Thursday, May 7, 2015

Radiation Wrap-up

There are a handful of items I want to make sure I document to remember my time in radiation. For some reason I had trouble writing in Houston but now that we are back I'd like to catch up on my five weeks of radiation.

Simulation/Prep

To get started, I first had to go to a "simulation" appointment. This was where a form was made around my body so that I would be positioned in same place each treatment. They also drew lines all over my body to line the machines up the same each time. My treatment field was very large due to how much skin involvement I had. They radiated from my jaw down to almost my belly button, from my side/back to just past the center of my chest. Because it was inflammatory breast cancer, they use the maximum radiation dosage possible.

Some of the lines drawn on my chest
The Treatments

Radiation itself wasn't painful. It was pretty quick- maybe 15 minutes under the machine each session. I asked tons of questions. My radiation therapy team was super nice answering all my questions about how stuff worked. In general, what happens is either photons (going deeper into my chest wall) or electrons (more surface level, to attack the skin) are shot out of this big machine into my chest. The machine can form shapes to match up with the area that needs to be targeted for the photons. For the electrons, they use these cut outs of a material called BLT (not as yummy as the sandwich) to form the shape on my chest.



The photons and electrons zap (medical term, haha) the cells they interact causing free radicals to be released and mess with the cell's DNA (as long as they are in the S phase of cell replication, high school biology anyone?). The cells then have trouble repairing themselves, can't replicate, and die. The healthy cells (like my skin) are damaged, but are able to repair themselves, and so it grows back. The hope is that the cancer cells will not. [medical friends- feel free to correct me if I didn't describe that accurately.]

go radiation go!
My appointments were at least six hours apart so generally it was 7am-ish and again at 1pm-ish but it could be as early as 5:30am and as late as 5:30pm. Towards the end of the five weeks I was so exhausted it was a miracle if I actually showed up on time. And I couldn't even blame it on the traffic since the Hope House was only three minutes away!

Side Effects

Skin/Wound

Some of the side of effects from radiation were my skin turning pink, red, melting, and eventually falling off- it was not pleasant. My scar opened up about an inch so I have to work really hard to keep it clean and not let it get infected. It continued to get worse a week and half after radiation had ended but finally it seems to be turning around. ThankyouJesus!!!

Can you tell which side got the radiation??


Hair

My hair had been getting fairly long, but a couple of weeks into radiation it started falling out again. One of the oncology nurses said it couldn't be from the chemo I used to be on (where it was supposed to fall out but then didn't...you know, after I had dyed my hair green...). She said it definitely wasn't radiation because losing your hair isn't a side effect of radiation. She said it must be that I was stressed. I told her I normally knew when I was stressed and that I was super duper chill right now (no kids to take care of, we are trucking along on the cancer treatment plan...). She said it was probably sub-conscious stress.

Well, thinking that all my hair was about to fall out, I went to the very fancy MDAnderson salon where they give bald people hair cuts for free- woohoo! It is a whole other experience to have IV bags in the "spa" with you alongside patients getting their hair shaved off.

IV bags in the salon
I showed the hairdresser what had been happening, and she instantly knew it was from radiation. It was only falling out from one spot in the back. It turns out that radiation field on my neck passed through the back of my head (uuuh, so was that going through my brain??) and did a little laser hair removal on the way out. Turns out that hair will not be coming back- thankyouverymuchcancer!

Didn't know I was getting laser hair removal too- what a deal!
Fatigue

Another big symptom of radiaiton is fatigue/exhaustion- even worse than chemo for some. I heard lots of stories about women that just spent the entire time in bed- only getting up for their treatments. About half-way through I started feeling it. I would come home after my morning treatment and sleep until the afternoon one. Who knew you would need to set an alarm for 12:30pm?

Even now - 10 days after ending treatment - I still have to take a nap to get through the day, sometimes two. Thankfully my mom is just a phone call away and she can come over when I can't hold my eyes open any longer.

[Sorry, no picture of me sleeping!] :-)

Free Time

Not having two kids to look after gave me a lot of free time. I really enjoyed my days in Houston (when I wasn't sleeping).

I tried to go for a walk or do yoga every day. There was a nice park close to the hospital that I took advantage of often.

Going for walks in the park with my sun hat on- I'm sooo cool!
Some days I would meet with other cancer friends visiting the clinic or friends that work at MDA. If I had other doctors appointments in-between sometimes it made sense to just stick around. There is a grand piano in the Mays Breast Clinic (the building I was normally in) and sometimes volunteers come and play music. It was always a treat to listen- so relaxing!

live piano music, diet dr pepper, fro-yo, and a good book- could you ask for anything more??

Speaking of friends- we hung out with friends almost every night in Houston. That part was super awesome- not having to worry about getting kids in bed by a certain time or arranging a babysitter. On nights where we didn't have a social engagement, we went out on dates to Rice Village or out for Mexican food. We tried to take advantage of our time sans kids.

Driving Home

We typically drove from Dallas to Houston late Sunday evenings (after kids were in bed, sometimes getting in at 1 or 2 in the morning) and back home Friday afternoons after my last treatment. I'm thankful we live in driving distance. Flying back and forth would have been too much money so we either wouldn't have gone to MDA or just stayed the whole time. I'm glad we were able to come home each weekend.

Driving to and from Houston each week
The best part was coming home to these two! Being away made me cherish spending time with them sooooo much! Because we would only be home for a short time, I was able to focus on just being with them versus worrying about to-do's that needed to be done. I've tried to apply that mindset now that we are back in town. I know my kids don't care if the dishes are done or the toys are picked up, but they sure do love it when I'm playing blocks on the floor with them! 

SO good to see the boys on the weekends!!!

7 comments:

  1. Thankyou for providing this blog to help educate the readers about this disease. You are so inspiring and document your journey with an amazing attitude and sense of humour. Stay well and I hope you continue your recovery as quickly as possible.
    Mel xx

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  2. Praying for you and your family!

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  3. Visiting your blog after seeing your mention over at Momfessionals. Thank you for sharing your story and raising awareness. Congratulations on completing 5 weeks of radiation!! Praying that your body will continue to heal and God will stay close to you and your family as you continue on this journey.

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  4. I have such faith that you are going to make it through this that I got sincerely upset about the undesirable laser hair removal.

    Healthy vibes and prayers come your way every day.

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  5. I have such faith that you are going to make it through this that I got sincerely upset about the undesirable laser hair removal.

    Healthy vibes and prayers come your way every day.

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  6. Sending healing energy and good vibes for a clean bill of health! - C Cunningham

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  7. I am one of ur Ibc sisters from our support group...found ur blog by accident thru Terry Arnolds post.....Amazing timeline, pics,stories, experiences, ect...This was all written & documented very well...I appriciate that u have choosen 2 share ur journey along with us via web-world....What an INSPIRATION you are....Tnx again 4 sharing....God Bless you and ur beautiful Ranger Family

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