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

A Story

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. 

Post-appointment

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.

The Peace of Wild Things

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

Check-In

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.

And So We Wait…Longer

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. 

Appointment Set

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.

Still Waiting

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.  

From Sarah

It’s Monday of the week we expect to hear the results of Chris’s biopsy, and I thought I’d hop on with some thoughts. I can’t let Chris be the only one with a platform! 

Many of you have expressed anxiety about this waiting period and sympathy for how hard the waiting is. Oddly, the waiting hasn’t been hard at all. Maybe it’s because these days feel like our last before things really start to change. Also, and maybe more looming, hearing a medical declaration about Chris’s life and what we should or can expect for it, feels like the beginning of a steep descent. We know a valley is ahead. We don’t know where it will lead exactly. We know it will be deep, and we know it will be dark. And we fear that with medical knowledge stated clearly to us, we will have a harder time holding on to a sense of hope

A friend texted me last week and said this: I will be praying for your appointment in a few days. I’m going to pray that you’ll walk away from it with more hope than when you got there.

What a profound thought. I felt my mind blown open with possibility. Appointment day—hearing the words spoken to us that we already know will be so heavy—may not end up being the hardest day of our lives thus far. Or, even if it is the hardest day, it doesn’t have to be devastating. I had only been imagining that day as dark and despairing. But the LORD will be there. How will he show himself? These are the things I can think about and imagine as I anticipate the appointment. What will the Lord do in our hearts that day? What will he bring to mind? With what will he comfort us? What will he speak to us about himself? How will he simply calm us with his love? I believe he will be with us. And I believe his hope can come in so many forms. 

I would not have put us here. I would never have willingly offered this—the seeming stability of our family—to be changed in these ways and in the ways we do not yet know. But here we are. Our hearts are open. What do you want to give us, Lord? Deepen us. Transform us. Open our eyes. Open our ears. Fill us. We want all that you have to give us. 

Biopsy

Just a short update to say that I (finally) had a biopsy today. They took a tissue sample from the mass on my stomach and from my liver. Once they analyze it, we should have more information about what type of cancer it is, treatment options, etc. I should get results some time early next week. Thank you for your encouragements and prayers.