«

»

– Who’s driving the bus?

The good news is that the new mass in my brain is probably scar tissue and not a metastasis.

The bad news is that I almost had unnecessary radiosurgery to my brain.

The important lesson is that one must play a diligent and active role in one’s own healing path. My latest brain MRI revealed a new mass in my cerebellum (brain) and Stereotactic RadioSurgery (SRS) was recommended. To recap: 9 brain tumors in October 2012… 4 disappeared with naturopathic treatments, had SRS on the remaining five and I’ve been NED (no evidence of disease) for 2 ½ years. I have a healthy respect for SRS but also believe that you don’t want to radiate your brain if you don’t have to. Plus, I worked hard to achieve NED and I wasn’t going to let them strip me of my title so easily.

My medical oncologist had sent the images to my radiation oncologist and he said he could “zap” it but I needed to see it to believe it. The report said the mass was visible in Series 2, Image 52 and we pulled it up and saw… nothing. The report was obviously labeled wrong. I took the disk home, went through all the series and found the mass… in Series 9, not 2. Then I pulled up my MRI from March 2014, right before the SRS and, sure enough, there was a mass in exactly the same place in my right cerebellum. Which means that there was a good chance the new mass was scar tissue from the SRS from two years ago. My oncologist said it was unlikely that scar tissue would form that much later. But I posted about it and someone told me her brain formed scar tissue 12 years after radiosurgery. I felt sure my new mass was scar tissue.

So I made an appointment with my radiation oncologist and we compared the two scans side by side. We measured and came to the conclusion that it is most likely scar tissue. He hugged me and thanked me for persevering, looking at the scans, finding the mass that had been mislabeled and going back and comparing it to the previous scan and bringing it to him. Because he had been all prepared to do radiosurgery. I don’t hold him responsible. He’s the smartest of the smart and very good at his job. But, the reality is that he has thousands of patients, my file is several inches thick, and I’ve had 15 brain MRIs taken in 6 different facilities in four different states. Frankly, no one would know which MRI to compare it to but me.

My friend who accompanied me for moral support asked me, “What would have happened to someone who wasn’t as big of a nerd as you?” Hahahaa. But it’s not really funny. They would have had possibly unnecessary radiosurgery that can cause later cancer to the brain.

This isn’t a story about how groovy I am… the moral of this story is that no one will care more about your survival than you. And no matter how wonderful the healers on your team are… you’ve got to be driving the bus. Examine your scans and reports. Ask questions. Your higher healing self subconsciously knows the path you must take, better than anyone else. Gather as much info as you can, meditate, ask your body for answers, listen to the responses, and follow your intuition. Bless you all on the path you choose. I believe in you.

 

 

Comments

comments

3 comments

  1. Norma Rogers

    I continue to learn something new from you every day. Good news on your brain masses. Do you need any special software to read your MRI scans?

    1. Kaiulani Facciani

      When you request your scan on DVD, it should come with and automatic player. They are usually PC-compatible only (not Mac). I believe you should always get copies of scans and reports so that if you see a new doctor, you have them with you.

  2. Eileen myers

    I am so so happy for you

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>