Christopher Scherf

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.

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.

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.

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.

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.

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.

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.

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!

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 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.

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.

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

Monday morning before our appointment, my mom (aka Moomers) called a retired pathologist to whom she has a connection. He had offered to talk through anything that was going on. This man, Tom, listened to our situation and made it clear that he believed the pathology results for Chris should have been in long ago. He didn’t see a reason why the type of cancer Chris has wouldn’t be already known. He said he thinks the world of Dr. Windsor, but he suggested that if we were told in our appointment that day that there still wasn’t a clear answer, we should ask, “Who can we go to to get an answer for this?”

As you all know, that is what we were told at our appointment. I sat there, my little notebook open with Tom’s name in it, ready to challenge Dr. Windsor, ready to complain and not accept “no news” for an answer. But the defeat of the moment felt so heavy to me. I wanted to open my mouth, but I couldn’t. The thoughts I had prepared went through my mind, but they seemed of so little consequence. I just sat, staring into space, with tears running down my cheeks. 

The next day I was able to recognize things from our appointment that were important to give credence to, primarily, when Dr. Windsor said, “The worst thing I could do for you is treat you incorrectly, for the wrong thing.” I was able to think more about his promise to us that he wasn’t twiddling his thumbs but that Chris’s case is his priority. He had taken slides of the tissue samples to the tumor board at Grandview to have as many eyes on it as possible. He had narrowed down the possibilities of what the cancer is to a small pool, and he would continue to work until he knew for sure. He emphasized that Chris’s cancer is atypical.

Then last night, my mom called me crying. I was alarmed, but she said, “I’m happy!” She had received an unexpected message on her answering machine from Tom. He told her that he and his wife had been out that evening on a walking path, and he happened to run into Dr. Windsor, whom he hadn’t seen in years. He brought Chris up to Dr. Windsor, and they talked through his case (as much as they were able). Tom told my mom that he came away from his conversation with Dr. Windsor feeling so confident that he is doing all the right things for Chris—that they are running the right tests and doing the right research. Tom said he believes Dr. Windsor cares about Chris and is concerned about his case and knows he will have the right treatment for him at the right time. 

Our desire to get treatment as soon as possible hasn’t diminished a bit. I call the office everyday to ask if the path report is in. But this story is a gift in the waiting time. 

Well, still no significant news to post, unfortunately. I am confident that a lot of doctors are paying attention to my case at the hospital and working to identify what it is. As I said before, several types of cancer have been ruled out, and my oncologist (who I have grown to trust more and more) still thinks it’s most likely a GIST. However, he said it’s atypical whatever it is, and also that determining which medicine it might best respond to is really important before starting treatment, assuming it is a GIST. So there is more pathology lab work to be done.

I know many of you have felt deep frustration and worry over how long this is taking. My symptoms have gotten worse, which is troubling. I don’t feel impatient or anxious myself, except that I am eager to start treatment. I also feel that this is the path the Lord has laid out; none of it has been out of his control. My prayer is that God would use this period of waiting for our spiritual betterment. I pray we all can open ourselves to him, asking him to work in us during this unique time. I feel we are close to this mile marker…just a bit further to go.

Much love to all and thanks to everyone who has given in one way or another – it’s truly a blessing.

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

-Wendell Berry

Yesterday Chris had his CT-guided biopsy done, and apparently the doctor was able to get some good tissue samples. The procedure went quickly, the radiologist who did the procedure was very kind, as was his staff, and it felt good to have an action step to take amidst all these waiting days. I like being with Chris at the hospital. We get to sit together and talk quietly in the waiting areas. Al also met us there, just to be in the parking lot and pray and bring me coffee. What a thithter I have. 

We had a rough several days leading up to this week. Chris’s symptoms have increased pretty significantly in fairly short order—I think mostly related to his liver swelling and causing distention, discomfort, much fatigue and achiness, and lower back pain. We went in to the office on Monday at my request. I wanted someone to actually *see* him (our appointments have been so few and far between). Dr. Windsor prescribed Chris stronger pain meds, and those have helped his discomfort significantly. We’re very grateful. He’s still at a point where even standing for very long is too much for him. But I’m so glad he’s not in much pain. This is a boon for both of our spirits. 

Our next appointment is scheduled for Monday, whether the pathology report is back or not. I pressed Windsor on how long the results would take, and he wouldn’t promise anything. He even alluded to possibly needing to send it off again, but he assured us that everyone who is involved in this is very eager to figure out what it is. I’ve told Chris that while I know in my head there will be some resolution to this mystery someday, I feel like we will literally never know; we will never know what kind of cancer Chris has, and we will never start treatment. That’s where my heart is: exhausted and disbelieving in this diagnostic process. 

Seeing Chris change physically has given me (and us) a very real sense of the valley. I’m concerned for him every minute (whether in any given moment I need to be or not). Historically, I’m the one who gets so anxious about health issues. He’s the one who, over the years, has reassured me that what I’m experiencing physically or what my children are experiencing is not cancer. I’ve learned to trust his voice and rest in his objectivity. Now I feel fears and concerns for him, and I have a difficult time knowing if my old well-worn neuro-pathways are just activating or if, in the objectivity and closeness I have, I can see things in him that may need to be addressed. Thankfully, especially over this last week, we’ve had conversations about all of this. The conversations have been hard, but they’ve been fruitful for both of us. And, as is the way of my husband, Chris has ministered to me in my fears and insecurities. He is a real channel of Christ’s presence and peace to me. Of his care. Of his truth. I hope I have ministered to him as well.

A couple thoughts from friends I wanted to share: 

My friend Helen gave birth at 28.5 weeks last week to her precious boy, Eric Christopher (Thanks be to God, he is strong and well!!!). This after weeks of hospital bedrest beset with anxiety, and much, much loss over the years. In a text to me several days ago, she said, “Sometimes it feels like everything is just a different kind of waiting.” Of course, to her and her husband, this is proving so true. How they have waited. And now, with their son here—the very thing they’ve been waiting for—they wait in a new way—waiting as he develops in the NICU, waiting to bring him home. I instantly saw how true this is for us too: once we get a diagnosis and treatment plan, our waiting will not be over. Then we will be waiting to start treatment, then we will wait and wait to see if the treatment is effective…. And of course I went back to what my friend Katherine has said several times: We wait. Not just on results, but on the Lord. It’s beginning to sink in to me that learning to wait, in truth and in kindness, on Jesus himself, will be my life’s work. The circumstances will always be changing; the eternal things will never change, and for those things we have to learn to wait and watch.

Another friend said just yesterday, “May you find joy in releasing to the Lord those things that you cannot control or bear.” And how much of all of this is in my control? How much is bearable? None of it. None of it can I change or control or even hold on my own. I was struck by the simple invitation to release it, to hold it up to the Lord for him to bear. He has borne all this and much more before. And then the thought: Could joy come with the releasing? Joy?? I will test it and see. This is not an easy exercise, but I will see.

We finally talked to our doctor today and learned that the Harvard doctor was unable to determine what type of cancer Chris has. Apparently the tissue sample wasn’t large enough to determine anything definitive. So we are where we were 10 days ago. Lord willing (cheers, Moomers), we will get another, somewhat more invasive biopsy scheduled for early this next week. Doctor Windsor said that with a larger tissue sample, they shouldn’t need to send it back to Harvard; it should be clearer to the staff here. We will see.

I am exhausted. I’m exhausted from waiting. I feel spent. Although I keep thinking about labor and how spent I thought I was before learning I was only three centimeters. Regardless, I am struggling to keep above water sometimes. I can spin out into anxiety, fearing what could be happening in Chris’s body as all these many days pass with no treatment (Chris is often physically fatigued and somewhat uncomfortable, but he is more patient, less anxious, more grounded than I have been of late). I know my anchor holds within the veil. I know it truly. But the waves still toss at the surface, and I feel them. 

There is also the Body. The very real Body of Christ in this world, and we are carried by it. Just yesterday when I sat on the bleachers at the park for the kids’ running club, I was literally surrounded by the Body of Christ—hearts so open to listen and just let me be where I was, loving me so well, praying with me. And people creating that space for me all the while by keeping eyes on little Marebee. I felt seen and held. By the Lord, by his people. 

The park was one example. A poignant one on such a difficult afternoon. But this seeing and holding is happening all the time to us. We are thankful for so much. 

Good news, but still waiting.

Just a quick note to let everyone know I have an appointment with my oncologist this Wednesday at 2:15 to learn the diagnosis. Please pray for us in the interim, and especially on that day. I am eager to start treatment, but I am bracing myself for hard news. For that reason I haven’t been as anxious to find out the results as everyone else has. I know that no matter what, my life is in the Lord’s hands but feeling the reality of the peril is hard. I have been comforted by thinking of soldiers who have faced similar peril but walk forward into battle anyway. In some ways I feel the battle will really begin on Wednesday.

These have been heavy days. We did learn that as of Friday the stains from Chris’s biopsy are actually not lost somewhere in the stratosphere, but are finally in the hands of the pathologist here to be read. Still, we won’t be able to see our oncologist until Wednesday. The waiting has become hard. I am reminded by my friend Katherine to wait on the Lord. Even more than we wait on results. Wait and see where the Lord’s eternal reality will intersect with our earthly reality. I have a sense that it’s happening now, but it can be hard to turn our eyes upward and outward to recognize it. The pull to withdraw and turn in to ourselves is strong. This waiting coincides with more fatigue for Chris (is this the result of melancholy or sickness?) and a slow down of the flurry of texts, emails, and drop-ins that come at the onset of bad news. There was a lot of energy at the beginning of this, and that energy is decreasing. I think it propelled us for a bit. 

Knowing a valley is ahead is not the same as entering it. Maybe that is where we’ve come. My impulse is to try to distract from where we are. When Chris’s spirit is burdened, I have a moment of panic, until I realize that he is where he is in truth, and I cannot take away his burden. There is only one place for him to go—one person equipped to hold what he carries. And it’s not me. I will be with him, though, in every state. We will continue to sit and pray together and remind each other to wait on the Lord. And, by God’s grace, we will lift up our hearts to him more and more fully. Lord, to whom [else] shall we go? You have the words of eternal life, and we have believed and have come to know, that you are the Holy One of God.