Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

Archive for the category “brain seizures”

Whole Brain Radiation & Me

Whole brain radiation sucks ass.

Seriously. I have had all types of radiation. Upper thoracic, skull (not brain), sacrum, right shoulder, liver, left eye orbital, right eye orbital, targeted brain tumors. I probably left some out. The side effects were rough on all of them, but I was able to work around most of them.

WBR was different. In my previous post, I talk about the events that led to the decision for this treatment. The aphasia happened only once after I started rads. It was during an online doctor meeting for Sam, of course. Couldn’t have been better timing. I was lucky that Gabriel was working at home and not in a meeting of his own. I couldn’t stop saying, “musk-les.” I couldn’t pronounce “muscles.” I was able to choke out a “help” to Gabe. Aphasia is sneaky and frightening.

I still get scintillating scotoma. Not as often and not always with a headache. At the moment, this is what has been keeping me from driving. I can’t see through those damned shapes.

WBR wore me out. Mildly at first. I started to look forward to the weekend break to get my stamina up enough to at least do laundry. I had 10 total treatments from May 18 through June 2. By the end, I was a mindless mess, too tired to get out of my chair, help with dishes, or read to my boys.

Radiation treatment will take about two weeks to fully end after the last treatment. Since June 2, I have had awful side effects. I, at least, remembered after the first week to apply liberal amounts of vitamin E to my head. I still have scabbing, but it could have been worse.

And… it did get worse. I had ZERO idea that it could be possible to have the skin around my eyes burn. I knew my eyes might be affected. I was told my vision could change. I have been washing them often, putting in eye drops, and slathering vitamin E on my face (safely). The skin around my eyes is red and has a lot of tiny white peelings. So sexy. To make it even better, my eyes are always weeping and the skin resembles alligator skin.

Then… my right ear popped very audibly and I had fluid and blood come out. Seriously. What. The. Fuck. I won a trip to Urgent Care and a double ear infection.

Probably one of the harder side effects, mentally, wasn’t even from radiation. I had to take a steroid twice a day to help cope with any pain from my brain swelling due to rads. The steroid caused my body to swell up. My abdomen and my face resemble an egg. It wasn’t comfortable and I really didn’t look like myself. I was given a schedule to reduce and get off the steroids. My last dose was June 10. Such a relief.

Steroid Bloat With Alligator Eyes

What these after-effects also led to was less time on social media, not so terrible. If you are trying to contact me via Facebook, I check messenger about every other day or if I think about it. I also contacted fewer friends, not so good. I’ve been reading more, which is nice. I have been more introverted than usual. I have a few friends and family who wrote letters to me before and during my treatment. I need to finish my letters back to them. They were very much appreciated.

The steroid bloating has gone down a lot. I don’t feel nearly so uncomfortable. However, without the steroid to check it, my pain levels have risen. Currently, I am fine with that. I would rather take pain medication every other day or so than to deal with an egg head and body.

My eyes have also cleared up a great deal. I still use eye drops multiple times during the day. I still have scabbing around my head, but it is now more itchy and it is healing.

A more comfortable Libby.

One side-effect that I am getting under control is no sense of being full. I have been eating more than I usually do. This was strange because I was unable to taste anything. In the past, this has caused nausea. I am good with having a little weight to lose.

To my metsters about to go through whole brain radiation, moisturize, moisturize, moisturize. Don’t forget your face. Be sure to keep up on your veggies. If you lose your sense of taste, as I did, balsamic vinegar is helpful on a salad or pretty much any vegetable. It is also good on chicken.

I Like My Brain

My cancer wants to eat my brain. Therefore, cancer is a zombie that I am unable to kill it properly. I can’t even follow all the rules appropriately apart from having a kick-ass partner.

The night of May 8, Gabriel took me to the ER – side note, I have been writing a poem or song about the ER. I felt that was something I need as I spend so much time there. The scintillating scotoma has been going on for a few months. For those of you who are looking this up, my own experiences have normally involved bright objects, sometimes like lightning or lines. Last night involved large rounded shapes.

This is a pretty decent depiction.

Scotoma lights can not be seen through. This makes it very difficult to read, look at all of the things my kids show me everyday, and drive. The lightning lines I can work with. The shapes were impossible. I was glad that I was at home when they really hit. I had been running an errand just before. These always lead to headaches. I was told it led to migraines, but they did not feel like migraines to me.

I have been waking up with headaches for the past few months; different from migraines or sinus types. An ache starting at the base of my neck and heading up over my skull. This has been going on since at least March, but maybe longer. It isn’t a pleasant way to start the day.

I am sure that a lot of people are asking, “Why didn’t your oncologist do anything?” The answer is that he has. Dr. C is really on task and doing his best to keep me earth-side. I had first mentioned the lightening lines probably around October or November of 2019. I also talked to my radiation oncologist about it. Dr. J also suffered from scotoma and told me it was caused by stress. I did have three baby zombies making an appearance at that time.

Betweeen the three of us, we decided to allow my current chemo to do its job. And it did. Those zombies were double-tapped and gone with the next scan.

The scintillating scotoma actually did continue. It didn’t show up very often and I could fade it out by using calming techniques: deep breathing and keeping my eyes closed for a minute or two. With four kids and a rather large house, I think I am allowed some stress. These did settle it down, and quickly.

This method worked really well up until about February, when my headaches started. I probably should have discussed it with my cancer team when they were becoming more frequent and annoying. Maybe even insisting on noggin scans. Admittedly, I did not as I thought it was the anxiety about Covid-19 that was causing the lightning and the headaches. I believe Dr. C was thinking the same thing.

These are weird times.

Back to the ER visit.

Last night, I was not only seeing the bright shapes, I was not able to speak properly. My brain was not allowing me to speak the words that I wanted. What popped out was a jumble of nonsense. I heard it come out and I knew it wasn’t right. It took a lot of work for me to say what I wanted to say.

Adding in a large headache to the above symptoms had my husband on the phone with Dr. C. He had me go straight to the ER.

I had a blood draw and a CT scan. The blood looked okay to the ER doc, apart from low hemoglobin. The scan showed a large number of mets had invaded my head. The doctor recommended full brain radiation and had sent that to Dr. C and my General Practitioner.

He told me that what I had been experiencing was probably less scotoma and more seizures. The tumors were probably causing inflammation and swelling in my brain. This would explain the words and the brighter images that have been affecting me.

I will see my oncologist on Tuesday and I will most likely get an appointment to speak with Dr. J about the radiation. In the meantime, I am taking steroids more often to help with the headaches and a seizure medication to help with the lightning. I will post an update after speaking with them.

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