Visit Day Nine

6 Dec 2006

Today was a great day from my vantage point. For my daughter it seemed quite a bit worse than yesterday.

She was in good spirits when I arrived. Michelle from OT helped me bathe and dress her, and by the end she was feeling nauseated. The nausea never really lifted all day; headaches drifted in and out, and she felt weak.

Despite the nausea, Sarah from PT went through her exercises with her and even got her to sit up and stand, briefly, with support.

Her herbal supplements were approved by the hospital pharmacist.

She asked me to help her roll onto her left side. It’s easy to roll onto her right side using her left arm to pull her toward the bed rail, and that’s how she usually lies in bed. To roll left, she’s needed someone to coordinate getting her legs, hips, and shoulders aligned properly.

I want her to be able to do it herself.

I lay next to her in bed and imagined not being able to use my right side to help me roll onto my left side. You’d need to hook your left foot under your right knee, pull it up, and slide your left leg under your right leg to get them exchanged. You’d also need to get your left elbow under your left side, and use it and your left leg to push up your hips so you could turn. I tried it.

She just wanted me to help her, and she didn’t want to try it, but she did. I told her it wouldn’t work the first fifty times, but she had to practice it, just like riding a bike. After two tries, she was able to get her left leg under her right one and lift it off the bed to pull up her right knee. She’ll need more strength to do it all, but it’s a great start. I was elated!

Buoyed by this success, I canceled the stretcher that’s been carting her to and from radiation in the afternoons. They take her under the building, through the basement halls. It’s easier for them to move her on and off the radiation platform that way, but that’s no reason to do it.

I got her up into her wheelchair and bundled her into my coat and her blanket and hat; we wheeled out into the sunshine, across the parking lot to the radiology building. It’s positive all the way around: no more waiting for transport to get her or bring her back (yesterday they picked her up early, and we waited in radiology for 40 minutes before her treatment; we waited 20 minutes afterward for transport back). A few moments outside, breathing fresh air, soaking up sunlight. And best of all: 20 minutes to dawdle around downstairs on the way back; she’s already signed out, and Ashley told us to just take some extra time, do something fun.

Today they had a book sale in the lobby. We browsed that during our 20 minutes and she found a picture book on horses. She was smitten. I bought it for her, an early Christmas present.

The radiation women were slightly taken aback by her being in a wheelchair, not on a stretcher, but they gamely got one of the men to help us lift her onto and off of the platform. I am more than prepared to seethe, scathe, and breathe fire and ice if anyone complains or tries to thwart this plan.

I’m exhausted. So many little things have to be repeated endlessly; at least I’m not hoping for different results. There’s no one to yell at, no point in complaining. No one is being negligent or surly. Everyone is friendly and working very hard and ably. The little things just get lost in the shuffle. Twice a day I have to tell them she can’t swallow the Septra, they’ll have to crush it into some juice for her. Every evening we start the sleep dance at 7:30 or so, calling the nurse to make sure her sleep meds arrive at 8 PM as they should. Every night it’s 8:30 or later before they do. I say, remember not to take her vitals in the middle of the night; it’s in her chart. She’ll be unhooked from the IV tonight, right? It’s in her chart, she doesn’t need fluids at night. Always it’s “oh, I’ll check that” and depending on who you’ve got, it may or may not go that way. I don’t fight it; I remind, but I don’t argue. I’m not going to alienate people who are already on our side.

Visit Day Ten (early morning)

7 Dec 2006

I’ve just showered, and soon I’ll be going out to the kitchen, getting the health shake and coffee Dave made for me, and riding with Rita to the hospital.

I wish I could go home. Not especially right this second, but at moments throughout every day. The way I miss my children leaves a tender place, full of melancholy that rises up like a tsunami in stiller moments of the day.

Visit Day Ten (the rest)

7 Dec 2006

The morning was terrible, but the late afternoon and evening more than made up for it.

She was hopeless, helpless, and surly when I arrived. Frankly, she seemed depressed. Staring at nothing, answering every question with “I don’t care” or “whatever.” I was pushing her to help herself and it wasn’t helping. I felt like the nurses thought I was being harsh (which may or may not be true).

Then they informed me that for “safety reasons” she would have to go over to Radiology on a stretcher after all. The first explanation was that she could fall out of her wheelchair on the way over there. When I pointed out that she could fall out of her wheelchair at any time and there didn’t seem to be any reason going to Radiology would make that more likely, they said it was because staff might fall on her getting her onto the platform. Whatever. What it really is, is that it’s easier for them to get her onto the platform. I have no argument with that; it’s true. So why can’t they just say it?

My seething, scathing fire and ice was no match for hospital bureaucracy. Only the nurses were as bummed as I was, but they have no clout in matters like these.

The afternoon took a major upturn after her radiation. She was feeling good and wanted to go to the café and eat. We had to see her radiologist first (why escapes me; he just saw her two days ago), and he kept us waiting. She got angry and said “I don’t have time to wait around for him. I have better things to do.” That’s my girl! I asked a passing nurse how long he’d be and explained that my daughter was anxious to get back and do something while she still felt good. The nurse went to find him; when she returned, she said “I’ll wheel you back. He knows where to find you.”

(I told you nurses are really angels.)

We got her into her wheelchair posthaste and scooted down to the café, where we both ate spaghetti and meatballs (not half bad). She sat in a real chair at a real table in the café. It was great.

She refused her last milk thistle dose of the day (“it’s too nasty, and I’ll gag”), but she got all her other herbal supplements.

I asked her how she’d feel about me going home for a while, and coming back with her stepfather and her brother and sister at Christmas. She said that would be fine.

I could fly home Saturday; my parents are coming up then and staying through Monday. My husband’s parents, who have been incredible grandparents to her since they met her at age five, are flying in Tuesday for a week. I’m sure my parents would come back after that. She’ll have someone with her all day, someone to look out for her, until we return at Christmas.

My heart is giddy at the thought of going home, but is it the right thing to do?

I shouldn’t drown in her situation; I have to take care of myself, too. And I do have a family across the ocean, other children, only six and seven years old. If she’s fine with it (and believe me, she’d tell me if she weren’t), it’s probably the right thing to do. For me.

This won’t be over in four weeks, on January 2 when her radiation ends, nor on January 6 when her chemo ends. Assuming all goes well, she’ll get chemo—much more potent than the chemo she’s getting now—every 3 weeks for a year. We will be visiting her quite a lot in 2007.

Visit Day Eleven

8 Dec 2006

What a marvelous, magnificent day. It’s quite possibly the best afternoon and evening we’ve ever spent together.

The morning started out terribly, of course; she felt miserable. The upturn came earlier today, however. Ashley (magnificent, marvelous Ashley) removed the needle from her port at noon, and Jan and Michelle from OT helped me get her into the shower. Then they left us to shower together. After we got her dressed, she sat in her chair and talked with Katie from the hospital school about Punnett squares. Tuggy came to get her for her 3 o’clock radiation at 2:15; I sent him away. (I know he fully approved; he’s been telling me for ten days to wheel her back on my own if they make her wait.) He returned a few minutes before 3.

Radiation went smoothly and she was in good spirits after. We didn’t have to wait at all for David to transport us back. Then we whipped her back into her wheelchair and zipped down to the café for dinner at 4:30 PM. She sat on the booth side of the table this time. We ran into Katie from the hospital school and chatted with her while we ate. We cruised the book sale again and got a painting set. Back in her room, we both painted; then she drew from her horse book. We played at least seven games of cards. Truly, we’ve never had so much fun together.

Ashley stayed fifteen minutes late to reinsert her port needle. It was a breeze. My daughter was astonished at how painlessly it went. Ashley gets called to other floors to reinsert needles; she’s very good at it.

My daughter wanted me to stay in her room for the night, but I said no. I need the two hours away every night and every morning to refill.

My six-year-old told her father, “I can’t remember what Mommy looks like.”

Said father bought me a ticket to fly home Saturday. We’ll all return on Christmas day. I’m elated to be going home, and I’m unhappy about leaving. A textbook catch-22.

My ex-husband called and exploded at me on the phone for leaving; he’d heard from my mother before I’d had a chance to call him. I suppose he has mislaid his understanding of the fact I’m here for my daughter, not to make his life easier. I told him to calm down; I’d arranged for someone to be with her every day until we return. He yelled that none of those people could handle the doctors. Funny thing is, there’s very little doctor to handle on a day-to-day basis. I’ve barely seen doctors, and when I have, it’s been for a very short “just checking in” chat.

I think what’s really going on is that my being here alleviates his discomfort at not being with her. Up until this past Monday, he had no job, and his mother-in-law was visiting (for weeks) to watch the baby. He lives literally twelve minutes down the road. He could have done what I’m doing; he could have really been there for her, hour in, hour out. But he didn’t. He never has. It’s not that he doesn’t love her. He just isn’t equipped for these things.

Visit Day Twelve

9 Dec 2006

A middling day. She had periods where she felt pretty good, but nothing as dramatically effusive as the past two days.

She asked again if I’d spend the night; again I declined. She got upset with me and refused to understand that I have to pack, to get my things before flying home tomorrow. That’s not entirely accurate; I don’t think she refuses. I think she just doesn’t understand.

Her throat was very sore today, more so than any other day except after the first chemo.

Her stepmother came in around 5 PM and we three girls spent two fun hours working on her gingerbread house. (Stepmom—whom I have always adored—also apologized profusely for her husband’s behavior toward me, and said she told him he just needs to grow up.)

I’m going to watch the second film in the Matrix series with Dave and Josh, his son, tonight. Last Friday we watched part one. That’s also the night I threw up, so tonight I’m drinking Gluhwein instead of beer. Just in case.

Tomorrow I fly home. I can’t wait to see my family there, but I really hate leaving. I’ve had small moments of brief panic thinking of leaving her. I know it will be fine. She’ll have grandparents here the whole time. And I’ll be back in two weeks.

Visit Day Thirteen

10 Dec 2006

I arrived a little later Saturday, at 9:45 AM. And left much earlier, of course, to fly home.

She felt miserable the entire time I was there. Her throat really hurt, and nausea slammed her around 11:30. She cried that I was leaving (which I had expected). She said she wanted to quit (which I hadn’t).

She said it’s just too hard. I told her she’ll almost certainly die if she stops chemo and radiation now. She said maybe she’d rather die than continue living like this. I told her that that’s her decision to make, but she should make it when she’s feeling good, not when she’s feeling bad. She nodded at that.

I reminded her that she has periods where she feels terrible and periods where she feels pretty good every day. If she can ride out the bad hours, good ones will follow. Take it one day at a time, I said. An oft-empty platitude turned suddenly meaningful.

Going Home

11 Dec 2006

Despite a nearly two-hour delay getting to Newark, I caught my flight to Amsterdam. I sat next to a charming Rumanian who fled his country for the US in 1989. We talked for hours on language, taxation, Rumanian history, and the charms of Maastricht, where he was headed on business.

With four hours to go, we drifted into our private amusements (he watched a film; I listened to music). Later still I gave in to brief and silent tears while my seatmate gently snored.

I was met by a veritable troupe Sunday morning upon arrival at Schiphol: my husband and children, his parents, and my seven-year-old’s best friend. It’s good to be home.