We are starting to learn more about next steps in treatment. We knew that radiation therapy would likely be next, but we weren’t sure what it would entail. We got some details on Friday and had to make some tough decisions.
We were told that there were two main options in my case: 1) whole brain radiation and 2)targeted radio-surgery to the site of the tumor. Whole brain radiation, as the name suggests, involves radiating the whole brain, so that if there are any stray cancer cells outside of the tumor site, it would treat those too. Unfortunately, there are some major side effects including irreversible cognitive difficulties (short term memory loss, difficulty processing information). With option 2, cognitive difficulties are far less common, and apparently not a major concern. But it only treats the site of the tumor so if there are some stray cancer cells, it won’t get those. It was a hard decision to make, and originally, I was leaning towards whole brain radiation because even though I do not want to suffer from irreversible brain damage, I REALLY don’t ever want to have cancer again. (what a choice to have to make!) But after talking to several doctors about my options, it seemed clear that the tumor I had was very aggressive and it made sense to target it specifically again so it did not come back. Plus, having radio-surgery now does not mean that whole brain radiation is ruled out as a future treatment if necessary (if any new growths appeared in an MRI scan).
Friends, I have done my best to stay positive and strong in the face of insane challenges, and I feel that I’m reaching a sort of threshold. I am close to my limit. The radio-surgery involves a surgeon sticking pins into my skull and attaching a frame of sorts to my head so that I am unable to move at all during the procedure. They do not use general anaesthetic for this procedure, just local, so I will be lucid during the process. That’s it, I’m at my limit. Someone is going to attach pins to my skull while I am awake. I have felt fear this year many times. But I am feeling it in a very intense way about this procedure. I try to keep it at bay, but it has become a real presence in my life, a new four letter word: fear. There is the fear of pain and side effects, but also the fear that even if I am doing my absolute best to fight this disease, it may not be enough. For the last few days, I’ve been easily overcome with emotion, bursting into tears when I think about this past year and the weeks ahead. I am that woman crying into her food at the restaurant, the one crying as she walks down the street. I’m trying to keep it together, but it’s hard. When I feel overcome with emotion, I try to focus on the present and the goodness of the moment: the wind on my face, the taste of delicious food, the warmth of a loving family. I know it is normal to be afraid and to feel sad, and it’s probably good to have a few good cries.
Thank you, friends, for letting this blog be a space where I can be honest about this experience. I believe that fear is normal, and that it can be harnessed. Just writing about it, and getting it out, helps me to feel stronger. With your help, I will turn fear into another four letter word: hope.
Speaking of hope, check out these photos: