell you what they discussed, but maybe you know the incredible privilege of two people who have known each other for so long inviting you to listen in on an intimate conversation, and all you hear is the love being spoken, even if you can’t make out the words. And if you don’t know this privilege, I’m sorry.
Finally, after a pre-chemo haircut (which seems to be a thing) - Kathryn and I finally got home, and we prayed together and I took my first round of chemo pills - the pills that I am supposed to swallow without allowing to contact my skin because they are hazardous. The pills that will likely change everything.
And then we went to sleep and peacefully,
In the middle of a sea of stormy contradictions and paradoxes.
Just like the night before.
And almost certainly how we will fall asleep tonight.
Life has changed completely.
Life is just as it has always been.
Complicated. Confusing. Beautiful.
I wonder if you are willing to share more stories. Stories of contradiction and confusion and beauty. And if you dare, how you see God’s love there.
Oremus,
Chris and Kathryn
Hmmm, stories of complication and beauty... That phrase seems to communicate the complexity of life that humans in general try to avoid at all costs. We like to tend to just one side or jump between those two extremes, not knowing how capable we are to hold space to feel it all and all at the same time and how the beauty of tears falling because of overwhelming love and awe are actually made sweeter in some ways when they're also mixed with tears of mourning and sorrow. It feels complicated and beautiful today to feel my heart yearning to send comfort and hope to a complete stranger on the other side of the country. Sending it all.
When I was really young - maybe too young? - I read a little piece in People Magazine of all places about the power of thought in healing. The story was about children in cancer treatment, and a study that had been done where the children had been instructed to imagine fighting their cancer cells like they might fight a bad guy in a video game while they were receiving treatment. It worked. For some reason, I remembered this on Thursday morning so instead of my morning rituals, I sat with my coffee on my couch and imagined fighting yours. I guess maybe this is a kind of prayer - just video game style. I hope it works.