Sunday, June 14, 2015

Day +11

I debated blogging tonight, and finally decided that I needed to uphold my promise to myself to create a record of this experience. Right now I am what you might label an extra touchy, oddly moody, exuberantly angry Debby Downer. Sounds like a fun blog, eh? It's amazing what a few weeks stuck in a hospital room can do to a kind, happy spirit. Especially with some terrible nurses, P.A.'s, and doctors thrown into the mix. I swear the first week and a half of my stay I had the best nurses, the funnest P.A.'s, and the nicest doctors. But the A-Team has apparently been rotated to other patients and I am now stuck with what you could kindly call the B-Team. If I have to deal with my P.A.'s smarmy little face one more morning, I may punch it. And if I listen to my current doctor call me "boring" and laugh to herself at such a stupid joke one more time, I might cry.

And the nurses? Wow. Getting a bad nurse means having a bad day, because she is there ALL DAY. My nurse this morning woke me up at the crack of dawn, proceeded to do the most in-depth physical any nurse has ever done on me (are your teeth always yellowish with some white? Why yes, thank you, I was going for that mostly yellow teeth with a knock-off whitening kit look. Is your skin always red and dry? Yes, I've been told it's the radiation, it's almost like I glow, don't you think? By the by, what, exactly, does this have to do with the transplant?), and then lecture me on the fact that I like to be unhooked from the pole between medications. This gives me the majority of the day free as I get medications about every four hours. No nurse--none--has ever had a problem with this. My nurse today felt the need to let me know that it is an infection risk every time she unhooks my central line from the main tubing, and that she generally prefers to leave patients hooked up as much as possible to negate that possibility (a.k.a., I don't want to do anything more than necessary throughout my day, and it is so much easier to just leave you hooked up and only come in every four hours or so). Oh Lord, give me strength. The days are getting really long.

Yesterday, rather than writing a blog complaining about how upset I am with the people around me, I decided to read all day long (and well into the night). It was wonderful to immerse myself in someone else's writing. Before starting this blog, I had not written a thing for almost two years. I felt burnt out, and very inadequate. Reading another author's work generally intensifies these feelings, and I content myself with enjoying reading the written word rather than creating it. But today I read a book called Holy the Firm by Annie Dillard. It's not a book I would recommend reading unless you are an English major or weird literature nut. It's the type of book that only some people would find entertaining or interesting, because it really has no point other than to be full of beautifully crafted words and sentences that may or may not really make sense with one another. But it happens to be the type of book that can inspire other authors to write, rather than dry out their creative juices. It was particularly interesting to me because the author writes the book almost entirely from the viewpoint of sitting in one room and looking out a window. Very akin to my own situation. She describes the room as such, "But this room is a skull, a fire tower, wooden and empty. Of itself it is nothing, but the view, as they say, is good." How perfectly Annie describes my surroundings.

Anyhow, I loved it. I underlined passage after passage and was absorbed by the conveyance of emotion through seemingly random sentences and thoughts. This is how most writers think, I believe. I truly compose my best works in my head, in small snippets that are unrelated, all throughout my day. They just never get written down. This author managed to pen them all and put them together. Which is why I gave up writing. Because I don't have that spark that sticks words together like honey in such a fashion that makes a reader stop in awe at their sweetness, and possible deeper meaning. I just write, which is not sufficient for authoring books or being a creative master. But I am also rarely precise and always long-winded, which also removed me from the technical writing realm. So here I am. An accountant. Obsessively pouring over weird English books that no accountant should appreciate. Life is funny like that.

I have absolutely nothing but time on my hands. My P.A. told me this morning that this is the time doctors worry about depression setting in for patients as they are just constantly waiting for their bodies to start working, but they feel incapable of doing anything and very sick of being cooped up. I think that's a fair assessment. I try to keep my brain occupied by books, shows, and thinking, when I have nothing else. Mostly, I think about how far I have come in the last 12 years. I went from being a rebellious 15-year-old to a terrified 17-year-old on death row, to a wife, to a mother (with a month's notice), to a student, and finally, to a master. I did not think I would live to see 20. I never imagined I'd be married at that age. Once I was married, I never imagined I would have children. I never dreamed that I would be an accountant, or that writing would not fill my days. I never could have guessed I would endure not one but three of these transplants. And yet, I am happy. I am thankful that God's plans were better than mine. The life He has given me is so much more than the life I dreamed for myself. It has been harder, but it is a richer, fuller life that is utterly encapsulated in love. And I am proud of who I am, and what I have been able to achieve through His strength. I wonder how many people, if they really stopped to think, would be awed at the life God has chosen for them.  

One of my favorite passages in Holy the Firm was this, "The joke of the world is less like a banana peel than a rake, the old rake in the grass, the one you step on, foot to forehead. It all comes together. In a twinkling...One step on the rake and it's mind under matter once again. You wake up with a piece of tree in your skull." This sums up life to me. It is rough, and unexpected. It is not a simple slip on a banana peel, but rather a good thwack to the head now and then that gets us going back on the right path, or puts us down for good. I would rather take the thumping, kick the stupid rake out of the way, and keep going.

I have a saying written on my wall that I stare at constantly throughout the day. It says, "Sometimes God moves the mountain, and sometimes He says, 'Take another lap.'" I have it written down firstly because it is very applicable to the many laps I take around the 8th floor of this hospital every day. Secondly, I put it up to remind myself that God does not always move the mountain, regardless of my faith. I used to think my cancer would not go away because I did not even have the faith of a mustard seed. Obviously, if I had such faith, I could tell the mountain to move and the cancer would be cured. I realize now that there is nothing in the Bible that says the mountain will be moved immediately (or at all, if not in accordance with His will). Sometimes, we just have to take another lap. And sometimes, that seems impossible. Even after looking at how far I have come and how well He has cared for me, I am still fearful of the future and broken by this procedure. I feel like a long, happy life is unattainable. But He just wants me to take another lap. I just have to take the first step. And every long, lonely day in this hospital is another step. And when this is done, I am going to tell that mountain to move, and I believe that it will.

So I am angry. I am emotional. I am lonely. I am frustrated. I am worried. I think life is mean and takes too much effort. But I am also resolute. Determined. Motivated. Held. Loved. Protected. And I know that life is beautiful and worth the work it takes to make it so. I plod on. My counts are no longer falling, but they are not yet rising. I have nothing to do but pray and take another lap. And apologize for the incongruity of this post; I blame Annie. And while she would have written it much more eloquently, my work is still more comprehensible, I think, so there's that.

As a side note, I have received piles of letters and cards and I cannot say thank you enough to everyone sending them. Each one makes me smile and feel a little more human. They may have actually saved a few lives on really bad nurse days. :-) Signing off from room 812 once again, goodnight.


  1. Not every day can be an adventure. But when we look back on them, they all are.

  2. As usual, I'm moved to tears by your blog, thrilled by your writing, praying for your suffering, and relating to your words. How often I've read great writers and thrown my own pen away - "I could never write like that!" I tell myself. Then someone reads something I've written and tells me how it helped them thru a problem, made them laugh, or encouraged them, and I pick up the pen again. "Even if I don't write like the masters, at least I can help someone!" I'm sure your words are even now helping dozens of people who are going thru similar traumas, so keep them coming! I've often said that I can't write poetic, beautiful prose - I'm more a Norman Rockwell who just paints life like it is. And God can use both kinds! He needs the Annie Dillards to challenge the word buffs among us; he needs the Rockwells to paint an easily understood portrait. Maybe that's our calling in life, yours and mine, just to tell it like it is with a bit of humor in an easily understood format, you reckon?? Love you!!