"On Memory and Muchness" or "My Interpretation of the Jabberwoky Poem"

I woke up at 2am this morning and, for the rest of the morning, drifted in and out of light sleep, unable to control my thoughts. I gave up on sleep and decided to get in the shower at 4am. I needed to be up in an hour, anyway. After donning my robe and toweling off my wet hair, I laid back in bed, unable to move. I was paralyzed by fear, possibly, for the first time in my life. I did not have the strength to continue with the day's plans.

Just two days earlier, I had received a call from Kai's nurse at Georgetown that her liver enzymes from the day before had come back elevated. They had, in fact, tripled since her blood draw the previous week. They feared she was heading into rejection. We needed to double her immune suppression and bring her back in to be retested after 24-hours. If her numbers were still high, she would be admitted for a biopsy of her liver to confirm rejection and corrective measures, if needed, would ensue.

For a transplant patient, the word "rejection" holds much the same connotation as "cancer". It can happen at any time, post transplant and have many different variables and outcomes. Often, rejection can be treated and reversed with an increase in immune suppression medications. Once a patient is farther out, the risk of more difficult kinds of rejection increases. Sometimes, it requires another transplant. Sometimes, rarely, patients develop certain antibodies that decrease the chances of finding a match to a single digit percentage... 3%. 1%. Or less. 

Normally, I can push these thoughts aside, let them go and the fear that comes with them. This morning, one of many similar mornings that I had to get up early to make the 2-hour trip to Georgetown, they lingered... as did my fear, until it became immobilizing. I feared the possible outcome of the test. I was frozen in unknowing and I was terrified of the knowledge that might await us and the subsequent repercussions. The fear of going through transplant again... or worse: not having that option.

I'd lost my muchness and I had a Jabberwoky to slay.

I knew I needed to pull myself together before the kids got up. Kai didn't need to sense how scared I was. She needed me to be Mommy. So, after a good cry (and some encouragement from the Mad Hatter... er, my husband), I got out of bed and finished the preparations for our trip, which included a packed hospital bag - standard procedure - just in case. 

After the blood draw, we waited. A dear friend met us there and waited with us. Then, the call came... Her liver numbers had decreased significantly enough that the doctor didn't think it was rejection. Instead of feeling elation, I felt relief and emotion flooded out of me. This time, she was safe. 

Kai will remain on the increased immune suppression and will receive weekly to bi-weekly blood draws and tests to keep an eye on her liver numbers. If they go down quickly enough, they will start backing her off of the higher dosage with close monitoring. If not, they will keep her there and possibly add more medications. 

...And we came galumphing back.

(Jabberwoky Poem - by Lewis Carol)