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!