There is Hope

I started radiation this past week.

I don’t like it.

My family does not like it.

NO ONE likes it.

Oh, it’s “easier” than chemotherapy. I don’t get sick or comatose and my hair is growing in rather than falling out. It doesn’t take hours to get the treatment with hours more of side effects. I don’t have to miss work.

But it’s every week day at 4pm.

It’s non-negotiable. I have to go.

Regardless of what the schedule looks like.

Regardless of who else has appointments.

Regardless of weather.

Regardless of how much work I have.

I have to leave by 3:15pm everyday, get to the radiation oncology center, change into a gown (just from the waist up), lie on a cold “cradle” (which is a dumb name because it implies comfort. This thing is not comfortable…or even soft), have a snorkel thing put in my mouth, have my nose plugged, have my chest out, wear glasses that slide off my face so that I can’t see the screen inside them that helps me know when to take a deep breath and hold.

I have to hold my breath for 20 seconds. Five times. If I don’t mess up.

I have to be exposed to heavy radiation in hopes that it means cancer won’t re-develop in those areas (my lymph nodes and left breast).

It only takes 20 minutes in and out the door. I shouldn’t complain. It’s “easy” and “quick.”

But I hate it.

It means I get less time at work to work. Less time at home to get dinner ready, homework started for the boys, or just stop at the store for a quick something less I want dinner to take over homework time…which then takes over bath time…which then takes over bedtime.

It’s an inconvenience only.

But I hate it like I hated chemotherapy because it sucks and who knows if it will work? Who knows if I will stay cancer-free?

I hate it because it makes everyone crabby because nothing is “normal.”  Everyone’s schedules are thrown off because of a 20-minute appointment I have to go to everyday.

What I’m saying is, this first week was rough.

But I don’t want to end with that. Because this weekend was also the start of Advent, which is one of my most favorite times of the year. With the anticipation of Christmas and the hope for newness, I find myself wanting to believe that it will all be ok. All of it. This cancer crap, the treatment, the stress, the anxiety, the trauma on me and my kids and Cortney, all the garbage we have had to individually work through surrounding a pea-sized tumor that was taken out in May. All of it might actually be Ok.

Saturday I took Eddie Christmas shopping.

He brought up Santa and my heart stopped because, well, he IS in 4th grade. I feel like we are on borrowed time for true belief.

Eddie: Yeah, Liam and I were discussing Santa. We figured he is going to die really soon because how long can that guy live?

Me: Um. You were talking about Santa dying?

Eddie: Yeah, but then Liam brought up the magic. So pretty much that was that. Magic means Santa is immortal.

Me: That seems about right.

Eddie: Last year, on Christmas Eve, when I was in bed…I thought I heard footsteps and I almost went upstairs. But then I wasn’t sure because what if it was Santa? I don’t think you’re supposed to actually SEE Santa. Have you seen Santa?

Me: Not the REAL Santa.

Eddie. Oh, just those guys who dress up like him for little kids to sit on their laps?

Me: Yeah, those Santas.

Eddie: Wouldn’t it be cool if Santa had a blog? Then we could know what he was up to all year…and those elves.

I love the way his mind works.

Later, we were in Target in the Christmas wrapping paper section. He looked over at the stocking display and said, “Mom. Look. A bad word. It says, S – H – I- T over there.”

I looked and realized he was talking about the stockings. They have a display of stocking each with a letter. Someone had arranged them to spell the swear word. I responded, “Someone probably thought they were being funny. That isn’t a very nice word, is it?”

I look back at the wrapping paper, and all of a sudden he is gone. Just when I was about to call for him, he jogs back. “I fixed it. I moved some of the stockings. I didn’t want a little kid to see it.”

I love the way his heart works.

This weekend Alice and I read the Christmas story. She insists Mary had a baby named Olivia. She also insists Joseph is Jesus and he lives in our hearts, not in a barn.

Charlie has a new plan at school and some new routines. He loves them, and we are cautiously optimistic.

Radiation sucks. It’s taking a toll on us because none of us like it.

But there is hope.

There is always hope.

*************

The holidays are a time for giving, and who doesn’t love to give kids the gift of books? If you are one of those people, and you would like to gift a book to my classroom library, please checkout our wish list here. Thank you.

The In Between Time

I’m not doing chemo anymore, but I’ve not started radiation either. I’m in an awkward “in between time” that I maybe should be enjoying more than I am.

This past week, I had my appointment for a radiation simulation to get me ready. I am going to be doing something called deep inspiration breathing hold (DIBH) which basically means that I take a big breath and hold it while I get radiation shot into me. Taking a deep breath will move my heart away from my chest, so when they shoot the radiation into my chest, it won’t affect my heart. It’s sort of a newish thing, and since I am young (LOL), it’s a good option for me because I need my heart to be in tippy top shape and apparently younger folk can hold their breath longer than the older patients.

I had to practice to get to 30 seconds, so I don’t know how great that is.

You can read more about it here, if you’re interested.

During the simulation, I had to wear these glasses that let me see the computer screen the tech was working with. I could see my breathing and when I had to hold it and the countdown to when I could let my breath out and so on.

The breathing thing is sort of like a snorkel that goes in my mouth so my breathing can be recorded by the computer. They also put a clip over my nose so I can’t cheat.

They did a couple scans, made me a “cradle” that I will go in each treatment (so I am in the same position each time), and gave me 3 small dot tattoos so they can line me up with the machine.

I go back on November 26 for my first appointment, although I won’t get radiation until November 27. My first appointment is for “films” so they can take some pictures to make sure the area for radiation is correct and all lined up.

While I wait, I’m supposed to be gaining more strength and recuperating from all the chemo that has been pumped in my body. Resting.

I’m not resting, though. If anything, I am probably trying to cram in way more than I should. It’s the in between, you know. The reprieve from any treatment. I’m trying to finish a grad class toward my PhD (I should be writing a paper right now, but here I am). I’m also heading to the NCTE and ALAN conferences at the end of this week for a long weekend to present four times (two round-tables and two panels). Then there is work. And our personal life. And our kids’ personal lives.

People keep telling me to rest–to let myself “heal.” I honestly don’t know how to do that. There are things to be done. People to care for. Meetings to have. Kids to advocate for. Books to read. Papers to write. Stuff to grade.

Part of me wishes we could just get started already on this radiation thing. I have to have 30 rounds, and right now my “end date” is in January. I just want to be done.

Another part of me is sick of all this cancer treatment stuff and would be happy to push it off indefinitely. I’m sick of appointments and side-effects and the sucking up of my time that could be spent elsewhere.

I have only worked one 5-day week since school started. It’s beginning to frustrate me. And my next 5-day week will be the week I start radiation.

Did I mention a side-effect of radiation is fatigue?

Maybe I did. But a side-effect of chemo is chemo brain and that has not gone away yet.

I know I am lucky. I know I am fortunate. I also know that we have struggles.

Please pray for my energy levels as I fly out to Houston later this week for an intense weekend of professional development. Pray for my Charlie as he continues to navigate some pretty serious issues. Pray for Alice and Eddie to continue their positive attitudes. Pray for Cortney as he is about to solo parent for a long weekend (not that he doesn’t have tons of practice from this summer, but it’s draining).

And then look at this picture of Alice teaching her “Honey Pooh” to play with puzzles.

Thank you for being there for us.

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