Tuesday, July 26, 2011

The Tinkerbell Miracle

Pulling into the house last night, we found a curious object on our doorstep: a toddler-sized purple chair with lavender flowers on the seat.

This was no ordinary purple chair. It was a Tinkerbell chair - a twin to the most disputed of all seats in our household, matching down to the last detail, including the missing chair back (well - someone had constructed a replacement seat back out of cardboard and cloth for this one).

Now we had not one Tinkerbell chair but two.

Henry immediately tried it out: a perfect fit, like that plastic and metal seat was made for his behind. Naomi's face relaxed into a smile. She no longer would have to share her favorite chair.

Even better: There were no fights this morning over who got to sit in the Tinkerbell chair.

When we found this magical seat, there was no tag or note attached. Clearly it came right from Pixie Hollow itself. Thank you to the fairies who brought it here.

Note: (See previous blog entry for any questions about why I'm talking about a Tinkerbell chair).

Friday, July 22, 2011

Rad Girl

July 21

These crises are happening as soon as I awake: Kilian is wailing for a bottle. Naomi is hungry. She wants to know the schedule and if we can make masks again. And Henry has fallen into the toilet. Really. He slipped while trying out his new potty skills. He manages to pull himself out. But there is toilet water on his bottom and the seat. Good morning.

My body feels like it is 100 years old. Everything is stiff and achy. My skin burns from the radiation treatment over half my chest and into my armpit. And I’m sooo tired…. even while sleeping in till 8:15. I’m now at the point in radiation treatment where fatigue has set in.

Naomi asks me something about three times. I don’t remember what. I just know I didn’t use a happy mom voice to answer her. “Are you mad at me?” she asks.

“No. I’m just tired and my body hurts,” I answer. I take Henry to wash him off. Somehow magically Kilian stops crying. When I come out of the bathroom with a naked Henry, I see why. Naomi started feeding him the bottle.

“That’s the best thing that has happened to me this whole morning so far,” I tell her.

But the morning continues to nose dive. Henry is screaming because he wants me to carry his pop-up toy downstairs. I look at my arms. I’m holding the day’s worth of pull-ups, clothes, dishcloths and towels, a bottle and Kilian. I tell him he’ll need to carry it down. He lets me know how upset he is with this decision with his very loud, brain-shaking voice.

It doesn’t get better for Henry. I set out their bowls of cereal and declare no one will sit on the Tinkerbell chair this morning. I don’t want to listen to a fight over that. Steve picked up the Tinkerbell chair at Salvation Army. It is purple and missing the back part of the chair that you lean on. But for some reason it is the most coveted seat among children 5 and under in my house. The chair is the #1 cause of fights at breakfast and lunch. Who gets to sit on it? Who got to sit on it last time? Who knows?

But no one is ever satisfied with the answer. I want to throw the chair out.

When I make my pronouncement about the Tinkerbell chair, Henry decides he’ll sit on this giant bouncy ball. What a great solution Henry. Not.

The problem: I’ve had to save Henry from at least 5 life-threatening choking incidents thus far in his 2-and-a-half years. Sitting on a ball that you bounce on while eating doesn’t seem like a good idea for Henry’s track record of choking. This is another very unpopular decision with Henry.

More brain-shattering screaming. I throw the boy in time-out, repressing the urge to physically hurt him, and throw his ball outside. I’m thinking outside is a better place for the ball so I don’t have to deal with him trying to sit on it again. He sees how angry I was and that makes him scream even louder. He is really sad and mad. Henry can be very intense. But I am still too angry and tired to sit down and calmly coach him out of his funk.

When he calms down, I let him get out of time-out. He wanders outside. A few minutes later, he has brought the ball back in. I throw it back outside and another loud screaming fit ensues. Henry is back in time-out.

Kilian is fussing again. He’s been playing happily, batting and grabbing the toys dangling over him in the pack and play. He’s tired. I pick him up, swaddle him and for a moment get frustrated that he takes seven minutes to fall asleep while being jiggled instead of three minutes. That baby is a complete angel. Seriously, when my other children were infants, I would have kissed the ground if one of them had fallen asleep in seven minutes – just being swaddled.

I try to sneak in getting dressed before I get hit by another request or another fight breaks out. My dressing strategy is to have as little fabric touching my chest and armpit as possible. I gingerly pull a cotton tank top with a shelf bra over my shoulder. It feels like I’m rubbing steel wool across my skin. Still it is not so bad once it is on. I got lucky with this Target purchase.

When my skin really started bugging me about halfway through my 30 daily radiation treatments, I tried to find less irritating bras. But when I noticed that I was leaving a layer of skin in almost every garment I tried on, I just grabbed a few, went to the cash register and crossed my fingers.

I apply these hydrogel sheets to my burns. They supposedly provide a moist environment to aide my skin in recovering. They feel like someone bottled heaven and squirted it onto a slightly adhesive pad. I put two on today instead of one - for twice the heavenly feeling. I make a mental note to ask the nurses for more of these at radiation today.

I go downstairs. Naomi again wants to know what the schedule is for the day, if we can make masks. We made these masks at their Super Hero Birthday party and still have several. We decorated a couple more masks a few days ago. But it is now about one-half hour before I’m supposed to have them at someone’s house so I can go to my radiation appointment. I still need to pack a bag for them and get them dressed. I tell her after taking them to Jesse’s house, I’ll inflate the mini-pool in our backyard for them to play in. “That’s it?” she says. She is not impressed with this schedule. It is too short. “That is all we’re going to do?”

These kids are sadly in need of a schedule, discipline, less television and some personal attention. But I’m in no shape to provide it. I feel very unqualified to be a mom this morning. They need someone else right now.

At 11:15 I’m pulling out of my garage with the kids to take them to Jesse’s house. I’m supposed to be putting on my gown for radiation right now in another part of town.

Steve, the creator of nicknames, calls me rad girl sometimes … since I’m going through radiation. But I don’t feel so rad this morning.

So after radiation, I stop home to rest for a few minutes before picking the kids up. Then I write this blog entry. It somehow makes me laugh at whole morning.

Beam Me Up, Scotty

A torso profile, a tomahawk, a bullhorn, a photographic histogram, a larger torso profile - these are the shapes of my radiation. They are made by a ten-foot-tall machine called Trilogy. The radiation comes out of an appendage that looks like Trilogy’s head. She forms the shapes by shifting small lead plates in her face. Photons shoot out of every part of her face not covered by the lead plates.

While I’m getting treated, I’m looking right at Trilogy’s face, watching the invisible radiation hit my chest. Trilogy is just inches away. I should be thinking about the beams killing off any cancer cells that might have been left behind. The treatment is supposed to ruin cell DNA so they can’t replicate.

But I’m usually wondering if my skin is going to hold up until treatment is over. I have just 8 treatments left but my skin is raw and red like a fire hydrant from my breast to my armpit where the beams hit me.

A red warning light flashes on the wall in front of me while Trilogy delivers the radiation. The light means “Danger. Get lost.” And the lab workers do.

No one else is around. The technicians exit the concrete lined room and shut the five-inch thick vault door before they turn Trilogy on. They all wear radiation meters to make sure they’re avoiding exposure.

After a couple minutes, Trilogy rotates her head around and underneath me. As she passes over my head, she makes different shapes with her plates. I can’t tell if she’s showing off, stretching or what.

Jamie, a lab technician, walks in, shifts the board I’m laying on and exits the room, closing the vault door again.

“This is treatment,” she says through the speaker and camera system. Trilogy emits a low hum. The flashing wall light turns on again.

You’re not supposed to feel anything during radiation. But sometimes I can feel my body slightly warm and stiffen while I’m on the table.

I lay very still. My body is covered with orange positive and negative signs to help the technicians line it up so just the right parts get radiated. My arms are held in place over my head by a mold formed just for me.

The doctor told me the radiation would likely scar about 10 to 15 percent of my right lung and could make my rib cage more prone to fractures if I were in a car accident in the future. There is a very small chance it could cause another cancer in that region. But the treatment also significantly reduces my chances of a reccurence.

The whole thing reminds me of a scene from Star Trek II where Spock enters a room to fix an engine part that is spewing radiation. He later dies from the exposure but manages to save the ship and everyone on it. I’m not sure why I always think of this scene. I suppose it is because I’m in this room where no one wants to be. But I enter it in hopes of a better outcome.