First, let me acknowledge: journaling is NOT my best spiritual discipline.

Today marks my five year Liver-versary! This is the BIG one. As each year turns into the next, I will of course be full of gratitude, awe, and deep appreciation for the gift of new and additional life.

But five years marks a different kind of stability. If you search different transplant centers and their outcomes, their numbers are reported based on the recipients who make it to the five year mark. At five years, conversation can be had about visiting providers every year instead of every six months. I’m virtually guaranteed to have some sort of skin cancer appear because of my transplant medications- but the experience of this is so much improved for those who don’t have any spots in the first 5 years. For my EHE visits too this marks an important moment. EHE can sometimes reoccur in a *transplanted* liver- and getting to the five year mark again makes long term outcomes so much better.

Most of those appointments for me are over the next few weeks, although my liver/transplant doctor appointment has been pushed out. Apparently Duke Hospital’s transplantation department is the fastest growing one by far! And, I’ve got the best doctor 😏 so I don’t mind the delay there.

I can’t wait to talk to Dr. Berg about the book Kevin and I listened to a few months ago: When Death Becomes Life. It is by a transplant physician who interweaves stories from his practice with the history of transplantation that makes it feasible to even measure those five-year outcomes. It’s well-written and interesting- especially for those like me with a science background.

The EHE Foundation’s slogan is: Just Live. I have lived SO much life in the past five years. The slogan bugs me though. I don’t want to just live- I want to THRIVE! I want life lived to the fullest extent possible. While I’m sure that’s what they really intended, I essentially think about words and deep meaning for a living.

On June 19, we finally had the WNCC’s Ordination service for those of us in the 2020 class and those in the 2021 class. It was as near-normal an in-person service could be at this point during the pandemic, and so wonderful. I wondered approaching this moment what or if I would feel as the Bishop placed hands on my head and prayed for me (along with my Dad and Mark Conforti- those Elders who have most championed and supports my call 💕).

What did I feel? The most concentrated sense of gratitude I’ve ever felt. I’ve had lots of moments of overwhelming gratitude- the kind that make your emotions erupt and you ‘well over’. This was different. It was almost like *I* was part of the central welling up water of a fountain. I simply responded: Thank you Jesus.

This journey of ordination, EHE and transplantation are intertwined. These past five years have been so swift, and so beautifully savory. I am full of gratitude and so let it flow: for the mysterious and beautiful history, technology, and above all the people & God that have brought me thus far, and will not leave me yet.

I got the call on Thursday about 3:35. I had just lain down for a nap about 10 minutes before, but I was instantly and totally happily awake.

Mom had a ‘spidey sense’ of urgency the last week of June, and ended up coming down on Wednesday, so she was already down from Asheville with us. They gave me until 4:30 or 5 to get to the hospital and check in admitting, so it was just enough time for Kevin to get away from work in Greensboro and run in for a minute.

It felt really odd to check in Admitting- everything was super quiet in the area. It also felt very awkward to take a ride upstairs in a wheelchair when I could still walk. After this ride, the awkwardness went away. I guess the change into the hospital gown for the suite of labwork and chest x-ray assessments made it all feel official. There was a sense of urgency to get to the hospital and have assessments done, but they didn’t yet know when the donor OR time would be- and then what my OR time would be. They were guessing around 9pm and midnight. I was cautioned many times prior to this day and on this day that the plug could be pulled on the transplant even up to me being on the operating room table if anything was not as it should be. I was expectant and ready, but it all felt surreal. I wasn’t going to allow myself to believe everything was set in stone until I was on the table.

The biggest thing that struck me as we were waiting was that every nurse and medical provider kept asking, “Is this your first time?” We were a little bewildered at first, but soon realized that they kept asking because many people are called in as a secondary person on the list and have to go through all the assessment in case the primary doesn’t work out- and many people have to come in multiple times before the liver quality is right or they are healthy enough for surgery. The medical staff was so excited that it was my first call and that things seemed to be a go [as were we!].

The waiting wasn’t so bad. It seemed to fly by for me. My in-laws were able to get to the hospital fairly quickly, Kevin & Mom came with me, and my Dad and Sister were able to get here in plenty of time before surgery. I got a call from my District Superintendent and from Bishop Hope Morgan Ward! Dad’s new DS happened to be close by and dropped in to pray with me as well. My church member who works in the Children’s hospital was working that night, and able to come say hello and offer hospitality to my family. In all of these things, it did not feel too long. Nine o’clock came and passed, and 10:00, and then we finally got word that my OR time would be 12:30. [For all those who wondered about ceasing to eat or drink before surgery- that was no problem after all (~4pm-12:30am). Maybe some calls happen more quickly, but they know how to deal with it.]

A nice fellow from Kenya with the same first name as my mom’s dad came to wheel me down to the Pre-OP area, where they did the last bit of checking and preparation and I got my blue hat signaling I was ready for surgery. It was incredibly quiet. There was only one other patient in this massive area, writhing with pain that they were waiting to be controlled before they took him to surgery. It was nice to be surrounded by my family. I felt like I definitely had the best position, though. I got to be unconscious and get a new liver- they had the hard job of waiting in the middle of the night in chairs designed for people not to fall asleep in. Someone was very nice and brought them all heated blankets and self-fluffing pillows to arrange themselves for the wait.

The surgeons were very happy. They came out to check with the family a few times. The major concern was that the donor liver would be too large, but they reported it was the perfect size. The blood and bile connections started working immediately with no leakage. They *almost* didn’t put a drain in, but did anyway. It did not drain much, and I only had it a few days. They only gave me blood because my hemoglobin was a little low, not because of blood loss. The surgery was projected to last between 6-8 hours [up to 12 by some estimates], but my surgery only took 4 hours. I was breathing on my own before I left the OR! Grace upon grace.

I stayed in the ICU for 36 hours. I really don’t remember it except in little snippets. I remember my nurse’s face, my sister and husband cooling my face and hands and feet with washcloths as requested, glimpsing Angel and Catherine. Maybe I would remember more if prompted, but that is ok. I apparently moved to a chair facing the window for a while, which made my family really happy. I took a walk soon afterward, and have a vague memory of that. I do not remember having an ultrasound [which I think Kevin and Dad had never seen one of before, so they were super-fascinated by the color overlay and sound of fluids moving through vessels], but I do have a tactile memory of having a panel pushed behind my back for an Xray.

My hospital stay to me consisted of my room on the transplant floor, which is just fine! Thankfully, I looked up some lists people had posted online of hospital ‘go’ bags. I was so glad I bought a pillow to go behind the small of my back and under my legs, knowing I would have to sleep on my back the entire time [I’m a side sleeper!]. The one night in the hospital in March killed my back, so I knew I needed something. My back still hurt by the time I went home, but not nearly as badly. I also got some socks with grippers on the bottom, and some chemical dry shampoo. If someone is going to be in the hospital for a while- these things are all great. I wish I had packed a nice fleece blanket and my own pillow. When I could eat regular food, I was grateful for my husband running to get me my favorite foods from out. I was itchy a lot in the hospital due to a reaction with IV pain medicine and several adhesives, so the pillowcases were super scratchy to me sometimes. I solved that by laying a t-shirt over my pillow at night for something softer.

They took me off my IV after a few days. I was a little itchy, likely due to the IV pain medicine. Liver numbers are expected to be extremely high after transplant, and then drop every day with the anti-rejection medicines. My numbers dropped initially, but rose again after a few days in the regular room. Due to this, I had a CT scan about 1:30 am one morning and had to have a liver biopsy (most liver transplant patients have to have at least 1). They wanted me to have access to IV pain medicine during this and a longer doppler study. Unfortunately, they put me back on the same IV pain medicine, which made me increasingly itchy. I spent one night unable to keep from clawing my skin. I had a cool washcloth, thankfully, that I used to calm my skin. It would heat up and then feel cool again after a few minutes. I did get some Benadryl. After the biopsy results came back, it showed I had moderate rejection of the liver. The doctors solved this by giving me three huge doses of steriods. The dose they gave me at nighttime made me wide awake. I slept pretty well every other night in the hospital. After the first night or two in my normal room, I was only woken up at midnight and 6 am for medicine and labwork. I really hated the lancets they used in the hospital to test blood sugar. That is one of the best things about being home- no more blood sugar testing prior to each meal. My fingertips are grateful.

I am so grateful for the medical team that worked with me. The liver PA that checked me into the hospital and guided us through the first day was with us all the way ’til discharge (except for one day off). He was spunky, awesome, caring-and you would think he had known me personally for years beforehand. All the nurses I had went above and beyond basic requirements of my care and for their job (except 1- but I’m certain there must have been something(s) going on on the floor that took her attention). I loved talking with them and appreciated their concern for me. For instance, I asked one nurse for a hot pack early on. From that point on, she brought me more unasked whenever she came into the room. How awesome! When we saw her on walks in the hallway (when she wasn’t my nurse for the day) she would get super excited at my progress and exclaim how much better I looked! Another nurse turned out to also be a Pastor’s Kid, have lived in Greensboro, and many other commonalities. It was sweet that she took time to have nice conversations with us [I think this came at expense of her lunchtime and dismissal time a lot!].

I’m grateful too for the outpouring of love from those who know me and those who don’t. Whether it was prayer, sharing beads for the awesome representation of my journey, cards, creating or contributing to our you caring site, or many other ways, I am grateful. No major life event goes without wrinkles- and mine have been small ones- but they’re much easier to iron out with the support of a community. For church folks and others that can’t wait to see me, I am working on a means for you to do so. Just remember I am an introvert! This doesn’t mean I don’t want to see you. Being an introvert means you feel all the stimuli in your environment to a greater extent than extroverts. It takes a lot more to process and deal with all of it, and it can be overwhelming. Hence, quiet time is necessary. I have quite a lot of stimuli in my environment with my healing incision and medication, etc. I want to and will see you (as long as you are not sick or might be getting something contagious)! Details to come. We are still also trying to get the blood levels of my main anti-rejection drug to the right level (and consistently).

In the hospital, I couldn’t bear to watch or read the full extent of news stories of more unnecessary, UNDESERVED, horrific deaths of black men, nor of the unacceptable, tragic deaths of police in Dallas. Persons of color and police officers matter- not more, not less- and it breaks my heart when other persons treat these groups as if their lives are worthless, expendable, and not created in the image of our same Creator.

Earlier in the day, Facebook popped up a memory of a status I had shared from a devotional. I broke down in tears trying to read it out to my family, of God’s love and perseverance. The passage linked to it was from Ezekiel 36:25-26 (MSG).

I’ll give you a new heart, put a new spirit in you. I’ll remove the stone heart from your body and replace it with a heart that’s God-willed, not self-willed.

The text isn’t talking about a literal organ, of course. But, I had just had an angry, red, knotty (looking like it was going to turn to stone) liver removed, and a new beautiful purple healthy liver put in as the greatest gift of my life. [You can see pictures-if you want- at the bottom of my Recovery Photos page.] I broke down in thankfulness, thanksgiving and awe. But I also broke down in pain for the loss of lives that occurred that week in the long line of lives that have already been wrenched away unnecessarily. I thought about our hearts’ fleshiness as a nation. Those who have felt as I felt have hearts of flesh. The ‘problem’ with new, fleshy organs is that they are delicate. You have to take care of yourself and them. Each new event is felt and has an impact. But having an organ of stone is a major problem that only leads on the road to death.

I was awake the night of July 7, having had my trip home delayed so that I could receive 2nd and 3rd doses of IV steroid. As I was awake, I prayed and lamented for all those in the past week who never dreamed they weren’t going to get to go home. I read psalms of lament and prayed for my friends of color- especially who are raising children with gorgeous brown skin tones, for my friends and their loved ones in law enforcement, and for the hardness of hearts. The warmth and grace of receiving a new liver and gift of life met cold front of pain and lament and made a storm in my soul. This storm will continue to simmer and drive my actions, this Holy Spirit storm in my fleshy heart. I pray that through the praise and lament, my heart may never be replaced by stone.

The next day, Friday the 8th, I came home. I know it’s hard, but don’t take your bed and a warm shower for granted. These things are glorious!

Since I’ve been home, I’ve had lots of trips to the doctor for regular labs, lots of naps, snuggles with kitties, great meals, and much more. I’ve been taking walks down the street, trying to exercise as encouraged and avoid the bending, pulling, pushing and lifting as instructed.

I got my staples out on Tuesday, a few days earlier than the usual 21 days! I feel very aware of my incision right now, and I know my job right now is to rest, and to be rather than to do (while doing the things I love that I can). Your job, my friends with fleshy hearts, is the same. Grace be upon you, as it has poured out mightily upon me.

Just walked in the door at home with my new liver! Gosh, it feels so good to be home.

I’m sorry for those only connected via blog and not Facebook who didn’t hear- I was called in on Thursday 6/30/16 for my liver, and had surgery as it turned over into the first hours of Friday July 1. Things are going well, and I’ll write a reflection of my time in the hospital soon. It is amazing to have the surgery after 21 days at the top of the list, have surgery be a go after only one phone call to come to the hospital, and to leave a week after surgery.

Now, for a nap in my own, luxurious bed.

I don’t know about you, but when I think of “patience”, I think about it in the abstract. Some lofty quality that helps to characterize you as ‘good’, and really without its context. Patience, endurance… Sounds great.

In an initial conversation with Academic dean Jeff Conklin-Miller about all this, he pointed out that the original meaning of patient is ‘one who suffers’- How odd all the waiting we ask patients to do. There’s that realization that patience is long-suffering.

It really puts the patience of God and the patience fruit of the Spirit in a different light.

^22-25 All around us we observe a pregnant creation. The difficult times of pain throughout the world are simply birth pangs. But it’s not only around us; it’s within us. The Spirit of God is arousing us within. We’re also feeling the birth pangs. These sterile and barren bodies of ours are yearning for full deliverance. That is why waiting does not diminish us, any more than waiting diminishes a pregnant mother. We are enlarged in the waiting. We, of course, don’t see what is enlarging us. But the longer we wait, the larger we become, and the more joyful our expectancy.

^26-28 Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.  Romans 8:24-28 (MSG)

Lots of people have been comparing my waiting for a liver transplant phone call to pregnancy’s waiting for birth. I would imagine that at least in that sort of waiting, you might feel the baby rotate and shift in preparation for birth. Something to watch or feel change, like Kevin’s watching his baby vegetables grow in the garden every day [although the deer have really appreciated the tasty snacks he planted for them].

Really, in the grand scheme of things, this has been a quick process. Three months since it was first identified that something serious was going on, and I’m at the top of the liver transplant list. Pretty quick- especially considering my initial appointment was slated for June 7 for evaluation with the liver transplant clinic.

I’ve actually moved from the anxious, ready for the jack to pop out of the box any second now feeling to something different. It doesn’t *quite * feel real. I know it is- I am carrying my phone around with me from room to room, making sure the volume is on, I have my hospital ‘go bag’ packed [my “I’m an accelerated reader!” prize duffel bag from 5th grade], I pull my car in the garage rather than leave it in the driveway when I get home. It just gets hard to wait on edge. Much better to just go day by day and get on with the business of life.

Except when you get worn out just standing in a checkout line for 5 minutes.

Over the past few weeks, my appetite has tanked again, my fatigue has increased, I’ve had more nausea and pain in my side. I was stunned just how much going to Annual Conference for the North Carolina Conference of the United Methodist Church wore me out. It was great to catch up with friends and meet the interim pastor who will be caring for my flock, but looking back, I should not have gone. I’ve missed a stellar show at the Kennedy Center with my beloved Punch Brothers, Chris Thile, Béla Fleck, Edgar Meyer AND I’m With Her. I also missed a community event hosted by by church, another across the street, and Durham city for our neighbors because I knew it would wipe me out.

Tuesday, I took a short walk after dinner, which has not bothered me in months prior. That night, I woke up with pain in my side and shoulder (referred pain from the liver), like that which sent me to the hospital in March. The brain is getting signals from a low-pain area like an internal organ, and it gets confused. It registers the pain as coming from other nerves that come into the spinal cord at the same time. It can’t be your liver sending me this pain signal, that doesn’t make sense. Ah, it must be coming from your shoulder…

This time, I knew what it was, and was able to take 1/2 of my stronger-than-Advil pain pill that I avoid if at all possible. Ugh.

Then I got to wake up and go back to the oncologist for my 3-month scans. And it all makes more sense. Unsurprisingly, the cancer in my liver has grown. There are more individual spots, others have gotten bigger and some have even started uniting to form bigger blobs.

This is the first time that my lungs have been imaged with anything other than an x-ray as well. Half of the population has spots in their lungs that are <3mm, that are not of any concern at all. I had 3 spots in my lungs. Two the oncologist thought were nothing to worry about, but the 3rd- there might be something to that. It was perfectly round, the size of a pinhead. Too small to biopsy, and nothing to compare it against. I’ve been scheduled for 7 week imaging on August 10. Here’s the infinitesimal, scary part. If I have not had my liver transplant by then AND the spot has grown or others appear on this imaging, I will be disqualified for liver transplant because the cancer is in metastasis. Then we would have to think about chemo and other treatment.  Please don’t blow this out of proportion. According to the UNOS website that maintains the organ transplant list and data, Duke University has done 9 Blood Type B liver transplants in 2016 as of May 31. That averages out to one every 16 days [as if they worked that way]. Today is day 18 of being #1 on the list in the region. It is very unlikely that I will get to 6.5 weeks from now and not have received a transplant. It just does not feel good to introduce another option, even if it is tiny. I am not really bothered by the spot in my lungs itself. It is tiny. Even if it turns out to be something -AFTER transplant, it could be treated by a non-chemo option like burning/ablation.

I don’t know if looking from the outside in whether it appears I have patience or not. I actually don’t know whether I do or not. I wait and endure not by my own choice. I do know there is urgency in waiting in the sure and certain hope that I rely on- the promise of God to redeem all creation, to redeem this flesh, to live into abundant life of shalom. I know I couldn’t do it alone. I know I couldn’t endure if there was nothing to endure for. In the meantime, the smile and embrace of my husband, the cards, the prayers, the empathy [not pity], the jokes, the time… it helps me through the wait.

Me. I’m number 1.

Just got the call from the transplant coordinator, the regional review board approved my MELD score of 28, which puts me at the top of the list at Duke. She said- Be ready! Yesterday, there was a B organ available and no one in the region to take it. Could be a little while, or could be very immediately.

All the feels, as they say. All the feels.

Ahhh! 😀

 

Wahoo! I am on the liver transplant list at Duke University Hospital!

I know many of you thought I was already on it before now, but nothing major goes without wrinkles [like a wedding day! Kevin didn’t get lunch or anything at the reception, so our first stop as a married couple was Wendy’s].

After all my appointments on May 11, the blood TB test came back indeterminate. This ultimately came down to a lab issue, but I had to see an infectious disease doctor to make sure- especially because I had the BCG vaccine living overseas against TB as a kid that can give false positive TB skin tests. Of course, the repeat test came back over Memorial Day weekend.

The other wrinkle was getting my low-grade fevers checked out. I’d had more of them over the past week, and they needed to make sure there was no obvious infection that needed to be treated before they placed me on the list. There is not, so they called me this afternoon to place me on the transplant list! I grumbled a little about this (sorry, dear!), but ultimately I am glad they have cleared my fevers before I arrived to receive a liver and a secondary infection became a concern for the team that might prevent transplant.

I am on the list, so now a request can be sent to the regional board to ask for a MELD score of 28. They have up to 14 days to respond- and 6 of 11 have to agree to the score for it to go into effect. With a 28, I would be at the top of the B+ list at Duke (no way to tell about UNC, who also receives organs in this area). [Hey, I just realized that’s the same score as my age! Nifty.] It should be fairly quick to receive a liver- especially since I could split a large donor liver with a pediatric patient.

My neighbor said the other day: a 28-year-old should not have to be dealing with this, only someone my age! I’d like to offer a corrective. NO ONE should have to be dealing with this. However, since I have to, I can’t think of a better time or place. Married with a strong support system- but without kids to be worried about right now, serving a loving, gracious church who knows how to ‘go with the flow’ [and not thinking about receiving a new appointment as I would be if I had not become a student pastor], on good insurance, at Duke- living in Durham near one of the best medical centers in the country, near the end of my program where I have some flex time, only needing 4 classes instead of 6 next year to graduate…. I could go on.

Wahoo! Yippee! Hooray! Alleluia! Praise God!

 

Two months ago, I was in the hospital; yesterday, I went through the rest of the suite of evaluations and appointments that I needed to be placed on the liver transplant list.

At some point during the day, we found ourselves next to a man in the waiting room. He said he had a transplant on December 23- “A Christmas miracle!”, he said. He looked perfectly healthy and normal. He was pretty sick beforehand- it took him 18 months to get finally get to a transplant- but he still was able to get out of the hospital in record time. Every one is different- but it was good to hear his testimony knowing I am under the care of the same liver doctor and seeing my transplant coordinator embrace him and exclaim, “Look at you! You have color in your face!”

After my 7:30 am 18-vial blood draw, mom and Kevin and I met with liver doctor/medical director, Dr. Berg. He bounded in with jovial energy (akin to Dr. Tague at Wake Forest for the small number of you who know him). He was very clear, put us at ease, and provided the kind of environment that it felt welcome to ask questions. It turns out he was the immediate past president of UNOS [United Network for Organ Sharing] that maintains the national transplant list for all donors and recipients. He spent the last year thinking about equitable distribution of organs and such things- very cool. Using the word ‘list’ is a little deceiving, though. Even though this database maintains national information, organs remain local for most scenarios. [This region is region 11- 5 states including Kentucky, Tennessee, Virginia, and North Carolina, South Carolina. Organs remain in the state unless there is someone in a dire situation such as a newly-transported donor organ not picking up function. In the case of North Carolina, organs in the southwest part of the state go to Carolinas Medical Center, and organs from the other 2/3 of the state go to Duke and UNC- the three liver transplant centers.]  When a liver is available, a pool of local candidates is narrowed to those who match the blood type and size requirements, and from there, a list is generated.

The medical team at Duke meets on Tuesdays to familiarize the entire 30-member transplant team with those who have had a full evaluation done, and to decide the best course of action to move forward (place person on the list, seek more evaluation/clarification about a particular issue, or that transplantation is not the best move for the patient). Since my meeting with the surgeon was scheduled for next Wednesday, I was slated to be discussed the following Tuesday. Dr. Berg had an epiphany that I could perhaps be squeezed in to meet the surgeon while I was already there (even though she didn’t have an open appointment). It worked out beautifully- now I don’t have to return next Wednesday- I get to go to my Wednesday breakfast and have my case discussed one week earlier! After approval by the team, my insurance has to give approval one more time, and then I can be listed.

Generally, people’s bloodwork is evaluated and a MELD score calculated as an indicator of their liver function and health and placement on the transplant list. A MELD in the 20s is transplantable, at 30 a person is eligible for organs of their blood type or type O (universal donor), and 40 is the highest score. For certain liver conditions and for liver cancer, labs do not accurately reflect the liver’s situation, so an exception is granted, and there is a protocol for assigning a score for these conditions. EHE is super rare, while this is an approved condition for transplantation, there is no standard protocol. Dr. Berg will write a letter to the region 11 board to request that I get a MELD score of 28. Out of the 11 reviewers, 6 have to approve the number for me to have this exception (will take a few days, probably- up to 10). If they don’t like this number, he will have to try again with a lower score. Some of the best news of the day: with a MELD score of 28, I would likely receive a transplant within 1-4 months!

This news was while we still believed that my blood type was O (most common blood type: over 30% of the US population). Matching a liver is simpler than any other organ for transplant: only things that have to align are blood type and body size [But if needed, they could split an organ from a very large man in two, for example, and give half to a pediatric patient and half to me!]

We were having a mini-celebration for the timeframe when Dr. Berg stuck his head in the door and said, “Your blood type may not be what you think it is!” Apparently, I have type B blood. This is even better news, because type B blood is much more rare- meaning there is a smaller pool of donors, but there is a much smaller group of people waiting for a type-B liver. So, if a B liver is available in our region, but they don’t have a candidate waiting locally, it is made available to other people in the region.  [Type O livers can be accepted by anyone, increasing their demand, as well as more people are waiting for them.]

I’m super stoked. Everything I’d seen pointed to perhaps waiting up to a year for a liver. I’ve been hoping in my heart of hearts that I could have the transplant this summer, so I could move along with my healing, schooling, and life. I am not making light of this process- it is dangerous, major surgery with many possible complications (many of them occurring in 10% or fewer of patients).  However, I know I am younger, stronger, and healthier than many of the patients that are receiving liver transplants. This increases the risk of things like clotting and initial rejection while they work on prescription levels. But, y’all (no, I wouldn’t say “y’all” in real life, but I will in informal writing), Y’all! I am in good hands all around who know what they are doing. I have a great team, actually have type B blood to speed up the process a little, I never had the desire or taste for smoking or alcohol anyway- nor for food that would now be off limits to me if I ever ate them: sushi, grapefruit, rare red meat, etc. I have will have increased risk for skin cancer on immunosuppressants- but their recommendations were to wear long sleeves (I’m cold most of the time, anyway) and to wear SPF 50 sunscreen or more (which I do anyway or I burn).

In the meantime, I will be working with Duke Divinity to work out plans for next year and the District to plan for Glendale Heights in the coming months.

For having cancer, a rare cancer, and needing an organ transplant- I feel as though I have come out on the best possible side and best possible options for it all. I have a wonderful group of people standing with me, thinking of me, and praying for me- plus God, the Great Physician, the Wounded Healer, the Lamb who is the Good Shepherd leading the way through the shadowy valley to resurrected, abundant life. Rejoice with me! The road ahead will be hard, but I’ve been equipped with the right hiking shoes, provisions, and guides.

 

[Oh, one funny moment: I accidentally said “Tweeter” instead of Twitter, and mom and I set each other laughing for several minutes with scrunched faces. I wondered what the team would think was happening if they walked in and saw us.]

I have an appointment for full evaluation with the Duke Liver Transplant Clinic on May 11!

I’m stoked. I’ve been wanting to write this for almost a month now, but life has trucked on with me barely holding on to the bumper.

They originally scheduled me for an appointment on June 7- which felt like eons away. I spoke to my oncologist- who was actually pleased that it was scheduled so soon. However, he who spoke to the transplant folks anyway, and we were able to get worked in on May 11. The day is full- scheduled from 7:30 until after 1 with labs, tests, and appointments with doctors and other medical staff, nutritionist, financial coordinator, and social worker. I’ll come back the next week for a meeting with the surgeon, transplant coordinator, and any further follow-up that they need. If all goes well, they will place me on the national list for liver transplant.

The most unexpected thing they needed from me was clearance from a dentist. I generally think of my teeth as a completely separate concern from all my other health. I got in to see the dentist, and I get to go back on May 16 to get 7 fillings- tiny places we have been watching for years and would under other circumstances continue to watch. I get the whole morning at the dentist to myself !

My friend’s son has a birthday on May 11. They made him a paper chain to count down the days until his birthday- and so they made me one too! Duke Chapel is having an opening celebration on May 11 after being closed all year for renovation, and I’ve seen a few other things happening on May 11. I feel like everyone is celebrating with me.

In the space of seminary and serving as pastor, I have this weighty and light, terrifying and awe-full call to think of things eternal and regularly live in the tension between life and death and resurrection. It is a privilege and a weighty responsibility to walk with people and their families through the time of death. It takes a whole lot of energy, but in these spaces, God’s presence is palpable.

Two weeks ago, one of the saints of my congregation who struggled mightily in the last year with health problems- beginning with fractures in her pelvis- found out on her birthday that she had 2-6 months to live due to a liver disease she had been living with for 20 years. I had the privilege to share the news on her behalf in our worship that Sunday morning, and the church was visibly connected as the Body of Christ as we laid hands on her and prayed for her journey. This is one of the greatest gifts of the church- to bear one another up, to intercede for one another, to testify against all that would tear us from one another and God. That Thursday after a graveside service for another member of the community, I received the message from her youngest son that she was ready to join the church triumphant. While we visited with her that last afternoon, we were able to sing Amazing Grace with her at her request. The last verse we repeated ‘Praise God’ over and over to the tune. When we finished and I looked over to her to see if there was something else she wanted us to sing, she began repeating “Praise God! Praise God! Praise God!” with every ounce of the breath she had. It was heart-breakingly beautiful. What an honor to ‘Accompany Them with Singing’ into the church triumphant.

I encountered a book at a 1/2-day Stephen Ministry training recently (which I haven’t bought/read yet, but was highly recommended to me) called Don’t Sing Songs to a Heavy Heart: how to relate to those who are suffering. The title has resonated with me- it comes from Proverbs 25:20: “Like one who takes away a garment on a cold day, or like vinegar poured on soda, is one who sings songs to a heavy heart.”

I love music, and singing is a primary form of prayer for me. I need it, I am buoyed up by it. My heart is not heavy, but it is tender. I think for me the phrase becomes transmuted to- listen for and join in the song of the sufferer. I’ve been really aware of my reactions to support that people have offered to me, turning them over and over curiously like a faceted jewel as I ponder why they have produced this particular reaction in me. Sometimes (but not all by any means!) that people have offered a song, or unsolicited health advice, or someone else’s log of their journey with cancer, something in my soul reacts like suddenly pushing a chair back from a table and standing up. I think it has something to do with singing the songs of my heart. This blog is a form of song- allowing me to pour out my heart and experience and share with whomever cares to sing with me- but the song is mine to sing and to form. It changes with time.

As I drove to Greensboro to tell my beloved the results of my biopsy, the song of my heart- even despite tears and a cracking voice was My Heart is Steadfast (Psalm 103) By Ellie Holcomb.

My heart is steadfast, O God
I’ll sing praises up to Thee the among the nations
I’ll give thanks to Thee O Lord among the peoples
I’ll sing praises up to Thee in my soul

For Thy lovingkindness is great above the heavens
Thy truth it reaches to the skies
Be exalted O God above the heavens
And Thy glory over all the earth
That those who love may be delivered
Save with Thy right hand and answer me

[I couldn’t find a YouTube video- you can listen on Spotify, Amazon Prime, or just purchase it…]

This is the song of my heart. Sounded an awful lot like Amelia’s “Praise God”, so despite my broken heart and cracking voice, I could accompany her with the song of the service of death and resurrection. I hope you don’t just sing songs to a heavy heart- I hope you do the hard and holy work of listening with your stethoscope to the song already there- so that you might sing the same tune, or provide harmony support that might take the song to a different plane.

I am thankful for all the ways that my community has bolstered my song. Hugs, flowers, smiles, cute videos, a personal postcard from Hong Kong on the day I went from graveside to deathbed-side, blissful hour of massage, chimes, emails, shared meals. I got a signed CD in the mail from the massively talented singer-songwriter Kristin Andreassen out of the blue- which utterly melted my heart. My District Superintendent Carol preached for me last weekend- a wonderful work of God’s grace in the midst of extra services. I’ve gotten to see my parents while they were in town for Duke Study leave and then the NC Preaching Festival, quite a wonderful gift. I am very aware and grateful for the large support group that I have. I have churches across the nation praying for me! I know well that I have a wider and more active support network than many people facing liver or other major organ transplants. My logistical exercise is not desperately trying to find one or two people to be my caretakers after surgery- my exercise is how to efficiently deploy my network to meet my post-surgery needs. Heart-breakingly beautiful- praise God for my situation, but my heart breaks for those with small or no care network.

Physically, since my stay in the hospital, I’ve mainly struggled with pain in my side, fatigue/headache, and nausea. The pain I’ve been able to control with therapeutic levels of Advil, thankfully, and the nausea medicine I have is spectacular. I still have no appetite, but I am able to eat more normal-sized portions at mealtimes than I was able to a few weeks ago, and I have not had to take my anti-nausea medicine very much at all. I still try to do too much and tire easily. I have to adjust to my new capabilities.

School-wise, with much wailing and gnashing of teeth, I finished my portrait of suffering and artist statement for my Beauty, Suffering, and the Cross course. I am working on finishing my two papers for my Readings in Lesslie Newbigin’s theology course- and am striving and struggling toward having both of these finished by my May 11 appointment. Most of the work has to be accomplished this week for that to happen- Please, Jesus! Then, I can turn toward my directed study paper which I have the summer to complete.

I’m awaiting May 11 with anticipation- with lots to keep me busy and work on until then. Then, assuming I am a good candidate for a liver, it will be hurry up and wait for an undetermined length of time until one phone call drastically changes the character of the next three months. That may be the hardest task of all.

 

We’ve just celebrated the Second Sunday in Easter [which my congregation did in fabulous, joyous, hilarious fashion this morning!], but if you’d like to find me, I’m stuck back in Holy Saturday.

I never thought about the day between Good Friday and Easter morning until I started seminary- not once. To be honest, I think I was just too busy to think about it. My world kept spinning on at the same speed and didn’t stop to enter the strange space that the grieving inhabit. Life and death are undeniably part of the same reality again, and the colors of life look very different- like the surreal coloring that comes with a storm of Tornado potential. The disciples had to begin to feel and grapple with their grief- not something that could or should be avoided.

This year, I felt very keenly in the depths of my soul when people declared ‘Happy Easter!’ or ‘Sunday’s coming!’ anytime before the arrival of Easter morning. I need the declaration and promise of resurrection, or this story or life of ours is for naught.That’s why I crave the jokes, laughter, uplifting stories, and beauty to behold.

But to skip Good Friday and the waiting and grieving of Saturday is false. It’s emphasizing only new growth without death. Do you know what happens when there is growth without necessary pruning and death?

Cancer.

But here I am in Holy Saturday.

It’s been a really strange space to inhabit. It’s bizarre to have to hurry up and wait for some things, and for other parts of time slide through my fingers without awareness (the entire evening feel like twenty minutes..). I’ve dealt with chronic health issues my whole life and I did life just fine, excellently even, despite them. I have felt like I have had great self-awareness in judging my mental and physical state for getting work done- and it’s always gotten done. But for the past three weeks my brain has been operating in first gear. I can’t process and work the way that I have my entire life.

Many recently have commented on my strength and faith in this time, but I have to tell you, it’s not mine. When you are helpless, you have to cling to the strength of another. It’s only when the recovery has begun that the itching at the bandages and the complaining begins- and you’re in danger of thinking that you’re in control of your healing.

I messed up by reading the document found on the Duke website on liver transplantation before going to meet with the liver transplant team. There was some good information that I needed to hear, but I should’ve stopped before the last set of pages. Reading that after transplant, you are transported to Surgical ICU where they outfit you with an IV (of course), a tube running down your nose to your stomach to suck out stomach acid until your stomach and intestines are ready to work again, a catheter, and those bizarre leg things that squeeze your legs to make sure you don’t get blood clots, I was mentally laid low. That is utter helplessness. Even as a newborn I could breathe and urinate on my own. I’ve been already grieving that utter helplessness even before it’s certain that I can have a transplant. I think I’ve been pre-grieving this state. I think I’m grieving in other ways too. One way I’ve identified is the loss of being self-aware in my working. It’s frustrating to not be able to work in the same ways that I’ve worked well before. I know that we’re human be-ings and not human do-ings and my worth does not come from my work, but it’s nice and satisfying to do things. But I have realized, and am realizing, that I am already helpless. I am already, and indeed made to be, dependent on the real source of life. I know all those things and have lived into them in some ways, but there is grieving and pruning to do to participate in abundant life that can’t be avoided.

When I was a kid and got sick to my stomach, there was nothing better at that time of utter lack of control and helplessness than to feel the cool, strong hand of my mom holding my head up and her help to stand and swish out my mouth. The state of my helplessness almost didn’t matter in that moment- what mattered was her presence and the cool hand. For those who look on me and see strength- it is the strong, cool, healing hand of God that you’re seeing, not me. The pain and confusion and anxiety, while present, have really faded into my background a bit or been numbed. But really I continue to see and reach out for that cool hand and cup of water. No, it is not right or wanted by God or anyone else for me to be in this space of sickness, but that’s not what is important to me right now. What is? The sips of cool water that are being in the Duke Healthcare system already, a pathologist that knew enough to find and name my condition, cancer confined to my liver and living in a time where transplantation is even a thing, the Affordable Care Act that limits my out-of-pocket medical expenses, being past the core courses at Duke Divinity that are especially exhausting and tedious, my sweet husband’s care, having great support networks among family, friends, clergy colleagues, church family, and the Divinity School, cups of soup and other offerings from the ones who love me.

 

So no, I am not scared, I am at peace. But it’s not my peace, it’s not my faith, it’s not my hope- it belongs to God, and I’m simply giving into (or trying to) my state of helplessness and dependence. I am NOT excited, but I am not filled with fear. In the Garden, Jesus prayed for the cup to pass- he wasn’t excited to drink in death and despair- it’s awful on a much greater scale than drinking magnesium citrate. This God, whose hand I am resting in, is not a God who waves a ‘magic wand’, or who avoided Good Friday. This is the Good Shepherd that seems to demonstrate the only way to deal with these things is to go through them to the other side. Saturday isn’t bypassed either. There is painful and itchy grief and healing in this place, but also cool hands and cups of water. The waiting and the healing is frustrating, but I know moving too quickly means that I won’t fully heal, or causes new, uncontrolled growth that got me to this place to begin with. I think God will set the right pace through the valley.

 

Life is surprising.

I woke up early on the 11th with pain in my right side I was sure was due to kidney stones. I slogged through for about two hours before I woke Kevin up to take me to the ER.

When they did a CT to look for kidney stones, there were none. Instead, there were some nodules on my liver, suspicious enough to do an MRI. The masses were suspicious enough to do a biopsy.

All the signs pointed away from cancer, and toward something like a medicinal side effect. That is, until they didn’t. I went to my follow-up appointment expecting pathology results. They weren’t ready due to some special staining- and it didn’t look like the nodules were due to medicine anymore. It turned out to be a rare cancer.

Today I met with a sarcoma specialist at Duke Cancer Center: Richard Riedel. Sarcomas make up 1% of cancers. EHE belongs to a class of usually slow-growing cancers, so chemotherapy is not effective. Honestly, I am grateful to not have to face the road of chemotherapy that so many people have to go down. No one should have to feel that sick for so long.

Since I only have one set of scans from my recent hospital stay, there is no way to identify how long this cancer has been active, or how quickly growing it is. I’ll be going back for scans in three months to begin to get some of this information.

In the meantime, I’ve been referred to a liver transplant specialist. When they were doing a biopsy, I was under the impression that I had about 5 masses on my liver. I was stunned today when the doctor showed us the MRI imaging. He said he hadn’t counted them, but if he did they would number between 20-30. They were large and numerous.

The great news in all of this is that the cancer seems to only be in my liver. Even better news- if I am a good candidate for a liver transplant, this is a potential cure (not a word spoken lightly by cancer doctors!).

Grace abounds: with my loving, sweet husband, my caring friends, my loving congregation at Glendale Heights UMC, and with my professors. This Holy Week, I am thankful to know and serve God who came in flesh to feel and condemn the cancers of body and soul and relationship that would divide us from one another and from God. On the cross, with the pain in his side, the pain in my side is condemned.

Friends, loved ones, and people I don’t know- please do not tell me you’re sorry. I know you are. This is not the way that life should be, this is not God’s will for me or anyone. None of God’s purposes require my pain to be fulfilled.

Please do lift prayers for me. Please allow me to do what I can do and feel like a normal, contributing member of the human race- but please help me rest and delegate and not push beyond my strength.

I have celiac disease as well, and can’t have gluten (wheat, rye, barley, and oats in my case). I know many people’s impulse is to help provide food, but gluten-free cooking is not for the faint of heart, I can’t risk cross-contamination, and sometimes I can be a picky eater, sorry. So- don’t try to provide me food. I will take jokes, cute animal videos, extra trips to Massage Envy ;-). I will take your stories of hope and stories of pain that take me out of my own difficulties.

The day I received my diagnosis, I read in my devotion these words from 2 Corinthians 1:

³ Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all consolation, ⁴ who consoles us in all our affliction, so that we may be able to console those who are in any affliction with the consolation with which we ourselves are consoled by God. ⁵ For just as the sufferings of Christ are abundant for us, so also our consolation is abundant through Christ.

¹⁰ He who rescued us from so deadly a peril will continue to rescue us; on him we have set our hope that he will rescue us again, ¹¹ as you also join in helping us by your prayers, so that many will give thanks on our^[b] behalf for the blessing granted us through the prayers of many.

 

On God I have set my hope.