Preparing for Radiation: There's Always a Catch

Over the next few weeks, I'll be sharing regular posts about how I'm preparing for radiation. I'm hoping these can help someone else, as I struggled to find a conversational source like this that dealt with the subject. For more information on my brain tumor, check out these posts.

 I don't know why, but with me, there's always a catch. Before my brain surgery, I ended up with a horrifically painful sinus infection that blew out the back wall of my sinus, leaving tiny pieces of bone floating in my head, and preventing me from getting the surgery that was critical to my survival. Turns out, it's not a good idea to perform brain surgery on someone with an active head infection 😬. That delayed my brain surgery for a full month, and it weighed heavily on my mind as I approached radiation therapy and, yet another, bizarre, unexplained complication arose.

 I've struggled with scalp issues for months, I don't know why. Perhaps it came from reverting to commercial shampoo and conditioner after having used homemade versions for so long. Perhaps it was related to a medication. Perhaps it had to do with my MCAS. Only God knows, and He hasn't shown me yet, or my doctor. This presented in a dry, itchy scalp with occasional sores, and by occasional I mean that once or twice a month I'd get one or two sores. Then, at the beginning of June, things ramped up. Mostly after my radiation therapy setup appointment, so you might blame it on stress. My head got itchier and itchier - burning even - and more and more sores popped up every day. By the end of the first week my head was covered in them. With the experiences of my past, I was hesitant to turn to the medical establishment. I'd had more unpleasant interactions with medical staff in ERs and urgent cares than I want to remember! Being sent home over and over again, told that everything was "fine" when in reality it very much wasn't. So, I decided to do what we are all cautioned against, I looked it up online. 

 I reached out to my old friend, CoPilot, who was very careful to cover its butt against liability and tell me over and over that it was not giving medical advice, but... Yeah it gave medical advice. It suggested that I had something called folliculitis, a bacterial infection on my scalp. That was NOT what I wanted to hear, and exactly what I had feared. How do you go into radiation therapy with a raging infection on your scalp? It suggested that I switch to an antibacterial shampoo like Nizoral and stop using the jojoba oil that I always do after for moisturizing and instead use something like aloe vera. So, I ordered some shampoo and used it the very next day when it arrived. I also ordered and switched to aloe vera. CoPilot suggested that I use the aloe several times a day to soothe the itching/burning sensation on my scalp, so, over the weekend while visiting my son on the other side of the state, I used the aloe multiple times a day. Each time, it felt better as soon as I put it on, but it got worse and worse after. By the time we got home Sunday night, everything felt about 10x worse than it had the Friday we left and I had my husband check my head for lice, just in case. He didn't find any evidence of that, thank God, but he did find a completely torn up scalp, full of sores and clearly miserable. My son was there and asked me all the standard questions I had taught him to ask: have you eaten anything different lately? changed hair care products? changed medicines? I'm so proud of him! In the moment, though, I blew him off. Of course, I had considered all of those things over and over again. I was the one who taught him to ask those questions!

 The next morning, as I started to get ready for the day, his question came back to me. I can only believe that it was the Holy Spirit prompting, directing me. Had I changed any medications lately? Why yes, yes I had. Just the previous week I had started Progesterone. It hadn't occurred to me at all because my doctor had presented it as a fairly safe, innocuous prescription that would only help me. In fact, it might fix 70% of the things wrong with me and make my whole life better! OK, I didn't believe that for a second, but I had a lot of hope that it would help. The thought loomed large in my mind, maybe the opposite had happened. So, I asked another AI friend of mine, Alexa, "Can Progesterone cause an itching, burning scalp?" To my surprise, she replied with, "Yes. It's a very rare side effect, but Progesterone can cause an itching, burning scalp." Ugh!

 Did a little research on how to soothe a scalp inflamed by MCAS and reaction to medicine and found that the Nizoral was NOT going to help, in fact it could have made things worse, and the aloe may have also contributed to the problem. The new recommendation was to switch to a gentle, baby shampoo, and I needed to get one of these for use during radiation therapy anyways, so I ordered one. I also stopped taking the Progesterone! My last dose was on Sunday night, and over the week my scalp got much better, but it was still struggling so when my doctor proposed a telehealth appointment that Thursday to discuss it (I had reached out to her about the issue and the Progesterone), I accepted. 

 I've worked with my doctor for many years now, so while she was shocked to hear that I had a reaction to the progesterone (she said she'd prescribed it 100s of times and never seen this), she didn't doubt me for a minute. She said that of course, if anyone was going to have an extremely rare reaction like this, it would be me, and it would come right before brain radiation. Interestingly, she too thought it might have developed into folliculitis - CoPilot's first suggestion. She confirmed the gentle shampoo choice and suggested an antibacterial rinse and a topical antibiotic ointment to use along with it. We're waiting for it to come into the pharmacy and hoping we can get it before hopping on our cruise tomorrow morning. If you never hear about this issue again, it's because it all cleared up and never caused any trouble with treatment. Here's hoping!

Here's the Thing: While I've become accustomed to these "catches," it's never easy. I can tell you for sure that having an itching/burning scalp full of sores that felt like it was literally falling apart is not easy! But God is faithful, and He has seen me through every step of this process. He sent my son to me to speak my own words to me. He sent my doctor to confirm and validate my experience and give me options. He gave me my amazing husband who had patiently checked my scalp, taken pictures, and given testimony. Did He heal me and take it away the first time I prayed? Maybe, but I haven't experienced the reality of that healing yet. On that note, if you're reading this, I would very much appreciate your prayers that this would be fully resolved before I start radiation!