Last night, I started making a list of all of the things that I “strongly dislike” about being in the hospital:
- thin, rough toilet paper
- the food
- shower heads I have to hold myself
- fridge food thieves
- “need-to-know” basis
- expensive everything
- the IV beep
- brain fog/the funk
- I dislike having to wash my hands after every time I touch my husband.
- I dislike drinking ungodly amounts of ginger ale and taking repeated doses of antacids to help fend off a stomach bug.
- I dislike when people “like” my Facebook status that shares our woes. I want to know they support us and are reading my updates, but really? Do you “like” that we’re exhausted, and homesick, ready for this to all be over? (I realize it is probably just the way they are showing us support, notifying us that they read the update and are rooting for us…but geez. It hurts.)
- I dislike the nonchalant comments people throw our way…the “no big deal” statements that are merely attempts to not face the reality that they in fact do not know what we’ll be like next year, or that they don’t want to think about possibilities other than us being well. (“You’re gonna be fine!” and “This time next year, we’ll be [blah, blah, blah]!”) Empty reassurance. Stop making statements/promises that you have no control over and just be with us.
This morning, I woke up and felt particularly overwhelmed; I slept quite a bit, but still was very tired and fatigued. My throat stays scratchy and my voice fades in and out, my moods are unbearably erratic, and I worry about my heart rate. I started researching “thyroid” and “endocrine system” because I’m convinced that there’s something in mine that’s out of whack. Mitch was still up and down battling the stomach bug he acquired through lack of an immune system last week. He’s gotten new antibiotics, platelets, and blood this morning. After crying and journaling about how much I wish he could hold me and tell me everything will be OK, my mood changed and I was able to cope with today a bit better. We were able to talk and not worry about dealing with “the bug” for a while. Then, right before dinner, the nurse brought him a Flagyl pill. He took it. Almost immediately, he got “mosquito bite” welps and his stomach was in knots. After he threw the pill up, he didn’t feel much better. After some poking and prodding, the doctor on call decided it would be best if he had a CT scan done to make sure his insides are functioning properly. We’ve just returned from the scan and he’s had an Ambien. Lord, let him sleep.
At this point, I am beyond frustrated; I am angry at the progress this has disturbed, at the pain this nonsense is causing him. I am perturbed at having to wait and wait and wait. I can not stand watching him twitch after taking Phenergan. I am livid at the way this disease makes him feel, the way it makes others perceive him.
He is not “the guy with leukemia.” He is my husband. He is Mitchell Lee Nail: broadcaster, runner, friend, believer, lover, brother, son, uncle. He likes Lord of the Rings, Wings to Go, being outdoors, sweet potato pie, Andrew Peterson, playing guitar, and the Bridge… He likes to talk sports and agriculture and music. He is my soul mate. Some day, we’re going to have a puppy, probably a beagle, and a stamp from a foreign trip in our passports. We’re going to love people together and serve and grow. We’re going to sit in our new swing and smell our yard. We’re going to have cookouts and dance parties. We’re going to open our spare bedroom to friends. We are going to live.
Right now, that’s what I have to hold on to. Some day. Or maybe tomorrow. Yes, tomorrow will be better.
So please, know that we are still people. We are still ourselves. Cancer is overwhelming; it has consumed our life together. It would be nice to not be constantly reminded of the four walls between which we are confined…to have a little escape.
In the meantime, forgive me for my venting and know that we do love you. Hope is not lost. Instead of giving leukemia all of our attention and worry, we should probably be more focused
on a legacy.