Scenes from a Marriage

“Babe? Will you come in here?” Chris was sitting in the middle of the couch in his office. His right arm stretched out along the back of the couch, and he was reclined somewhat against the back cushion, his swollen belly giving him little flexibility. “I’m having shortness of breath. It was worse when I was lying down last night. But I still feel it.” I crouched in front of him and asked him questions about what he was experiencing, if it was scary. “Babe, I think we need to go in,” I said. “Shortness of breath is one of the things we’re supposed to look for.” He said, “Really, my body hasn’t been doing what it should be doing for weeks now,” and I nodded, agreed: “No, it hasn’t been.”

Chris then paused for a moment and looked away. “I hate it when you talk to me like that. With that voice. You make it sound like you know everything that’s going on with me, and you don’t. I want to feel like you’re next to me, walking with me.”

I paused, staring at him. “I’m sorry you feel that way, babe. I don’t want you to feel like I’m looking down on you or analyzing you. I want you to feel like we’re together. I’ll do my best to be careful how I say things.”

Chris looked up at the ceiling and said tightly, almost as if to himself, “You don’t get it. I can tell you don’t understand what I’m saying.”

***************

I tied Chris’s hospital gown in the back and helped him slowly stand up, his hands on his walker, me supporting his left elbow as he gradually rose to his feet. I reached down and wiggled loose the fat, pink plug of his IV pole from the wall behind the bed and draped the cord over a bag hook at the top of the pole. I grabbed a blue disposable mask for him to put on, and we set off on our first hospital hallway walk.

It took a minute, figuring out the best side for me to walk on. He poked at me for walking half a stride behind him, so I rolled the pole quickly to move up and match his latitude. Halfway down the hall on the wall to our left was a large photograph of a goldfinch, and we remarked on the lovely wildlife. We chatted and laughed quietly about how much the woman who brought Chris’s breakfast tray seemed to adore him. (“My friend!!” she had said as she passed us a moment earlier.) Once down the hallway and back up the other side, we stopped at a large picture window that faced northwest. We tried to figure out what was what in the distance–the sharp, white steeple that pierced the sky, the curve of road we could see retreating behind thick woods, the mansions lining the ridge up to the right. We lingered together for a while at the window. Eventually one of us said, “Welp. Should we head back?” As we completed the hallway loop that took us back to room 909, I shuffled my step once so our slow feet were stepping in sync, parallel, how we always liked to walk.

***************

The tech brought in fresh towels and told us to press the call button if we needed anything. I said, “Welp, I guess they don’t help you bathe… Looks like it’s Team Schmerf!” “The dynamic blue-o!” Chris added. I laughed, the bursting out kind of laughter.

Chris hoisted himself to a stand from the side of the bed and shuffled to the bathroom with his walker. I was right with him, my hand holding his upper right arm gently, but ready. In the bathroom, he slowly circled around and backed up to the toilet. He lowered himself, gripping the handicap bar on the wall with his right hand, holding his gathered gown with his left, and I started the shower. Chris said, “It has that handheld shower head down there…can you unhook that?” The handheld shower head was attached to a pole that ran the height of the shower. It could move up and down on the pole, as on a track, but there wasn’t an obvious way to free it. “Hmmm…lemme see…” I wiggled it, swiveled it from side to side, moved it up and down, looking for any button or lever to release it. “I don’t think it comes off, babe. I’ve tried everything.” “Well, I don’t believe you. I think you should call the tech.” “I promise, babe! There’s no way to detach it from the wall! It just goes up and down! I don’t know why it doesn’t detach, but it doesn’t!” “I know you think it won’t come off. But I still don’t believe it can’t. Go press the call button.” “Fine. You’ll see!”

The tech came in and agreed, “Yeah some of these don’t come off the pole. Some of them do.” “See, Chris??” “But let me see… Oh, there we go.” She lifted the shower head off of a small metal peg.

***************

Chris faced the back corner of the shower stall, holding on to the handicap rails with both hands, arms in a V. His entire back was as wide as his shoulders, all the way down through his waist. The fluid in his abdomen had filled and thickened his whole torso. His feet were puffy and shapeless, and his legs were like tree trunks from the edema. His arms, though, never huge but always substantive, had shrunken with fat loss and atrophy. I studied his body as I gently scrubbed his back and legs with a loofa, taking extra care near the massive wine-colored stains covering his left underarm and rib cage. Bruising from his surgeries was slow to fade.

We figured out the washing as we went along. Just changing positions and getting out of the shower and gowned again–making sure the shoulder snaps were rightly aligned and around the right places–were each little puzzles to solve. Once dressed, Chris stood at the sink and commented on how gaunt his face had become. We both watched his reflection.

Leaving wet towels and washcloths strewn on the bathroom floor, I set up the walker in front of Chris, and we slowly set out for his bed. “Well that was a real nice time together, Babesbie,” he said.

Memorial Service

Tomorrow I fly to Chicago for a memorial service for Chris at our old church, Church of the Resurrection. I’m dreading leaving the kids–pray for their hearts, please, and mine–but I have a deep sense that this will be an important step in the grieving process. Not only did Chris and I attend Church of the Resurrection in our dating, engaged, and married life together, forming life-long relationships in such formative years, but these are also the people with whom God had us when Chris was initially diagnosed. They sent us out seven and a half years ago when we moved down to Birmingham, and they sent us out five and a half months ago when we embarked on a different life-altering journey. I’m nervous to return, and I’m so so hungry to be there. The kids have chosen to stay close to home, and they will be well cared for, and while I don’t relish the thought of being apart from them, I do relish the thought of space and freedom to move around and be still and talk without interruption and drive alone in my rental car.

The service will take place at 6:00 p.m. CST on Sunday evening and will be streamed here for anyone who wants to watch.

The Joy Effect

I cannot tell you how grief will look tomorrow, or even how it will look tonight as I go to sleep. All I can do is describe how it has been. And here’s something that has stood out to me: the times of my deepest joy in the last few weeks have brought simultaneously the deepest sorrow. Some of these instances have had to do directly with the loss of Chris. This has been happening since the beginning, and now that Chris is gone, the sorrow and beauty sear me at the same moment. When we stood in Chris’s hospital room the morning he died, I said to my brother-in-law, Charlie, “I’m gonna need you.” The implications were understood: I have four children without an earthly father present. Charlie replied, “I’m ready.”

The beauty in those two simple words. It overwhelms me still. There’s an ocean of grace and love behind them. But it’s the same ocean of my sorrow–the same water that engulfs me in an anguish too big to understand. It’s the same ocean.

More recently I’ve experienced this in a somewhat more inexplicable way, where the link to Chris isn’t so overt. I had a gathering for my birthday–just women–that was a thing of love, through and through. No stone was unturned in communicating care, beauty, truth, goodness. I didn’t anticipate the deluge of sadness in me during the gathering. The best way I could understand it at the time was that even such heights of love couldn’t touch the emptiness of losing Chris. But I think I have a slightly different understanding now.

Sunday we spent the night with my sister’s family, specifically so that I could watch The Greatest Showman (my niece’s favorite movie) for the first time. The joy of that film opened me. The space in my chest just expanded with air and lightness, the depths of my heart felt reached by joy. But I had to leave partway through to cry in the bathroom. I texted Chris’s phone, I miss you so much, babe. I sat on the toilet seat and looked at his pictures on my phone while the rest of the family waited for me to resume watching. When the movie was over I cried on the couch and tried to explain to my niece that, in fact, I really did love the movie.

Al and Charlie tried to articulate for me the link to Chris: the story is about enduring love. But no, that wasn’t why I was sad. And of course there will be times I will want to share things that I love with Chris, and that will bring a fresh anguish, but this was not one of those times. I’m pretty sure Chris would, at every level, hate The Greatest Showman. Nothing about the movie specifically made me long for Chris.

But what I see happening, perhaps, is that when my heart is opened up in joy–when something reaches in and gives air to those deep places–air and light and opening is given to everything those deep places hold. It’s the same ocean. To access the depths is to access it all, and right now the depths are holding so much.

As I wake up each day and do what is required of me, I don’t know what my grief will look like. The sorrow is there, and it will be plumbed one way or another. Sometimes it just wells up out of nowhere, of course, or in the context of talking and thinking about Chris. But sometimes, the deepest times, it has come alongside a true joy I am experiencing. Al said with tears, “What a kindness.”

Today

As I type Jesse is reading a comic book while spinning in our swivel chair, Ruthie is doing a math work sheet at the dining room table, and Andrew and Mary and chasing each other through the length of the house, tagging each other, screaming, laughing hard. Earlier this evening friends filled our house–my mom, the kids’ school friends and their moms, who I love dearly. There was noise and movement and laughter and wine. Many days and parts of days feel like this.

When my aunt died five years ago, I was stunned with grief. And I felt her spirit so close. I would make decisions as if she were watching me, wanting to please her. Her things in my house served as her ghosts and caused such a deep ache for so long.

I feel so different with Chris. His things around, which are everywhere and in and through and to all things, don’t shake me. I don’t feel his spirit near. I don’t imagine him watching me. Instead, I have felt so very distant from him. His healthy self, who I made a life with for all of these years, feels like a thing long passed. It’s hard to imagine him moving through our house, standing in the kitchen, sitting at the dinner table, working in his office, lying in our bed.

One of my friends suggested that maybe as more time passes between me and those intense and life-altering months in the hospital, more of Chris’s healthy presence will come closer to mind. I think she may be right. And her suggestion also affirms to me the otherness of that time. As I was walking through those months, even before Chris was admitted to the hospital, I was always finding the ways that we were still the same–the humor Chris and I shared, especially. His personality. But on the other side of it, I’ve reflected on how drastically different everything actually was: We were in a new place, on a different side of town; Chris’s body was changing in every possible way; medical problems were part of our every day conversations; Chris was suffering, which meant that the way we related to one another was so drastically different than it had ever been. Maybe this is why healthy Chris has been so hard to recall.

I believe that Chris is now with our Lord, our Creator. As he suffered at the end of his life and died, this belief brought real peace for his sake. On Sunday, the day before he died–the day I made him comfort care–I walked into his room and knew he was leaving this world. I set down my things and went straight to his ear. I don’t remember what all I said to him, but I do remember telling him to imagine it all–imagine where he was going, imagine the beauty of it and the freedom of it, imagine the joy of it. I was almost joyful in my anticipation for him.

Now, as I try to think about where Chris is, I mostly just feel so very divided from him. It’s impossible to know what it’s like where he is. If only I could picture it. Then I might not feel so separated from him. And so left behind. Chris is both so far back and so far forward, and both places are inaccessible to me.

I know I don’t really understand that Chris is gone. I haven’t seen him for over three weeks, but I don’t grasp that that time will not have an end date. I still sit down and think, What just happened? But I have a sense that there’s so much more coming. Like there’s a huge bubble full of water above me that is always threatening to break or will just slowly engulf me. How could it not be so? At some point I’m going to start believing this reality more than disbelieving it.

I will *try* not to think about how or when the waters will rush in. I know I wouldn’t be able to imagine it rightly. For today I’ll take the cushion that was given me–in my mind, in my heart, in my house.

Ebenezer

The Saturday before Chris died I made the decision to make him DNR. I had been thinking it over since getting to the ICU a few days earlier. When I unexpectedly ended up spending the night away from him on Friday, I had woken up in the night and realized that if something happened while I was not with him, he would be by default a full code status, and I could return to find him on a ventilator (from which he would never get off until another decision was made). Experiencing that sense of mid-night panic made the DNR decision very clear to me.

I asked Chris’s parents to come over Saturday night so I could tell them what I had decided that day and also to discuss how they had been experiencing him when they sat with him in his room. I needed to know that what I felt about his health and his life wasn’t felt only by me. By God’s great kindness, we were all having the same thoughts, reaching the same conclusions, letting go, in unison, of our beloved.

I wasn’t very emotional in the conversation. I was straightforward, fairly direct. We had real ground to cover. At one point I said, “I just want you to know that I’ve spent the first half of today crying about all of this.” My sister, who was also with us, said, “Right now, you’re the woman who lifts a car off of her baby. She has the strength to do it because of love.”

I’ve realized in these days, this week, since making the decision to let go of my husband’s life, since watching him die, since burying his body, that I’ve been lifting the car off of the baby for four months. I lie here in bed now, so tired, and I have no idea how I’ve lived these months. I have no idea how I drove back and forth each day from my house to the hospital, saying goodbye each way to the person or people who matter most to me in this world. I have no idea how I lived in a hospital for two months and watched as everything physically familiar about Chris changed. I have no idea how I could handle waking up any given night to his body bleeding and oozing from unnatural places. I have no idea how I watched him endure excruciating pain. Then I would go home, across town. I have no idea how I would pull up to our house and be as enthusiastic to see the kids as they were to see me. I don’t know how I would jump on the trampoline with them and do puzzles and read books. Of course–I had help. So much practical help. But how did my heart do it??

This is not a rhetorical question. I have been sincerely asking myself this. And I can reach only one conclusion: I was carried. I was carried through each day. I was brought through the valley of the shadow of death, nearly unbeknownst to me. I could never have imagined it rightly; in my broken imagination, I would’ve been crushed and alone. Because left to my own strength, I would have been crushed and alone.

I can only say: Thanks be to God. Thanks be to our Heavenly Father. Thanks be to our Good Shepherd. He didn’t only carry me; he carried each of us, even Chris. Even in Chris’s darkest days, he was brought through, I know it.

Now we are beginning a new part of the journey. I’m scared, and I’m sad. My mind zooms ahead to survey the landscape, and I don’t like it. Where is Chris? Why am I alone to raise our kids? It’s too much to bear.

But I have an Ebenezer stone. I have got to stop and set up this stone so that I can always look back and remember: We were carried. We were carried through the unimaginable. Remember. Remember. Each day he will carry us. That is what he does. Remember.

Livestream

For those of you who are unable to attend the funeral service (10:00 a.m. CST) and time of remembering (2:00 p.m. CST) for Chris, you can join us via livestream. Both services will livestream here. To follow along, you can find the order of service here.

Thank you all for joining us in person or in spirit.

*Chris has a keen interest in orthodox iconography. He was beginning a small business in which he would sell reproductions of icons from a contemporary Romanian iconographer he had connected with. His plan, now mid-production, was to mount high-quality prints of these images on wood panels he would make. The image on the order of service is the first icon Chris purchased rights to–the Pantocrator. The mounted prototype of this image was in our hospital room these last months, ever in our sight.

**Some of you who are unable to attend the time of remembrance have asked if there is a place to submit stories about Chris. I would love that. Please email stories to Alan Murphy at alanlikeaboy@gmail.com.

Funeral

Funeral for

CHRISTOPHER DAVID SCHERF

Thursday, December 17th, 2020 at 10:00 a.m.

Christ the King Anglican Church

2250 Blue Ridge Blvd. Hoover, AL

The service will be immediately followed by a brief graveside liturgy at Forest Hill Cemetery.

Please also join us for a time of sharing about how awesome Chris is back at the church at 2:00. I will never want to stop talking about him.

*Masks are required. Please do not come if you are experiencing any signs of COVID-19 or have been recently knowingly exposed*

Through the Veil

Chris died to this world this morning and awoke to the brilliance of Christ’s own light. When I imagine his joy, his peace, his wholeness, I can’t say I would want him to return.

But on this side, our hearts are broken. The last severals days brought new levels of suffering for Chris, and suffering he no longer understood. I had to make decisions on his behalf–a very painful process, but one I felt guided in consistently and kindly by the people around me. I didn’t feel alone.

Chris’s passing through the veil was calm and quiet, just a deeper and deeper sleep. He was surrounded by his family and mine, as well as our older two children. We are spent with grief, but we have been OK.

A funeral for Chris is planned for this Thursday, December 17th, at 10:00 a.m. in Birmingham. I will post further details as I know them. Please please come if you can.

Changelessness

Be present, O merciful God, and protect us through the hours of this night, so that we who are wearied by the changes and chances of this life may rest in your eternal changelessness; through Jesus Christ our Lord. Amen

This part of compline in the Book of Common Prayer brought me a real peace the other night in a scary time. We are in a scary time. On Tuesday Chris’s blood levels dropped critically, in response to the “line holiday” surgery. He was moved to the ICU, and as I sat in a stupor in this new room on a new floor with all new staff, I was asked what my wishes were for his code status. …We who are wearied by the changes and chances of this life…. God’s grace came to me in the three men who showed up shortly thereafter–priests from our church–whose presence comforted me. We went through compline together. They sang a portion in a baritone unison. Even Chris, in half-lucidity, said it was beautiful.

So that we who are wearied…may rest in your eternal changelessness…. As we recited the collect together, I had a sense of looking on something big, something undergirding, something solid, unmoving. Within and on the surface were the shifting things, the tossing things, us–all of us and everything we experience. But we were encompassed, so far beyond our vision, by the pearly white and pristine and unruffled expanse. It was too big to even see from within, but for a moment I had a bird’s eye view.

I am wearied by the changes and chances of this life. And, frankly, I don’t believe these chances and changes are going to resolve as my heart aches for. Chris’s internal bleeding did stop; after five units of blood he was stable. But his systems aren’t working well at all, and health is falling away from him. For our first few weeks in the hospital we seemed to be dealing with one hurdle at a time, resolving each problem as it arose. But the hurdles are piling up. Fluid is continuing to build up in Chris’s abdomen and then up into his lungs. He has been short of breath and panicky. Today they drained a liter from around his left lung, but this fluid buildup will continue. His liver isn’t able to maintain his blood sugars and they’ve dipped to critically low at points; he’s receiving amps of dextrose several times a day. He had dialysis today, which I’m very thankful for, but they weren’t able to pull off much fluid from his arms and legs because his blood pressure began dropping. We’ve been getting further and further from a second round of chemo, because there are too many issues to take care of first. We’ve also now seen on a CT scan that there’s been no change in Chris’s cancer after our first round. If we get to a round two, I’m not sure if we’d stick to the same regimen or change drugs.

Today I have grieved in a new way. Maybe tomorrow Chris will be experiencing more fully the benefits of these procedures and treatments and he will be lucid and calm and I will get to engage my best friend. It may very well happen. It’s hard to predict a day based on the day before. But even still, his body. None of these treatments can fix how his body is functioning. They are therapeutic efforts to sustain his life. This reality is sinking in to deeper and deeper places in me.

I am learning, because I have no choice, to put my hope in the changelessness of God, to put my rest in that placid and solid expanse in which we live and move and have our unpredictable being. I think he is calling us to look beyond–to look for what is underneath and holding us. I know that He Is. Thanks be to God.

Line Holiday

Chris was just taken down to the OR to have all of his lines removed. This includes his pleurex catheter (a drain in his abdomen that works to alleviate some of the cancer ascites), his Denver shunt, and his vascular catheter (the line in his neck from which he gets dialysis, chemo, and his TPN (nutrition). It’s called a “line holiday,” and he’s getting it done because he has infection around the Denver and the pleurex. The infectious disease doctor isn’t worried about the infection ultimately, but it needs to be resolved in order to move ahead with more important things. An infection would be lethal if his white count bottomed out again in response to a chemo treatment. Thankfully, he has really bounced back–or hobbled back–from the adverse effects of his last treatment, and his body can handle this nuisance at the moment.

Chris fears having all of these things removed; he’s afraid of swelling in his abdomen and no easy way to relieve it. And he’s afraid of the pain the procedure may bring. Getting the shunt put in was traumatic on his body. My hope is that having it removed will be less so. As far as the swelling goes, everyone here has been encouraged by a seeming slow down of that. It’s difficult to pinpoint the cause of this, but it could be any number of these things working together: the shunt effectively moving abdominal fluid into his vascular system, dialysis (though I don’t think dialysis would play a major role in that particular area), and, best case scenario, the cancer responding well to the chemo and actually secreting less fluid. Having the shunt removed might help clarify this one way or another.

Chris’s spirits are so-so. How he feels in his spirit is often so commensurate with how he feels in his body. It’s actually been beautiful to see how he is coming to accept this. He told me the other day that he is putting less pressure on himself to feel spiritually strong. Chris is a pious man, and I mean that in the best, most sincere way possible. He is active in his pursuit of truth and righteousness. He wants to please God. He reveres the Lord. But now I see him struggle to focus on anything but Shark Tank, and something inside of me knows, There is truth here. We are helpless. Our love of righteousness, our fear of God, and our ability to actively pursue him is a grace from his Spirit. But learning to be. And to know that we’re OK. To simply exist as children of God. Because he has declared that is what we are. What surety can we add to that?

Chris’s 40th birthday is tomorrow–or today, depending on when you’re reading this. Vanessa, the nurse leader of the floor, just came in and asked me what Chris wants for his birthday. She said, “We want to celebrate him and make him feel special. We’re family now, that’s where we’re at. It’s been a long journey.” I prayed this morning for God to let Chris live because I want to see who he is becoming. I so want to see what man comes out of this long journey. Of course it’ll still be Chris, and I wouldn’t have it any other way. But who will Chris be? My heart wants to know this so badly.

Sentinels

On my way out of the hospital the other day, I passed the two people at the screening desk. One of them handed me a parking token, and as I approached the doors to leave, I heard the other woman ask, “How are you doing?” I turned around, surprised, and said, “How do you know who I am?” “A young woman told me about what’s going on. You’ve been on my mind so much, and I’ve been praying for you.” The other woman chimed in, “Trust in the Lord. He is there for you. He hears you. You can be sad, you can be angry. He can take it all.” I teared up as I listened to them take turns reminding me of God’s promise to be faithful, reminding me to trust him.

As I walked through the parking lot to my car, going over the exchange in my mind, I kept thinking of the word sentinels. These keepers of the gate felt placed there on purpose–this place where we now live was being guarded by people who fear the Lord, who remember him and who reminded me to remember.

It was surprising but not. We are continually brought into intimate contact here with people who love God and want to encourage us and remind us: Don’t lose hope. Trust in the Lord. He is with you.

A week in to our hospital stay, our nephrologist was rounding very early in the morning. I was in bed but vaguely listening to her talking to Chris. As she left she came over, set something on the window ledge near me, and said, “This is for you,” and left the room. Half awake, I sat up and reached for it. There was a card with a painting of wings on the front. Written on it was Psalm 91:4: “He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” Along with the card was a leather bracelet that had a wing on it. The next day when she rounded, I held up my wrist showing her the bracelet. She asked, “Do you like it? A woman in my community makes those bracelets. I had a friend with brain cancer, and I bought two of those bracelets–one to give to my friend and one to hold on to. I knew someday I’d find the right person to give it to.”

On one of our hallway strolls, Chris and I stopped to chat with Mary, a nurse from Kenya. We didn’t know she was a believer until that conversation, and standing there in the hallway, we basically had church. Mary’s words were so poignant and grounded in Scripture. She has lived through many hard things. Her faith in Jesus is unwavering. Her confidence in him and her joy are undeniable, and she called us to that same confidence. She said, “I never have liked the phrase ‘hang in there.’ I say ‘dwell in there,’ because no matter our circumstances, we can always dwell in God’s presence with us.”

Our chemo nurse, Carol, overheard us talking about God with the Shuffles who were visiting. She chimed in and affirmed and encouraged our pursuit of godly wisdom and counsel. She has since told us that she carries us in her heart even when she’s away from work, and she prays for us often.

Now that Chris is on IV nutrition, we have a nutrition doctor. His name is Dr. Olson. I was home the other day when Dr. Olson first came to see Chris, but Chris told me what a wonderful man he was–how he made Chris feel so free and unburdened by the pressure to be eating and drinking, how he assured Chris that he would be taking care of his needs and that Chris would start to get stronger. Chris said, “I wonder if he’s a believer.” The next day when I got to meet Dr. Olson I was awestruck: He wasn’t just kind and gentle; he seemed to be from another realm. He said, “It is my pleasure to take care of Chris. I really mean that.” He paid attention to me, too, asking if I had questions for him. After some technical questions, I said, “Dr. Olson, do you practice a faith? You seem like a man of faith,” to which he replied, “God, Jesus Christ, and the Holy Spirit are my three heroes.” He went on to tell Chris that God is with him. He will never be alone. God’s promises are real and true. He is faithful. All he needs is a mustard seed of faith, and we will see him do big, big things.

This hospital is an amazing place. So much is going on here, not just in bodies but in minds and hearts. I like to remember the sentinels, guarding the gates. And within, at every juncture, there are more standing guard, ready to remind us, sent to us to tell us: Remember his promises. He is here. He will not leave you.

Round One

It’s been so long and it’s become harder and harder to write about life right now. Everything feels more complex–physically, emotionally, spiritually. I don’t know where to begin, and I don’t know what parts to keep to ourselves, where to draw lines around the intimate and the sacred.

Despite the wonderful news of Chris’s diagnosis, the days have gotten darker. After one round of chemo, Chris is suffering so much with dry mouth, sores, mucositis, constipation/diarrhea. Eating was already a chore and has become next to impossible with his desert mouth. As I type, our nurse is hooking up Chris’s first bag of IV nutrition. We are both so relieved. I don’t talk about this with Chris, but he knows: He looks like a different person than he did a month ago. He still has his hair at this point, but so much of his physical self has been lost.

The mouth issues have also been a tipping point for his spirit. All this time, with every issue he has been dealing with, he’s never lost his humor. It’s a strange scene sometimes: he and I dealing with something messy or painful or even nightmarish, then he makes a joke and I laugh hard and he has that gratified look in his eyes. But these last couple days, even that has been lost, and my heart aches for so many reasons. I have hope this light will return, but for now we endure.

Chris is living with a lot of fear right now. His white count has bottomed out, so he’s at a very high risk for infection. Pray that his count goes up and stabilizes. The muscles in his throat seem to have atrophied to some extent, and swallowing is a challenge. He’s on thickened liquids, which helps a lot, but he has bouts of fear when his coughing and swallowing aren’t working well. Aspirating anything into his lungs could cause pneumonia. He fears pain–the pain in his abdomen and around his liver, the pain in his mouth. He’s on pain pills and patches, but there’s still so much he simply has to bear.

Death feels near. But neither of us knows how near and if we will only graze past it on our way elsewhere. Of course that is our prayer.

I can’t write much longer now. There’s so much more to say and to ask for, and I’m tired. I know Chris has asked people to pray as the Spirit leads them–to listen and to pray accordingly. I ask for that now from you all. You can infer and imagine a lot of what we might need. And please ask and listen to the Spirit. I think we are both depending heavily on the intercession of others, the groanings too deep for words.

Diagnosis

I have been needing and wanting to update this week…so much has happened and, frankly, I haven’t had the time or energy to write. I hope to soon. For now, below is an update my sister sent out to a few people on Thursday. It was a momentous day.

“It’s been a big day. Thank you so much for praying about the kids’ visit. It was a precious time, and a joy to everyone. What a gift. Dr. Windsor came this morning to say he had heard last night from MDA that they have no results. They had multiple people working on it but to no avail. They were going to do a few more stains but didn’t anticipate arriving at any answers. This news wasn’t a surprise, but it finally ruled out treatment at MDA. Dr Windsor gave them more details about his “half-court shot at the buzzer” plan for chemo which could start tomorrow (Friday). He also answered questions about hospice. After the kids’ visit, Sarah went home with them, but was going to head back early to the hospital this evening for them to decide whether to pursue the last-ditch-effort, broad-spectrum treatment, or hospice. But. That has changed.Our dear friend Ben and Father Michael and Chris’s parents were at the hospital with Chris this afternoon. They had just shared communion together when Dr Windsor came in to tell him HE GOT A DIAGNOSIS FROM MDA! Chris called Sarah in tears with the news. At this point we’re not sure about details. But it is a diagnosis, an extremely rare low-grade sarcoma, with a targeted treatment. This is by no means a guarantee of anything. But it is absolutely the most hopeful news they could possibly receive today. Tonight they are celebrating. Praise the Lord!!! Please keep begging for a miraculous turn-around. Lord, let this be the start of a great reversal.”

The cancer Chris has is Follicular Dendritic Cell Sarcoma. It’s extremely rare–there have only been a few hundred reported cases worldwide over the last 30 years. Chris started his first chemo treatment yesterday.

Lord, we are all in your hands.

Denver Shunt

Yesterday Chris had a Denver shunt surgically placed in his chest. The purpose of the shunt is to take the fluid that collects in his abdomen and put it back into his bloodstream above his heart. The heart can then pump it through his body, and, if enough of the fluid can stay in his vascular system, it will make its way through his kidneys and out through urination. It shunts fluid up to his heart only when he is supine. He can also manually operate the shunt with a little pump that is under his skin against his rib cage. When the surgical resident was first describing this pump to us, I said, “Does it have a big orange basketball on it?” Chris thought it was a good one, but the resident literally had no idea what I was talking about, because he doesn’t know what Reebok Pumps are. This is the world we live in. The residents aren’t even 30, and I look down on them for their youth.

Ideally, the shunt will serve to kick Chris’s kidneys back into action. Please pray it does. Getting his kidneys to function is the biggest piece of treatment preparation right now. Oh, and getting a diagnosis, which is still pending. Dr. Windsor and Dr. Rector (the chief pathologist here) are in direct and regular contact with Dr. Tan at MD Anderson who is working on Chris’s tissue there. Cell phone numbers have been exchanged, so when and if there’s any word, Dr. Windsor will know immediately. (Cell phone numbers have not, however, been exchanged between me and Dr. Windsor; nevertheless, she persisted.)

I’m tired this morning. Nights at the hospital provide no rest for the weary, as everyone knows. But we continue to be so thankful for our care here. I grabbed a handful of DAISY award nomination forms on my way up from the cafeteria this morning, because I want each of our nurses to be recognized for their wonderfulness. Most each of them. Many of them. Well, Gina.

But Erin and Quintar and Ingrid and Mary, too. All so wonderful.

I’m not in the mood for a deep and ponderous post. But I will say that, for me, and for many around Chris, these last few days have been heavy and raw with emotion. Just a lot of crying and praying and imagining and crying. Today, Chris is in very much pain and feels very terrible because of the procedure–please pray for relief and rest for him now–but while the rest of us are heavy, Chris’s spirits have been light. He feels peace and hope. Thanks be to God.

Conversations

Friday morning we had a long conversation with our oncologist. It was one that we were both ready for, or, at least, one that we, together, knew we needed to have. Over these last few weeks, as I’ve watched Chris’s body stop working as it should, I’ve been so burdened by the thought that things must be much worse than we had anticipated them becoming. The changes in his body didn’t seem like mere expected symptoms of something amiss inside anymore. The changes had taken over his ability to move easily, to sit, to be awake, to even breathe well.

Communicating with Chris about my observations and thoughts has been difficult for me, in very large part because I’m not a student of medicine and the body, and I don’t know if what I’m observing and wondering is valid. Our interpersonal dynamic has been touchy in these matters. I’ve worked subtly while being here at the hospital, attempting to extract information from our various doctors, trying to ask questions that lead to some clear answers while not being too pointed in front of Chris. I’ve been afraid of his fear, and I’ve been afraid of his misunderstanding, and I’ve been afraid of him perceiving me as being controlling or belittling. I see the irony in that–trying to shape a conversation so that he hears something I think he may not understand is manipulative and controlling. I can’t say I’ve navigated the waters of this new territory between us well. Sometimes I have, and sometimes I haven’t. It’s been tricky and sensitive and painful in new ways. We have new insecurities, new grievances with one another.

But Thursday I read some things on the internet that I couldn’t hide from Chris–scary things pertaining to the symptoms he has. I’ve avoided Google this entire time, amazingly enough, but I had a term from the surgeon, and I decided to look it up. I had to understand more of what was going on with Chris. So I read some things, and I cried. He asked me why I was crying, and I had no choice but to tell him. It was scary prognosis stuff. Without an actual diagnosis, we haven’t been given any sort of prognosis in this process. Chris was still under the impression that he had a GIST (a slow-growing, very treatable) cancer. But that is not where we are. We both received this new information, in the quiet of our room, and purposed to talk extensively with Dr. Windsor the next morning.

I told Dr. Windsor what I had read. He didn’t rebuke me for googling, but he said that he is unwilling to attach a timeline to Chris, in part because we don’t yet know the cancer type, and in part because of his young age and relative health. But, yes, he said, Chris is very very sick; his cancer is very advanced. If Chris were 70, he said, we would be talking about hospice, not treatment. He doesn’t believe Chris’s cancer is curable.

But, he still has hope that treatment could meaningfully affect Chris’s life. If we can determine the best treatment. (Chris’s tissue sample is being studied now at MD Anderson, and is apparently marked as a priority.)

All of this information came to Chris like the initial news of his cancer: it was shocking, painful, so very heavy. It has come to me in the same way, but more gradually and over a longer stretch of time. The news is difficult even to call news, because there are still no real answers. But the reality of Chris’s present health and the danger he is in is much more clear to us now, and mutually understood. I admit that a certain burden has been lifted from me: the burden of quietly bearing something so heavy apart from Chris and without his knowledge. Now we, together, are living these days, one at a time, in light of this extremely hard reality.

Our conversation with Dr. Windsor was not our only conversation on Friday. We got to spend time getting to know our beloved Dr. Jijelava, the Georgian hospitalist who “continues to delight” Chris. He shares with Chris a love of Orthodox iconography and has offered such kindness and hospitality to us here. We got to know our nurse Jennifer a bit, and enjoyed her company throughout the day. Our dear friend Riley came to be with Chris Friday afternoon when I went home to see the kids, and Father Michael even came by to serve the Eucharist. Chris, Riley, and Michael had sweet time together that afternoon.

There was, of course, the difficult conversation that Chris had with his parents over the phone. It felt, he said, like that first call he made to them from Chicago in August when he had a CT scan for what he suspected was appendicitis. A new grief has broken over everyone.

Conversations are needed still with our children. How do we talk about with them something we can hardly explain in any concrete terms? How do we dignify their personhood by keeping them in the light of the truth, while considering their youth and the toll of anxiety? We need wisdom.

Today we read Hebrews 11 and 12 together, about the sanctifying, merciful discipline of God towards his true sons and daughters; about the cloud of witnesses, the saints, who endured mocking, scourging, imprisonment, and death for the sake of being resurrected to a better life, those of whom the world was not worthy; about Esau, who sold his birthright for a bowl of soup–his precious inheritance for such a temporal hunger and relief. Father, hear us now: we are no better than Esau, but we do not want to sell our birthright for a bowl of soup. Give us the courage and endurance to walk in the way you have set before us, to a glorious end. Lead us closely, good Shepherd, and kindly.

Week One

Today marks one week in the hospital. I’ve started making it a tad cozier…put all the clothes and bags in the tiny closet, stood our books on their spines along the window ledge, as if they’re on a bookshelf, set up an icon and a lamp. It’s tolerable to spend the nights here; there’s something very simple about it.

Chris is doing OK. Not great, but OK. His kidney function started improving over the last couple days, and the nephrologist decided to give him Lasix today to absorb some of the fluid in his body and attempt to trigger even more kidney function. The Lasix also has the potential to set back his kidney function, and I’m thinking that’s probably what happened with it. There wasn’t an uptick in Chris’s urine output. We’ll have to see what the doctor says tomorrow about next steps.

Chris’s spirits fluctuate throughout a day. He describes his nights as being a parallel life–he has feverish dreams about being in the hospital, staff and family coming in and out. He can’t escape his place and position, even in dreams. I’ve thought he sounds tormented in his sleep, and I’ll whisper, “It’s OK…It’s OK.” Pray for his sleep and his dreams–for relief in the night, such a vulnerable time.

Mornings take a while to get settled into. Chris often feels nauseated for a while and uncomfortable from the night. Afternoons are generally when he’s the most alert and able to find measures of pleasure and comfort. Today it came in the form of having our friend Riley here, along with Father Michael, our priest. Getting to talk with the two of them and have communion filled him. He’s come to treasure the purity of simply being with people he loves.

I have more thoughts and stories. I do like to keep record of those. But I don’t have any more energy tonight.

Thank you to everyone who has passed along MD Anderson connections. We’re working on it, and all the info from you all is very helpful!

Loved

We are waiting on so much here at the hospital…specifically for Chris’s kidney function to improve. We have an amazing nephrologist who we respect and appreciate on so many levels–we believe we are well cared for–but there is no improvement so far. We are waiting. Typing those words reminds me that as we wait on medical things–things of earth and flesh–we also wait on eternal things. We dwell in eternal things. What a mercy. What a mercy, that amidst these sad, breaking, complicated, logistical, theoretical, daunting, painful days, there is an undergirding sense of being held. There is an overarching sense of God’s reality and everything that He Is.

I experience this sense through so many avenues. It can be direct and intense, especially in my weakest moments alone. And often, it is in the five million big and small things that we are given in a day by you all. Simply driving home from the hospital this afternoon, two separate dear friends ended up in the lane next to me and rolled down their windows to say, “I love you” as I passed. I have never felt so thoroughly carried in my life. At every turn; in every way.

I’m reminded of another difficult day a couple weeks ago. Chris had gone in for a Paracentesis to drain fluid off of his abdomen. It ended up being a very traumatic experience for a couple of reasons, and after joining me briefly afterwards in the waiting room, he had to be taken back again abruptly. I was left there very scared and panicked. I sat down in a chair, so frightened, and my eye caught a man sitting across the room. He was waving his arm back and forth above his head. It took me a minute to realize he was waving to get my attention. He held my gaze. Then he pointed to his chest, then made prayer hands, then he pointed to me. I lowered my head and sobbed. I looked back up, and he was still looking at me, his hands still pressed together in front of his face. He held that position for ten minutes as I waited to hear how Chris was. I just stared through my tears, and he just prayed. We are carried.

I’m not sure how Chris is experiencing the Lord these days. We are both in the valley, but he is bearing it all in his body. Even adjusting positions in his bed is a challenge. He trusts the Lord. He can recognize him. But he is encumbered heavily, and it may be that the entryways in and out of his own spirit feel smaller and tighter. I don’t know.

Thank you all so much for loving us. I still feel scared. But even recalling and writing these things centers me. Thank you for carrying us so thoroughly.

**Chris hasn’t been using his phone much at all while we’ve been here, but he wanted to say thank you to all who have texted and called him.

Today

Today was a different day than yesterday. It had its hardships, even some agony, but it was a different day. Chris had a successful procedure today to drain the fluid from his abdomen (3 liters worth), which I pray with all my heart affords him some relief. He also had a pigtail catheter put in so that he can continue to drain some fluid out as needed by himself. It’s not as cute as it sounds. But we’re thankful for it. We also got more tissue to biopsy from his liver–perhaps the best samples yet. These will go to MD Anderson with us if we are able to be seen there.

Which brings me to my plea: If you have any connections to MD Anderson, or know anyone with any connections there, would you please let me know? In my initial phone conversations with them I’ve realized that getting in there will not be easy. I’m ready to work hard on this, but if any of you can help me, I welcome it.

Some of what made yesterday so hard was feeling the weight of being the decision maker. Chris has been so in and out of engaging, often unable to process things well and without drifting off. I felt so intensely like I was being called to act in an entirely new capacity, and one that is very daunting to me. I didn’t feel alone, but I did feel like, ultimately, so much was going to be up to me. As the weight of those things fell heavy on me, I looked across the room at the one person who has always provided the best comfort and strength when I need it, and he was unable to do so. He was so helpless, and my heart broke in a way I’ve never before experienced. I eventually squeezed next to him in his bed. He put his arm around me, and I felt his hand squeeze my shoulder and then relax as he drifted off.

Today was different than yesterday. Chris, at least before his procedure, was more awake and engaged. We had some hard talks. We prayed. We needed each other and we were able, by God’s grace, to each engage our hearts for the other. It was a sad day, and challenging, but not breaking in the way yesterday was. Thank you, Lord, for a different kind of day.

Please pray for Chris–that his pain from this procedure would not eclipse the relief it afforded. Pray for peace in his heart and that he would see color in the world around him, not just the gray existence that chronic pain and discouragement can bring. Pray for me–that tomorrow I will wake up and put my big girl pannies on. I never lost the sense that God was with me yesterday. I’m ready to receive his grace for tomorrow’s challenges and walk forward in what I’m being called into.

Please Pray for Us

It’s been so long since we’ve posted. A lot has happened very quickly, and we are in great need of prayer. Chris’s condition has continued to worsen as we’ve awaited the report from California, and we realized yesterday morning after experiencing shortness of breath that he needed to go to the hospital. We learned that he was dangerously sick, and he has been admitted to the ICU here. There are too many things to go into specifically, but the priority is getting his kidneys functioning and his potassium levels down. I thank God we’re here.

We learned this morning that the California report came back inconclusive. We are seriously considering transferring Chris to MD Anderson in Houston, once he is stable and comfortable enough to travel. Our doctor (along with several other healthcare professionals we’ve consulted) thinks it’s a good idea. Still, it feels like a very big decision, and a very big thing to do, especially as we consider our most precious little ones. Please pray for us in this next day or two as we weigh all of this out. Please pray for Chris’s health and comfort. He is very weak and very sick but suffering with grace. Please pray for our precious children who are aching with all of this. I got to be with them this afternoon until I tucked them in tonight. My heart can never be where it fully wants to be when we are so divided in this way. I think this has been the hardest day of my life.

Today’s Appointment

We had an appointment today with Dr. Windsor. We knew already that there was no diagnosis yet. Last Friday Chris’s biopsy tissue was sent to a molecular lab in California to get genetically studied. It appears the pathology lab here has exhausted its resources. I asked a surgeon friend of a friend to get me some intel from the path lab yesterday, and I took comfort in learning that as soon as she said Chris’s name everyone knew exactly who she was talking about and said they’ve been working on his case every day for a month. It appears his cancer really is that atypical (he’s got a 4 wing, so I’m not surprised*).

Despite not knowing a sure diagnosis, Dr. Windsor decided that he would start Chris on Gleevec, the drug used in most GIST cases. He still believes that’s most likely what Chris has (though clarifies that he does not know that for sure) and decided that taking the Gleevec wouldn’t cause Chris harm as we wait to hear from the lab in CA. Once the sure diagnosis is in, we will adjust the treatment accordingly if necessary.

We stopped on our way home from the appointment to pick up the entire pharmacy, and we now have some of every type of medicine. It feels like. Chris has lost much of his appetite, so we got something for that. He needed stronger pain meds, so we got that, and he needed something for constipation to take with his pain meds, so we got that. The Gleevec seems to have made him quite nauseous tonight, so we got some anti-nausea meds for that. Phew. There’s a lightness in my writing all of this, but these days and tonight have been heavy.

Please pray. You can imagine all the ways we need it so much. We love you each and are so thankful for you.

*Enneagram joke, not medical information