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.

Chemo Round 16

I did it. I finished chemotherapy this week.

Friends, 20 weeks ago this day seemed like it would never come. October 24 seemed like it may as well be years away. Especially after I had that first treatment in June. I remember feeling like there was absolutely no way I could possibly do this for 20 weeks. No way. But here I am. DONE!

This is my fabulous nurse, Aimee. I am 100% certain, I could not have shown up to each treatment without her there. She is sassy and deals out just the right amount of grief to me to keep me on my toes and laughing. Plus she is good at her job. Like really good at her job. She puts up with my dang port clogging (yes, even on the last day). I’m going to miss her the most, but really, the entire staff at the infusion center is wonderful. The minute I walk in each week, everyone knows me and is awesome.

I was actually kind of emotional about being done, to be honest. I love that staff. I do not love chemotherapy, but I am telling you if you have to go through something shitty, they are the people to do it with. Kali, Ashley, Mary, and Aimee, I will miss you all the most. But really high fives to all of you who laughed at my stupid jokes and put up with my loud voice.

I don’t know if everyone gets one of these, or if I get one because I am a teacher, or what, but man…this was a fun way to walk out of there. With my “certificate” of completion.

Honestly, I never want to be back there as a patient, but I would gladly go back just to say hello and bring those hard working nurses and staff treats. They deserve it all.

And of course giant shout outs to this dude. He was there for every single treatment. He took every Wednesday morning off work to drive me, carry my “chemo bag” (my bag with my blanket and all my other “necessities” for hanging out of hours of poison), and sit with me during my treatments…even if other people came to visit, he stuck around. He always did a Starbucks run, getting me a latte and lemon loaf, and sometimes getting the nurses or my mom or my visitor of the week coffee.

He said in the beginning this was a team effort and he would be there for everything, and he has kept his word. When chemo depressed me, he listened and told me I was absolutely ok to feel my feelings. He asked what he could do to help. He drove kids around and fed the family when I just couldn’t. He’s a superstar that will refuse to take any credit, but he deserves all of it.

I am through the first two hurdles: surgery and chemotherapy. Up next is radiation: 30 rounds. Every day for about six weeks starting November 20.

I can do this because I have already done so much. But I would be lying if I didn’t say I have some anxiety. It’s a new step, after all. A new treatment with new side effects.

But what I know is this: There are people in my corner who are praying and cheering me on. Cortney will be there–maybe not for each treatment, but he will be there when I get home. He will be there to hold my hand and walk through this next journey.

And radiation doesn’t make my hair fall out, so within the next four weeks we should see some “buds” growing in my bald spots! I am SO ready for hair…and eyebrows…and eye lashes again! Although I have gotten used to not having to shave my pits or my legs so often. Ha!

Here we go…next adventure!

Round 16 of 16 DONE!

Chemo Round 15

That’s the look of someone who only has one more chemo treatment left. WOO!

This week we had to reduce my dose. I had been having some numbness in my toes over the weekend, and because no one wants nephropathy to set in, my doc decided it wasn’t worth the risk blasting me with a full dose and possibly losing all feeling in my toes for the rest of my life. So that was the only change to anything this week. If my toes are still having numbness next week, we may decide not to do the final dose. But if they are feeling better we will probably do the final does as a reduced one and be done!

I did meet with my radiologist this week too. Got the low down on all the possible fun side effects of that. I also got my “simulation” appointment set for the first week of November to get me all set up for when treatment starts on November 20. Then I will be getting radiation 5 days a week for 6 weeks. Thirty treatments in all. That puts me finishing during winter break around the first of the year.

After that I have a meeting at the oncologist again to talk about the future and check ups. I’ll also probably be put on Tamoxifen, and estrogen blocker, at that time.  Since my breast cancer was positive for estrogen, that is what fed it, so blocking estrogen would be the next thing in making sure it doesn’t come back. There are a WHOLE bunch of stuff that happen with that, but I am not thinking about that now. Right now I am concentrating on being excited about being done with chemo next week, taking a break before radiation, and then facing radiation for 6 weeks.

If you are into prayer requests this is what I have for you: Please pray that the numbness in my toes goes away and I don’t get permanent nephropathy. Please also pray for Charlie. I don’t want to go into details because he may not want his business spread all over the internet, but he is struggling with some things and could use some prayers. And of course pray for Cortney’s continued strength as my rock, Eddie’s patience with his younger brother (and sister), and Alice’s continued positive attitude in all of this.

Thank you for being my community in all this.

Round 15 of 16 DONE

Chemo Round 14

Good grief, I have crazy eyes in this picture! It’s like I was excited to get out of there or something (I was).

I’m having a harder time with this countdown than I thought I was going to have. I thought I would be SO EXCITED to be close to the end. I mean, chemotherapy sucks. It sucks a lot. It basically steals a whole day from my life each week, not even counting what it stole over the summer. Plus I am starting to feel it a bit in my feet which could mean permanent nerve damage once this is over.

So why am I not more excited?

Well, when you’re getting chemo, cancer can’t grow, so it’s sort of like, “yes everything about this sucks, but at least I know I don’t have cancer right now.” My brain is already starting to loop the possible worst case scenarios about cancer growing once chemo is done.

There is zero reason I should be thinking this way.

They took the cancer out of me in May. The chemo is just an insurance policy. I am starting radiation in a couple weeks. My grandma and my aunt–who also had my type of breast cancer–never had it come back in any form.

There is zero reason I should be worried.

And yet here we are.

Hello, anxiety.

I am positive the insane busy that is going on in our household does not help matters. If I could figure out how to ask for help, I would, but no one can do our jobs for us…if that makes sense. Missing every Wednesday is starting to take a toll on both Cortney’s and my work stress. Our jobs keep going without us there–which is great–but it means more for us to do upon return. I’m trying to give myself grace, but grace doesn’t mean you can just not do certain parts of your job.

Theoretically when chemo is done, I will get Wednesdays back. However because radiation is an every day standing appointment, I might lose after school work time I used to have in place.

I just need it to all be over.

And I need to feel sure–REALLY sure–that I am cancer-free.

Those aren’t too big to ask for, right?

Besides Chemo Round 14 this week, we had weirdly hot weather, so Charlie had soccer practice on Tuesday in 84 degrees and then today his game was in 39 degrees. Michigan is weird.

Today I most certainly did NOT wear flip-flops and shorts. I wore all the layers and a hat with a giant puff ball on top. Charlie’s team did a great job and I know he loved playing this season which is all we could ask for!

Eddie was met with some reality with two big tests this week. Fourth grade is a bit stressful, but I think Eddie is dealing with it better than his mom is. Don’t tell him I freak out for him. He thinks I’m all cucumber cool about it. Even though I get nervous about things, he is thriving. He made his reading goal and was able to attend the reading pizza party this week, AND he met the class goals of having his homework done on time, so he got to attend the after school reward party too.  So even though there is more responsibility this year, he is getting some bigger rewards as well.

And Miss Alice was treated to a Princess Lunch with her Granny last week Sunday.

Cortney’s mom, aka Granny, found out about an event with a bunch of Disney princesses and lunch and all the fun, so she invited Alice. I am pretty sure Sunday was the highlight of Alice’s short life so far. She dressed up like Elsa and went with her Granny to meet princesses, eat lunch, get autographs, and even dance. So much fun! Such great memories!

So even though I continue to journey through this treatment, the family is doing pretty well. We have a few hiccups and bumps, but a few of us are in therapy to get some strategies for dealing with those.

As usual, thank you for the cards, thoughts, and shout-outs this week. We feel those prayers even if you feel like it’s the least you can do. They surround us and sustain us, so thank you.

Tuesday I meet with the radiologist.

Cortney has already been planning party hats for the last chemo treatment, by the way.

14/16 Done

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