She's too young for an appetite stimulant, she says. "I'd rather you add tofu to her mac and cheese. Things like that. I give it to all my athletes. It adds protein and calories."
I try to listen to every word, whilst keeping the other three controlled, and the patient herself sitting squarely on the examining table.
But we don't eat mac and cheese, I want to say. I don't buy food in boxes anymore. And homemade? It's not the same.
But what's the point? She doesn't get it.
My daughter has no appetite. She won't eat more than a couple bits of anything. I'm the one who has to look at her pencil-thin frame in the bath every night.
The opthamologist, a smart guy people come from around the world to see, told me cancer and inflammatory patients get an incorrect "I'm full" signal from the brain. People expect it in cancer patients, not inflammatory ones, he says, but it can occur in both. Ask the rheumatologist about an appetite stimulant or for a referral to an endocrinologist, he advised.
But this woman, a nurse practitioner we had to see because I had to cancel the other appointment, she says this must be his own theory. "We don't have these problems in the patients who just take anti-inflammatories. Now our patients on methotrexate, which is a cancer drug, they get nauseated on the days they get their shots. They have appetite problems because of that. He must be thinking of those patients."
This, she tells me, after the doctor herself--this woman's boss--switched Beth's medicine at our last visit, "because it was probably making her feel too full." Beth had lost two pounds in six weeks, and in the last two months she only gained a pound back, probably from the prednisone.
The opthamologist's explanation, it makes sense to me. This is what we see. She is full too soon and doesn't get hungry soon enough. Adding higher fat foods helps some, but not significantly because she won't eat enough bites.
Next, a surprise. She needs blood work. The last thing I want to hear, after all the stress leading up to this appointment. I just want to go home, and the kids do too.
How many elevators do we take to get to the lab, he asks. "Will they get stuck?"
I give him my dutiful answer. "No, everything is going to be fine."
She refuses to be distracted and looks right at the nurse giving the needle, while two viles fill. She cries and doesn't stop.
Finished for the day, we go out the front door and in an angry fit, she rips off the pressure bandage.
Why didn't they just put on a bandaid, I wonder angrily.
She cries all the way home and I wonder if her arm might be spilling red, under her jacket. I should have gone back, I tell myself. Asked for a bandaid instead.
But Beth wouldn't have entered that door again. Not in her state of mind.
Will she remember this six weeks from now, when we're due back? Will it be hard to get her here from now on? Is her love affair with the medical profession over?
I wish we could have gone somewhere else for the lab work, and not this hospital where both her eye doctor and rheumatologist work.
It's a long ride home, angry tears still spilling.
Back home, she nurses on the couch and we both destress.
Her older brother, free from elevator worries for another six weeks, blows off steam. He feels free. Unencumbered for the first time all day. The noise he makes, I try not to let it upend my nerves. His hyperactivity blows in full force.
My heart aches for my nursling, but as I see her sorrows melt away in my arms, I'm grateful to God for the comfort of a mother's breast...for the hundredth time since the diagnosis. Seeing how I can comfort her? I know it's His grace.
She falls asleep at 5 in the afternoon.
And I just sit there cradling her, wondering what to do about dinner. As Peter asked me time and again if the elevator would get stuck, I didn't think about thawing anything.
I should have been more aggressive with the nurse practitioner...trying to help her understand that my daughter is too thin. I know my husband will say this. "You have to be more aggressive with them. Get the answers you need."
Yes, but what about the other three fidgeting in the office the whole while? They're a distraction.
I ask Paul for my purse and call him. Husband says he'll make dinner tonight. I should just comfort Beth, who still suffers from a head cold. It will be a late dinner, but we'll survive.
I don't know what to do about anything...about Peter, about Beth...I have no answers.
But watching my girl sleep in my arms? Her eyelashes resting on delicate skin? It reminds me of what He wants from me.
Snuggle in. Trust and abide.
Receive My peace, in the same way Beth receives what you offer. Be as a babe in My arms.
