Monday, May 9, 2011

Groundhog Day

I'm one of the only people I know who didn't like the movie Groundhog Day.  (I didn't like the more recent Source Code either).

Even though my life has become much more scheduled in recent years (after kids) and I've even grown to see the benefits of a routine schedule in many ways, it does still bother me to think about doing, or to actually do the exact same thing every day.  I've struggled with this issue over the past seven years with raising Adaline, with her morning routine being almost exactly the same, almost every day. Between 5:50 or 6:20 she wakes with a cry/squawk. We prepare a bottle with pediasure for her to drink with her phenobarbital. Warm it in the microwave 25-27 seconds depending on the microwave strength measure out the medicine and add it in.  We verbally alert her that we are on our way to get her.  Dependent lift, then carry her to our room.  Feed her the bottle.  Kiss her on the sweet dip in the bridge of her nose while she’s finishing the bottle.  She rolls to the right.   If it’s the weekend, now, she will snuggle for a bit and laugh and play.  If it’s a weekday, then we roll her back to her back to change her diaper against her will.  She begins to cry and kick, because she does not want to wake up, or have her diaper changed. Then it’s time for the pants, which she desires even less. It’s a struggle, and she kicks and balls up, but eventually we get her pants on. Then the second lift, up into her wheelchair. Seatbelt On (double check that it fully clicked, since the fall).  She burps. She cover's her face.  "Where's Adaline?" we play this game several times.  Push chair into the bathroom to brush teeth. There used to be fight with this, but now it is mostly fine due to the discovery of the music toothbrush. (Thanks Aunt Erin!) Finish brushing teeth and then give the toothbrush to Adaline to let her brush.  Try to get brush back… she cries if I take it….Leave it.   Wash face.  Move Adaline in her chair to go out to the TV to watch Mickey Mouse or Handy Manny in order to distract her for the completion of her dressing. As her chair moves, she throws the toothbrush to the ground.  It will be picked up to be washed later.  Turn TV on.  Find Disney channel as quickly as possible before she gets upset. Put Lunchbox in backpack.  Time to change her shirt.  Lift her right arm….she gets mad and clenches up, sometimes tries to bite my hand, but really just a love bite.  Attempt to distract her again, and then change her shirt. Put socks on. Put shoes on.  She kicks shoe off. Put shoe back on.  Jacket on if needed. Chest straps on.  Lotion on face.  Brush hair. She then grunts and reaches for the brush. Give brush to Adaline to brush. She watches a minute of TV. Try to take brush back.  She cries. Leave brush.  Kiss Adaline and tell her how beautiful she is.  Bus! Bus!  Open front door.  Begin to move wheelchair….she throws the brush down to the floor.  Push the chair hard over threshold, and hard enough that her footrests on the chair push open the screen door.  Wheel through the yard. Rotate.  Back onto the bus chair lift. Lock brakes.  Wave goodbye!  She’s very happy as she rides up the chair lift onto the bus. Kicking her legs with joy! 

Some of the order can change slightly, a few of the steps have been added since she began to attend school and ride the bus, and we have had a few vacations (Thanks again, Aunt Erin, and Grammy and Dpo and JEN!) but for the most part this is our morning routine.  It occurred to me recently during a walk jog with my friend Cindy that having this day in - day out routine did bother me when I did not get a break from it now and then.  I had begun to think more about it because I was no longer getting my morning breaks on Tuesday for my morning running group, and the occasional Saturday depending on what time I’d run on Saturday. It was very easy for me to get up at 4:30 or 5:00 a.m. to run and break up my routine.   While the constant repetition does begin to wear on me without a break, I also hate to consider the alternatives.  

With all that said, now, here I am in, another Groundhog Day Type Scenario. It's a bit more like the Source Code somehow though. (Source Code is a Sci Fi Flick where a soldier gets ?teleported ? into another man's body to be allowed to re-live the last 8 minutes of that man's life in order to solve a crime.)  Every weekday at 1:30 I drive over to the radiation center and check in.  I sit in the waiting room for a few minutes and play my words with friends, or write some notes.  They call me back.  As I walk back they say “you can go ahead and change, we’ll be right with you”.  I go into the changing room. I take off my clothes from the waist up as instructed.  I open the B-2 Locker and put my things in.  I take off my necklace, reluctantly, and set it in the locker at the front, so I cannot miss it when I come back.  I put my gown on, open to the back.  I walk out toward the radiation room and a tech says “we’ll be a few more minutes; you can have a seat in there”.  I sit and look at some magazine. They call me back.  There is some discussion about how I’ve been feeling, etc.  I sit down on the plinth, then lie down in my mold with my arms over my head and my face to the left.  They put a bolster under my legs and begin to position me just so.  So that it is exactly the same every time.    They leave the room and then the radiation begins.  It is painless other than the discomfort in my right arm due to the severe muscle tightness.  There is a beeping sound that lasts between 30 and 10 seconds a few different times and the machine moves and radiates from a few different angles.  Someone comes in and places a rubber mat on my chest, then they leave and there are a few more beeps.  Then it’s time to get up.  I must use my other arm to lift my right arm, after it’s been stretching that way.  I get up and reverse the whole dressing bit.

One day a week, on Mondays, I get to see the radiation oncologist, for a visit. Although I have seen him each day so far due to a question we had about radiating the existing lymph nodes.  At one of my visits with the surgeon, he told me to not let them radiate the “left over” lymph nodes in my axilla (the ones he did not remove during surgery).  I had asked him to please call the radiation guy himself, but I did tell them he said that.  Due to my making that statement, they held off on the lymph node radiation until today.  Apparently, there are different amounts of radiating of the nodes that can be done.  We are now doing mine, but to the lesser degree.

I am stretching my arm, but it is still very tight. I’m attending my daily radiation treatments, and I’m applying my lotions 2 times per day, and 2-3 times per week as instructed.  I am a drone. However, again, I dislike considering what could happen if I did not continue the course.

Since I’ve been thinking about this “Groundhog Day” phenomena, I’ve been trying to mix it up a bit to see what would happen.  I’ve started playing music for Adaline while changing her diaper….she doesn’t cry or fight.   This morning she even started dancing.  So, I think for fun, I think I will try to take special note of what IS DIFFERENT every day at the radiation visits. I think I’ll go for the A-1 locker tomorrow!

Here is something else that is Different!
That's my new hair!  Wow.  I had no idea my neck was that long.
What's bizarre about this photo is that when i first saw it, i thought it looked exactly like my Dad from behind when he was younger. But with an earring.

This Kid is Just Different


  1. Posted for Lisa C.

    Continue to love reading your blog. You have such gifts Emily, and sharing this unasked for experience the way you are with all of us is one of them - Thank You

  2. Agreed, I love reading about your routines or your lack thereof- adding music, etc.- moving to A1 locker. I say whatever helps, do it and please keep writing - I feel we get to share this unwelcomed journey with you this way. Take care my friend and I am waiting for you to start words with friends with me- remember I am mom tom

  3. Really good to read, Emily. You amaze me with your coping skills, and how you approach each new challenge. Love you. Mom