An Uneasy Calm
Hello, everyone. I know I’ve been pretty quiet the last few days since Ana’s been home. I am experiencing such an incredibly wide range of emotions that I am almost paralyzed. I think I may have actually been rendered speechless by the events of the last two weeks which is pretty amazing for me. I mean, I’m perpetually drowning in a billion words, but the are all churning around in my head – cluttering up my ability to think straight.
First, the important stuff. Ana’s doing well. Her mood is pretty positive, although she is feeling the strain of cabin fever and also really starting to miss her friends. I scheduled the first tentative visit for next Sunday. I think she can handle short visits right now, but she doesn’t have the stamina to handle more than a couple of hours with anyone. It’s uncomfortable for her to sit up in a chair for any length of time and she gets exhausted standing up too. She has to rebuild the muscles in her abdomen – her back hurts her when standing up for too long. During the first couple of days home, she had a hard time going up the stairs. That seems to be improving – she’s going up and down more often, and with more confidence.
She is frustrated with her body’s limitations and it makes me angry (at no one in particular – just the universe, I guess) that my 11-year-old has to hobble around the house like an old woman, taking frequent breaks and napping in the afternoon because too much movement exhausts her. Then there are the pills. There are so many of them! But Ana can literally take 11 pills in about one minute. One minute! We downloaded a pill management app called MediSafe which helps us keep track of what pills to take when.
This application is extremely helpful because it’s a visual pill organizer and you have to manually check off the pills as you take them – if you don’t, it makes your phone buzz and shake until you check the pills off. There are three anti-rejection medications that Ana needs to take at the same exact time each morning and evening (9:00 a.m./9:00 p.m.) Missing a dose is not an option – any missed doses increase the chance of rejection. One of the drugs is our old friend, Prednisone. This is causing the same cravings she had when she took it a couple of months ago, but this time her diet is restricted. She can’t have too much salt, fat or sugar.
Ana still has the ostomy bag on her abdomen (it’s just stuck there with adhesive and can be removed anytime). It drained a lot less today and we’re hoping to see less fluid tomorrow so we can switch to the smaller bag and, eventually, no bag. Eating anything high in fat makes her abdomen drain more – I don’t completely understand why, but it has something to do with how fats are processed in the liver and the fact that Ana no longer has a gallbladder to store excess bile. Don’t quote me on that though, because I may be muddling the relationship between the fluid and the food.
I’ve been thinking, lately, that this seems like the hardest part of Ana’s journey towards healing. At least, for me. When we were waiting for her diagnosis, then starting chemo, then going from physician to physician trying to save her liver, then finally ending up at Columbia Presbyterian and getting her on the transplant list – I was COMPLETELY focused on those things, right then and there. I worried about the surgery and post operative period, and the adjustment to anti-rejection medications but it was easy to bury that worry beneath the avalanche of other crap that needed my attention. But now the drama and intensity of the last couple of months is over and I’m left with what feels to me like a precarious reprieve.
I want to skip around the house and feel nothing but joy. I want to feel overwhelming gratitude and wonder at the gift of life that’s been given to Ana. And sometimes I do feel like that – like when Ana smiles at me, or plays with her sister, or seems content and happy to be home. But, I’m also feeling a tremendous amount of anxiety and depression about this new normal (there’s that phrase again!) Like I’ve been swept over the side of a massive waterfall – ridden the churning waters to the bottom to miraculously survive, only to encounter a completely different world. One that’s full of snakes and poisonous things. Quick sand and pirates. Monsters that can swallow you whole.
I feel Ana’s vulnerability like a physical thing. Her dependence on anti-rejection medication and what that means is finally hitting home. It will put a strain on her kidneys. She has a much higher risk of skin cancer due to sensitivity to ultraviolet radiation. She can never drink alcohol because it effects the metabolism of the anti-rejection medication. She can never travel without her medication – medication that is going to cost roughly $10,000/year.
We are all at the mercy of our insurance companies. But this kind of chronic illness – this kind of borrowed time – doesn’t come cheap. I am walking around in a haze of anxiety for Ana at 20. Ana at 30. Ana at 50. I want to be grateful for this second chance – and I am…mostly. But I’m also scared for my child – out there in a world that may not have the same level of compassion for a 30-year-old transplant recipient that they do for an 11-year-old. She will need to be so strong. I know she will be, but still I worry.