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.