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It’s been a while since I’ve posted an update and decided that it is probably time to share even though I feel like there isn’t a whole lot to say.

Since my last update, I’ve started radiation. I drive up to the Thomas Center at Bethesda North Hospital every weekday for these treatments. It is about a 30 minute drive one direction. In theory, I only need to be at the hospital for about 15 minutes; however, I often find I am there for much longer due to things running behind schedule or treatment taking extra long.

Long treatments happen from time to time because positioning and correct breathing can be hard to achieve. Radiation is an extremely exact practice and my position must be within 5 millimeters of where it was when they took the scans or the machine will not send the treatment beams. The nurses did make a cast pillow to help lay my body and arms in the same position each day but that only can account for so much. I will say that the techs are amazing and gentle as they have to move me around to get me where I need to be. Some days I can manage to get there on my own and others take several minutes of rolling, sliding, pulling and shifting to get me within acceptable bounds. Some of our struggle is due to the fact that I have a much greater range of motion now than I did when they made the cast, which is a incredible but also causes a bit of a struggle point.

As if getting my body into the right position wasn’t struggle enough, I also have to hold my breath at the exact capacity I did during the scan for each treatment beam. The longest breath hold I have to do is about 30 seconds and I think that I have a total of about 12 breath holds for each treatment day. If I’m off in the slightest, the technicians instruct me to breathe deeper or let out a bit of air. We have to be so careful with my air intake because by inflating my lungs moves my heart out of the way of most of the radiation thereby keeping it safer and healthier.

At this point, I’m driving myself to these appointments leaving Andy at home working with the boys also at the house. Most days the boys are eating lunch and having recess while I am gone but occasionally they need to complete part of their school day while I am gone. Yes, that is right. I’m the crazy lady who is homeschooling through this journey. After much prayer and discussion, we decided it was still the best choice for our family. And as if starting radiation on August 15th wasn’t enough, we also started school. I figured why not try a whole new routine all at once. So far, it seems to be working for us. Most days the only thing the boys have left when I get back home is science or social studies. We enjoy doing these subjects together and in general they are fun activities so it isn’t too bad to jump back into school at 3 or so after I get home and eat something. Here is our first day of school photo.

My radiation treatment plan was broken up into two separate parts. The first part included a bolus to help get the radiation closer to my skin and treat the area of my scars. This part is known for doing the most damage to the skin since the radiation is more concentrated at the surface during this time. As of now, my skin still looks good and I’m not experiencing many of the possible side effects but my radiologist says that the skin issues will often start popping up in the next week or two. On Thursday, I completed the first half of my treatment plan! It was a big day.

Friday I started the second part of the treatment plan and it was a doozy of a day. Where I am usually on the treatment table for about 10-15 minutes, Friday took over an hour. The scans and my positioning just would not line up. The tech even went to get the dosimetrist and the physicist to make some adjustments to the table and machine to help. After nearly 30 minutes, they decided to have me take a break to go see my doctor since it was time for my weekly visit with her. While I was in with her, we decided to give it another go. Things still weren’t lining up and they ended up having to get my radiologist to do some imaging with higher accuracy and adjust the table using that to get everything right. It was a VERY difficult day on my arm, which was above my head for nearly thirty minutes in the first session and nearly forty minutes for the second – and for my emotions. I cannot explain how helpless and alone you feel laying on the table alone in the room not knowing what is going on as everyone else behind a window tries to adjust things and get it set just so. Thankfully, they were able to get it and we did treat on Friday. As frustrating as it was to have this appointment take a little over two hours, I am incredibly grateful for the team and for the fact that my doctor is so particular and would not treat until it was perfect so she could keep me safe.

Things We are Praising God for . . .

  • My skin looks great at the moment.
  • A doctor who listened to my frustration and questions repeatedly.
  • My doctor’s partner who called me after hours while my doctor was on vacation because he didn’t want me to start treatment with any questions unanswered.
  • The ability to read and learn things that can in theory help during treatments. It is amazing the things doctors don’t tell you.
  • A neighbor who is helping with my range of motion and keeping my muscles, tendons, nerves happy during my treatment course.
  • Good friends who will listen and help.
  • Family who check in and continue to pray.
  • The tons of people who are praying for us.
  • Andy’s ability to work from home.
  • A church, friends and family who are ready to jump in to provide meals and / or help if the fatigue or pain show up.
  • Energy.
  • Techs that are the same most days.
  • Family fun – we’re continuing to go to Florence Y’all’s baseball games, visit with friends, go to museums, etc. All things we thought surely would be out of the question at this point.

Things We’re Currently Lifting Up . . .

  • My skin. Apparently things can continue to get worse even three weeks after treatment is over which means until the middle-ish of October.
  • Rest.
  • My thigh – this is unrelated to radiation but I burnt my thigh badly when our water bath canner somehow pressurized and then exploded this week.
  • Homeschooling. The boys are troopers but it is a lot to do for all of us right now.
  • Protection for my organs. They are doing everything they can but some of my organs are still getting a radiated.
  • Minimal side effects including but not limited to skin that can handle the radiation, no lymphedema and minimal fatigue.
  • Emotional strength – I explained some above and this whole process is so long.
  • Two kiddos who are each the child of some dear friends who have recently been diagnosed with masses in their brains (one is cancer and one is unsure at the point). This news was so emotional but we want to come alongside these families even during our own journey.

I guess I had more to say that I initially thought. I’ll try to update again after a few more radiation treatments. Thank you for continuing to lift us up and be part of our team.