I realized it’s been a while since I’ve updated on here- most of my updates have been on facebook and I realize not everyone is on there.
Let’s see- today I finished up 28 rounds of radiation! However I am not totally done with radiation yet- I now have 5 “boosts” which is radiation that is targeted to one smaller and specific area- which for me is my scar line. The scar line is a common place for recurrence and as my radiation oncologist said- it’s also the area with the least amount of blood flow (because of scar tissue) which requires a bit more of a boost (ha, get it?).
I ended up getting a pretty significant radiation burn under my arm…which meant treating the area 4 times a day with a soak followed by an antibiotic cream. My chest area burned also but not anything like under my arm- so treated that area with cortisone cream. They explained that the skin under the arm is thinner and thus is more sensitive to the radiation. They said not everyone burns like I did…it’s just something that happens to some of us. The good news is- that the burn is improving and that my poor underarm is DONE!!!
You might be wondering how radiation works. Your first main appointment- after meeting your radiation oncologist of course, is for the simulation. In this appointment, they get you set up on the table in the exact way that you will be set up for your treatments. For me, this meant laying on my back with my arms up in stirrups over my head. Then they use a CT machine to take images which they use to set up for radiation treatments. Thanks to my long arms, it took them a while to get me set up so that I could fit in the machine! It was actually quite comical. they also took pictures of the set up with a camera and took a picture of my face…which they placed on an ID card that I would use to check-in daily.
During this procedure, you are also typically given tattoos. Yes- these are real tattoos. they are used to line you up on the table. I have heard sometimes other methods are used but most of the time you get a few very small tattoos. I got three.
In all my simulation took an HOUR, which was rough on my arms. When I finally took them down I could barely move them!
I had the simulation done a couple weeks before my official start date. Then the Friday before my official start date- I came in for a practice run. On this day they set you up on the table and take a series of X-rays to ensure you are set up on the table correctly. Oh- and I haven’t mentioned yet that because my radiation is on the left side- near my heart- I was required to do breath holds during each….time the zapped me. Ha. I was most nervous about this but I will tell you I now am a breath holding champion, hahaha!
Anyway- the practice run took maybe 30 minutes.
After that- I started the 7 week journey of daily (except weekends) radiation. Every Monday was weigh in day and usually was X-ray day. On X-ray day I’d get x-rays done in addition to the treatment to make sure I was still positioned correctly.
I’ve been asked if I can feel it. The answer is no- you don’t see or feel anything during the treatments. You literally just lay there- and the techs (mine are AMAZING) talk to you through a speaker and tell you to hold your breath. Then the treatments will begin. When it’s over, they tell me to breathe again.
OH! And there is a little box that is taped to my abdomen- this little gadget monitors my breath hold. If I accidentally breathe- the box feels it and the radiation will immediately get turned off. This is an important safety feature. I am happy to report that I never breathed mid-treatment.
As far as how long it takes…the whole process of changing into the gown (just waist up), walking to the room, telling them my name and birthdate (you have to do this every time!), getting on the table, having them line me up correctly, getting the treatment, and then changing back to my clothes takes about 20 minutes total. The time on the table was about 7-10 minutes and each treatment field (I had 4 each time) took 10-15 seconds. Then the machine would move to the next field, warm up, and do it again. The longest part is waiting for the machine to move to the the different fields and warm up to go.
I saw my doctor at least once a week and saw nurses daily when my burn was bad.
Honestly- the whole process, other than the burn, has been really great. My team is AMAZING! I love seeing them every day and will honestly be sad in a week when I’m done. I have gotten extremely lucky that my medical care though this entire process has been incredible. My radiologist oncologist even called me on the weekend, from his home, early on to make sure I understood and was comfortable with the plan going forward.
In addition to radiation- I had my third of 14 infusions of my microscopic-cancer-killing-juice last week. I am SO THANKFUL that these infusions are going so well and I’m not having side effects! I think part of it is that I drink so.much.water (2-3 liters a day) plus around the infusion days I add gatorade the day before, day of, and day after. During the infusion (15 minutes of a nausea med and 60 minutes of the cancer juice) I pee every 15-20 minutes. HAHA.
I did the math- and if all my infusions go on schedule my last infusion will be MARCH SECOND! Having an end point is AMAZING!
Well I think that is about it. As far as everyone else- the kids been watching way too much TV and playing way too much Minecraft because it’s SUMMER. We’ve also been swimming in our pool and Justin has been using his new BBQ often. I have been working hard the last couple weeks on planning our next school year and getting organized!
In other good news- my labs have been getting slightly better every three weeks. I am no longer anemic!! And my white blood cell count it still low BUT it’s going up- I am hoping it continues to go up and up over the next several weeks. Most everything else, including liver enzymes- are all totally normal! YAY!
Drop me a comment here or on facebook and let me know how YOU are doing! We miss all our friends and family so much. Covid sucks.
Here’s a pic comparison of me at my infusions 3 weeks apart- look at that hair! It’s thickening up and growing so much I now get bedhead 😉
Until next time….