Yes…there’s a week 7 update (and yes, it’s late) but thankfully it’s not an update on week 7 of treatment. It’s week 1 of healing after 6 wretched weeks of treatment (Woo!) but also the week where there is the highest dose of radiation in my body so we’re not totally out out of the quicksand just yet.
As you can imagine, I crashed and burned last Friday night after my last treatment and all the day’s excitement. And honestly I didn’t move much all weekend. Saturday consisted of lots of Hallmark movies and an afternoon nap and Sunday was about the same but I added roughly 10 minutes of yard work followed by extra nap because those 10 minutes was all it took to wear me out again.
The rest of the week seemed to be a continuation of the existing symptoms. The ulcers on my tongue soon joined forces and created one giant ulcer down the entire side of my tongue and left tonsil, my ear got crustier and juicier, and my skin was still raw, itchy, and slightly scabby. However, the Cuticerin gauze I wrap up with every night like a mummy has magical powers and has jump-started the healing process big time. Still a ways to go, but I looked less and less like a mutant each day last week and that’s a huge win for me feeling like myself again. There were so many times I would forget how gross my skin got until I looked in the mirror was very quickly reminded that I looked like Two-Face. Seriously. (Stay tuned for a post on all the gross things coming soon)
I could go on about all the physical symptoms, but let me just tell you how incredibly thankful I was last week to not spend every single second thinking about when I was going to be treated next and what else treatment was going to do to me physically, emotionally, and spiritually. I have told so many people throughout this that there is absolutely nothing that anyone can do to prepare a patient for the emotional toll that going through something like head and neck radiation (or I guess any kind of radiation) will have on you. I’m not even sure I was able to articulate it well enough here over the course of things, but it was brutal.
There was no physical pain that I experienced that even got close to comparing how many times I wanted to cry simply because of the lack of control I had over what was happening to me, the unknowns I was forced to face every day, or the fact that time seemed to creep by slower and slower the closer we got to the end. I was tired and needed to rest for sure, but so many times I wanted to go to sleep even when I wasn’t actually that tired just to make it all go away for a few hours. And that’s hard to admit. I never felt depressed or wanted to quit, but it took everything in me every single day to get going and keep going until it was time to do it all over again the next day.
But I made it. I made it by nothing but the grace of God and a trillion naps, gallons of water to stay hydrated, and guaifenesin to thin my saliva out. I’m on the other side now, and the view is way better over here. I’m healing from a very long marathon of the last 4 months. And an unexpected 4 months at that. I’m still feeling crispy, crunchy, and tired at times, but I’m slowly getting my groove back and feeling like the Valerie that pranced into UAB hospital July 6th with two thumbs up and a goofy grin.
So what now? Healing, healing, and more healing. Followed by gaining 5+ pounds back, eating all my old favorites once my tastebuds come back, and finally celebrating my birthday since everything still taste kind of wrong for now. I’m going to eat SO much cookie cake.
On a different, more responsible note, I also have big plans for creating some sort of take-home resource for head and neck patients that draws from my experience and also incorporates good clinical practice so that more and more patients have an increased chance at remarkable success through treatment. I get that there are definitely challenges with this since everyone handles things differently, but I’m determined to contribute something from my experience to help future patients power through this beast better, no matter how small my contribution ends up being. I understand everything so much better now and the Road to RadOnc continues to make even more sense as these layers unfold. Add my technical writing and document design experience to the cool things I get to do at work now. Finally. God just continues to be the coolest dude I know.
So for the last weekly post for a while I’ll say it one more time….onward and upward! Here’s to healing up and being good as new very, very soon. And thank you Jesus for giving me this opportunity to share my journey with you all.