One year ago today, I died.
Not a spiritual, metaphorical death, nor the death of a dream, but a true, physical death.
During a major surgery, I bled out and my heart stopped.
I know this because (spoiler alert) I woke up in the ICU the next day. There were more tubes in my body than I thought possible, not just in my nose and mouth, but also in my neck, chest, and arms. Waking up was startling, but Allison was there, a familiar, albeit abnormally concerned face. As Allison tried to calm me down and keep me from grabbing at my tubes, some nurses entered through the ICU curtain. These weren’t the ICU nurses that had been coming in every 15 minutes to check vitals, these were my surgical nurses – the ones who had been with me through four previous surgeries. I was startled to see them because I’d never had a post-op nurse check in visit, and more, because they were sobbing. They wanted to come visit me and to see if I was alive. I listened as they explained to Allison what had happened during the 7 hour surgery.
They explained that one of my tumors, the grapefruit sized one, had fused to my aorta, and when they attempted to cut it out, my aorta shredded and I bled out. They told us about my heart stopping, about the emergency blood transfusion, and about trying to put my body back together. They told us about my main surgeon losing it on everyone in the room, and how he refused to let me stay dead. I wish I remembered more and I’m simultaneously grateful for the grace that allows me to only recall vague details.
I remember freaking out with the energy of someone who is heavily sedated and I remember Allison holding my hand. I remember snippets of the next several weeks; of losing a kidney, of having to use a walker to move, of one of my surgeons showing up every day just to sit with me, even on his days off. I remember a lot of pain and discomfort, I remember a lot of setbacks, and I remember the day we got to come home. But I don’t remember death.
And I know the stories; I know what’s supposed to happen when you die and come back to life. I’m supposed to see a glimpse of heaven and then I get to write a book and speak about it and retire to Asheville with a hot tub that overlooks the mountains. I know I am supposed to return with this renewed purpose, of all of life coming into complete and perfect perspective. It’s supposed to be heroic and inspirational because if it’s a sin to “waste your cancer,” then I can’t begin to imagine the consequences of wasting death. I’m supposed to be overwhelmed with gratitude for my second chance at life like some sort of Ebenezer Scrooge who gets to run into his redemptive Christmas morning.
I didn’t have a “Christmas morning”, and even a year later I barely have running. I have renewed battles with everyday life, with treadmills and yoga mats, with acceptance of limitations, with waiting for the next chapter of post-cancer life to begin. The dilemma with battles is that they sound more victorious than they feel. In truth, what I really have is healing and scars and rhythms of scans and ultrasounds and blood work forever. I have quiet joy and I have lament.
It’s in lament that I have found the clarity of death. It’s in the depth of the overwhelming odds and weeks in the hospital and the painful recovery. It’s in a body that, even one year later, still hurts and functions differently than it was intended. It’s in scars that share stories of survival and it’s in quiet, small victories.
Psalm 77 is (currently) my favorite lament. Read the whole thing, but in verse 19 Asop writes, “Your path led through the sea, your way through the mighty waters, though your footprints were not seen.” A lot of this journey has felt less like journeying and more like drowning. Like the clouds pouring with water, the depths convulsing and overwhelming us. This day a year ago was full of sentences like, “we were just so afraid you wouldn’t come back” and “I’ve been in a lot of surgeries, but I haven’t been more scared then when we lost you.” Today of all days those words echo in my head. There is such a unique grace in dying and staying dead. There is such ample mercy in dying and getting to live.
But there was and is a path through these tumultuous waters. It’s an unseen path but at some point your head breaks through the waves and you gulp in air. And when you look back you don’t see a path. You don’t see a set of footprints. You see the water. You see where you were. You see where you are. Annie Dillard describes it this way: “There is another kind of seeing that involves a letting go. You do not seek, you wait. It isn’t prayer, it is grace.”
When we move through seasons/moments/years of lament, we let go of our control and we wait. It isn’t prayer, but grace that moves us before God. It is grace that we wait and it’s grace that guides our path through the sea. Sometimes we drown and sometimes we get to fill our lungs once again. There is beauty and grace in storms if we choose to see it, if we choose to be fully present in it.
And so today, especially today, I am reminded to be present, not because this is the anniversary of the day of my death, but because I’ve learned this year that it’s in being present that I am led through storms. It’s in being present that we are reminded what grace truly is. It’s in being present that we tell the stories of being led through the waters, of the battles we waged against the waves, of the scars left to remind us that battles can be won and lost. It’s in being present that we truly begin to understand incarnation. It’s in being present that our lament is heard and we get to move through the storm, though the path is unseen, and through the seemingly endless downpour. It’s in being present that we do not find meaning or significance because of our struggles, but are reminded through them of the holy significance that we have always had.
Death is not the end of the story. It wasn’t a year ago, it isn’t today, and it won’t ever be. So take deep breaths of quiet joy, and tell stories of lament. Though the way is unseen, there is grace in every storm.
We haven’t been using the blog much at all as we been moving forward with treatment. We would love to keep you all updated on everything that is happening and for those medical updates, we use our Post Hope website. We have been posting all our updates there so if you want to stay up on all that’s going on, that would be the best way to do it. The latest post can be found here.
For previous entries or if you need to get caught up through March and the latest through surgery in the order it happened, here you go:
That should bring you up to speed. Thanks so much for following along on this cancer journey. We are greatly in need of your support and prayers and are so very grateful for our community. Thank you for being a part of it.
It’s been a cold, icy week for those of us who call Nashville home. Due to something called the “SnowDome” we didn’t get the 3 – 10 inches of called-for-snow, but instead got gifted with a bunch of thick ice that shut our fair city down for 3 days (sidenote: SnowDome would make an excellent sequel to the cinematic sensation that was Bio-Dome, and would introduce a whole new generation to Pauly Shore).
My favorite part of this week’s icy forecast has been social media posts. Ok, that’s a lie. No one’s favorite part of any week should be social media reading. But it has been interesting to read people’s responses to not being able to leave the house for three whole days. Cries and laments of “cabin fever” echoed from my digital friends. At first I tended to agree, but then I got super self-righteous and wanted to yell, “ITS ONLY BEEN THREE DAYS. YOU HAVE NO IDEA WHAT CABIN FEVER IS.”
Since this cancer journey started last fall, I have spent the majority of my time in our house. With my weakened immune system a veritable playground for potential diseases, we took the stern medical advice of avoiding the outside world as much as possible seriously, and tucked me away. Occasionally during chemo breaks, when I had a tinge of energy, I would allow myself the luxury of grocery shopping, but only at random times when stores were sure to be unpopulated. I have quite literally made my mark on my favorite spot on our couch and have worn paths through our house where I walk, usually by myself, because Allison was going to work and contributing to the common good of our society like an actual person while I just sat at home like a tired, weak bump on a log.
Cabin fever – ahem – cancer fever – set in fast and furious. The last 5 months have been nothing but feeling stuck inside by myself. How have I lasted? A few ways I tried to survive:
* I made routines for myself, almost like fake appointments that I had to keep. Ex: “Oh gosh, I have to get off twitter because I have a book meeting at 11 am”. But then I couldn’t even read said book because chemo fried my ability to concentrate – a dark side effect that no one fully explains until you experience it.
* I have watched all of HGTV. Literally all of it. There is not an episode I haven’t seen or a show I haven’t critiqued. And mostly I have determined that I would be a hell of a host on any one of their programs. ESPECIALLY since I don’t know how to do anything around the house (which I maintain would make an even more entertaining show).
* I have tidied our house. Each day is an adventure of hoping something isn’t in it’s spot so I will have the chance to put it away and kill a few minutes of time. I put off washing dishes until later in the day to be sure I have something productive to do.
* I have become adamant that Brooklyn 99 is the best comedy on TV, besting New Girl and Parks & Rec and all the rest.
* I have become familiar with the rhythms of my neighbors, but in a non creepy way. Oh it’s 11:15 on a Tuesday? Ms Janice is bringing in her trash cans right on cue.
But mostly, I spent a lot of time wishing and dreaming that I could fast forward to a time in my life where I wasn’t trapped on the inside watching everyone else live amazing stories on the outside. I’ve been impatient as I have waited for my body heal. And I almost missed out on what it means to wait – to be still – and to learn from the silence. I claimed my discontent was merely cabin fever. When I finally stopped being restless and started engaging this season, I began to see God’s hand at work. It’s not a hand that is holding me back, but a hand that is comforting me and healing me.
I am starting to learn that these days are a time to learn rest, to become familiar with the still small voice that has been trying to speak to me for so long, to let myself feel some deep and tough emotions that I have hidden from by staying busy and productive. These “stuck-at-home” days are forcing me to face myself, which would make most of us antsy and ready to get back out there. And it’s been hard, but it’s good. It’s no coincidence that Scripture is full of stories of people pulling away from the noise of the world to experience God in powerful ways. It’s no coincidence that stories through Scripture speak of God at work come from hospital beds and prison cells.
We have just entered the season of Lent – a season that leads us to a shared meal, to a betrayal, to the cross, and to a triumphant, grace-filled morning. It’s a time set aside for us to be intentional about quiet and going without so our hearts are prepared for the significance of Easter. I love that these ice days have forced us to slow down significantly and my prayer is that we can take full advantage of not just forced stillness, but that we can use these moments to create rhythms for ourselves – rhythms to actually stop, to listen, to hear, to pause. Whether it’s a couple of winter weather days when we’re cut off from the “rest of the world” or an intentional time that you set for yourself, these “off” days can be something of value. Don’t rush or wish away the hours like I’ve tried. Fortunately (and some days unfortunately) I am still stuck learning how to heal. Inside. By myself. One of my prayers for this season is that we can become people who are able to take advantage of these moments rather than run from them, that our cabin fever would become an invaluable opportunity to engage in the quiet rhythms of grace.
Unrelated, if anyone wants to share their Netflix password, that would greatly help with my avoidance of all things deep all the time. Thanks and amen.
We’ve been posting our medical updates through this site: http://posthope.org/buzfeed and this week Allison shared where we are at and what is next. I’m putting the post here because I am grateful for this community of people on the blog and wanted you to hear what was next. Without further ado:
On Friday, December 12th, Adam crossed the chemo finish line! It was an emotional and unforgettable day that you can read more about here.
When people ask Adam, “Does it feel so amazing to be done with chemo?” The answer typically evokes a wrinkling of the eyebrows followed by an oddly hesitant “yes”. In theory, Adam feels incredibly glad to be done with chemo. Chemo is crazy hard on a person’s body, mind, and spirit. So yes, he’s totally glad to be done, but he hesitates and responds with some ambivalence for a few reasons:
1. Adam still feels really bad. The chemo will stay in his system for months, but right now there’s still a lot of chemo in his blood so he’s still feeling very nauseous, achey, and cognizant of chemo.
2. Cancer is a terrible and unpredictable disease. The hope and prayer is that Adam’s done with chemo forever, but the reality is that the next few years will tell that story. It’s hard to not forebode joy at this juncture on the cancer journey.
3. The chemo finish line is really half-time. We’re up at the half, which is amazing. Adam’s blood levels indicate that there is no active cancer! So we pause and celebrate. But we feel like we can’t celebrate too long or hard, because…
…There’s still a whole second half to go. Adam will have 3-4 surgeries over the next few months to remove the tumors that remain in his body, and some of the surgeries are precarious. So, we remain in the tension of good news in the known and anxiety in the unknown.
And we’re back to waiting. We’re waiting for Adam’s body to recover so he can start surgeries. We’re waiting to see if all of the tumors can be safely removed. And we’re waiting to see if the tumors are, indeed, cancer free (which will be determined post-surgery).
So the truthiest truth in this moment is that we’re still scared. We’re not done yet. Please keep trekking with us, praying with us, and encouraging us.
We’re so grateful for our army of people!
A lot has happened since my last post – I’ve done close to 50 more hours of chemo, but have also gotten to take this past whole week off from getting treatment. It’s been a good week with a glimpse into the future of life post chemo. We are currently mentally preparing for this next 40 hour week that starts tomorrow (December 8th). According to the doctor it should be my last week of chemo ever, which is very exciting. It means that we are to the half-way point of treatment and that hopefully, the worst is behind us. Being at the half-way point means that next is several surgeries, and while they can be pretty invasive, they shouldn’t have the long-term, cumulative effects that we’ve experienced with chemo. So Friday afternoon will be a big moment when we should be able to walk out of the chemo room for good. There’s always the chance that in the future I will have more chemo, but for now, Friday is a day to look forward to with some hope.
We have also experienced the beginning of Advent, a season I love. In a season where we are in need of some hope, joy, and peace, Advent couldn’t have come clattering into our lives at a better moment. Advent reminds us that there is something on the horizon, that the days are building to something, and it’s a season where we remember and focus on the hope, joy, peace, and love of the coming of Jesus. It’s a season of expectation that lines up with our deepest longings.
These past several months have been really hard. It seems like we have been caught in months of Advent rather than a few weeks – months of waiting, of expectations, of longing, of delay. And not just in our personal lives, but we see it with the state of our world – the injustice that is seemingly spilling over each day. This year has deeply stirred in me the need for things to be made right – for all things to be made new. Shadows are growing and we need the light to push back on the darkness that feels so present.
In our Advent readings, Allison and I recently read Psalm 13 which starts:
“How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me?”
It feels like our world is groaning with the question of “how long?” How long must injustice be normal? How long until healing happens? How long must we wait for _______? How long until the cries of hearts are heard?
Advent is our reminder that love comes down to rescue and that it doesn’t at all look like our expectations but that healing and love are made complete through wisdom and grace. And so we find ourselves in a season of expectation, trusting that our cries of “how long” are being heard, and that our hope is not misplaced. And that’s needed good news of great joy for this season.
Yesterday I crossed the 100th hour of chemo treatments. I have received chemo treatments for literally 100 hours at this point in my life, and just think, I only recently started this journey. 100 hours is daunting. If we allow ourselves to go all Gladwell-ian for a minute, it means I am still 9,900 hours away from being an expert at chemo. So the good news is that I am nowhere close to becoming a chemo expert. Whew.
And while I’m no expert, I have spent 100 hours of my life having healing poison drip into my body. I have sat in the chair. I have talked to the nurses. I have felt sick. For 100 hours, in the same place, in the name of this cancer.
Things I have learned in 100 hours:
- Allison is a champion. She is the best wife, chemo-buddy, social worker, and care-taker; and there is no way to fully express my gratitude for how hard she is working during this season.
- I like our nurses. I am the youngest patient in our chemo ward by decades. I don’t see a lot of the same patients consistently, but our nurses are there everyday and so we are getting to know each other. I think its because I am kinda around their ages that they treat me so well, but its probably because they like Allison and have to hang out with us so much. Or they hate us and just are really good at their jobs.
- The chemo room is not fun. It’s a big room, broken into 6 sections, with lots of chemo chairs. The patients don’t talk much to each other because it’s so draining, so instead we sit and watch each other go through some of the deepest struggles we will face in this lifetime. It’s a surreal spot to spend a lot of time. The only highlight that everyone talks about is the snack stash for anyone interested (I am not).
- My head is fairly normally shaped. I was real worried going into this whole chemo/hair-loss thing that I would have a lumpy head, but it turns out my head is fairly proportional so at least I’ve got that going for me, which is nice. I’m grateful for the hats I have been given to keep my head warm, they are invaluable some days, so thank you.
- I can’t read during chemo. You would think it would be an ideal time to catch up on all my reading but the medicine does not lend itself to mental focus. I read the same page in the same book like 4 times before I finally just put the book down. I can’t remember things either. Chemo-brain is real and it would be amusing if it weren’t a hassle. I wish I could regale you with stories of the funny things I have forgotten, but alas, the memories have lapsed.
- Your words mean a lot to me. I know I can’t respond quickly and I can’t really hang out, but the fact that you remember us and reach out means the world. So even if I am slow to respond and don’t have the energy to hang out in person, please keep saying hi, reminding me that you’re praying, and sharing funny jokes.
As it turns out, it’s not the 100 hours of chemo that are the hardest; it’s every other hour of my days when healing is fighting to take place outside the hospital. Healing is a slow process and the in-between chemo moments are just as valuable as every minute spent in the chair. But the in-between healing feels really slow.
Right now, I can’t do much of anything. My doctor has set pretty strict boundaries about what I am capable of doing (physically and emotionally). My full-time job is to focus on healing. Because of the intensity of my treatment, I have been semi-quarantined. We have been highly cautioned against being in groups of people because of the risk of germs, especially during sick/flu season – which means most social events and most public places (including church) are not an option for me. The isolation makes me feel a little withdrawn.
Things I’m learning in the in-between hours:
- I’m learning to be grateful for the process of healing; even for the moments of being home and feeling sick, of feeling tired, of feeling nauseous, of feeling restless and and of feeling defeated. This is all part of real healing.
- It’s hard to be present when I don’t feel good, but I want to be. And I’m learning how to celebrate small victories; for moments of feeling okay, for short visits from friends, for messages and texts that keep me going.
- The in-between time is teaching me about sabbath. Rest is hard – real hard. But even in the midst of cancer my doctors have built in moments of rest for my body even though it feels more like a reprieve. Reprieve is a probably a good word for Sabbath anyway.
- In the midst of this, in the midst of feeling like I can’t do anything, I’m learning more and more of what it means to be dependent on the process of healing.
- And more than anything, I am learning to just be. I can’t accomplish anything right now. I can’t do much for other people right now. I can’t feel proud of doing. So I am just learning to be. That’s harder than it sounds.
And so, I will keep being and I will keep healing. For 100 more hours.
A lot can happen in a fortnight.
Two weeks ago today we found out my diagnosis of cancer, and to be honest, I am not sure we have fully wrapped our heads around the significance of it all. Everything had to happen so quickly with starting the intense chemo treatment almost immediately, that now it seems crazy that it was only 14 days ago that all of this began.
The two weeks have been filled with anxiety, discomfort, sickness, the chemo room, and an overwhelming sense of community and love that I will spend the rest of my days retelling. Stories of love, grace and compassion that have come from people near and far have blown us away. Allison and I knew that we were going to need people to be beside us if we were going to make it through this and the way people responded has been extremely humbling and borderline overwhelming in the best way possible.
Thank you for your support, for your encouragement, for your prayers, for your messages, for your stories of conquering, for your cards, for your meals, for your gifts, for your texts and visits. Thank you for your understanding when responses have been slow or we’ve indicated that we need a quiet day of no visitors. Thank you for the graciousness with which you have walked beside us as we deal with the physical and emotional effects of treating cancer.
One of the side effects no one prepared me for was hiccups. And not just hiccups, but “remember that girl who was on the Today Show because of her hiccups” hiccups. Hours of annoying “chemo” hiccups. Turns out it’s an uncommon side effect. So glad that we are keeping the uncommon going. Ever see a grown man hiccup for hours? It’s uncomfortable for everyone. I sound like a disney character that swallowed a bunch of bubbles. Who knew.
One of the other side effects has been my hair. The anxiety and waiting for it fall out in clumps this week has been one of the harder aspects emotionally for me, so instead of just waiting, we went ahead and buzzed it. My glorious locks hit the ground rendering me to the look of a naked sheep, freshly shorn from his wool coat – cold, confused, and slightly exposed. We tried to make a video of it but it didn’t turn out that great, but even still, you can see it here.
I’ve been thinking a lot about the seasons changing as October has finally relented into autumn in Nashville, with the temperatures dropping and the leaves falling, cascading in their wayward manner to the hardening ground. If I had to pick a season to be diagnosed and begin treatment, I think it would be the start of fall. Fall has always been a symbol of change, and while the beauty of the season is not lost, we know that fall leads to winter and in the season of winter is where deep roots are entrenched, where trees and plants regroup, where healing can take place so that when the time comes they can grow stronger and more vibrant than before.
Winter is a necessary season, and we don’t want to hibernate through this. So that has been one of my prayers – that during this time that deep roots would go further, that healing would take place in every aspect of life and that when the time has come at the first hint of spring and new life that there will be such an overwhelming joy and expectation and understanding as we look back on what could be seen as a barren season, we will see the depth of life that is fully life.
(For more updated and tangible ways that you can help out or stay connected, feel free to check up consistently here. Thanks!)