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We met with the Radiation Oncologist this afternoon and reviewed everything. It’s been over a year since we’d seen him so there was a lot to talk about. Satomi does the monologue and I fill in the blanks. It seems to work better than way with her hearing so compromised. Again, she appeared in good spirits.
The whole brain radiation procedure is (15) 5-minute sessions over roughly 3-weeks. Just like the Cyberknife procedure, we have to do high-resolution MRI and CT scans beforehand so the radiation apparatus can be properly aimed. The MRI is scheduled for next Friday with the treatment to start the week following.
The most obvious side effect will be hair loss and skin irritation. Over the course of the treatment, her hair will progressively fall out so we’ll see how it goes. We aren’t planning to shave it like during Chemo.
He downplayed the other potential side effects of memory loss, reduced cognitive functions, personality variations and possible dementia. He said that it was possible but his experience is that it was typically mild and a gradual process over several months. While I take some comfort in his experience, the remote chance still concerns me. It just seems that so much of this journey has been on the road less traveled so why should this be any different?
He did not expect Satomi’s hearing to return. The tumor has damaged her “8th Cranial Nerve” which controls her vestibular system (hearing, balance, etc.). Luckily, it hasn’t grown to damage the adjacent “7th Cranial Nerve” which is also called the facial nerve. It controls facial and chin muscles, taste, and saliva glands. Damage would manifest itself as twitching or seizures and could be uncontrollable.
The dizziness will also likely continue so we’ll likely stop her visual therapy sessions altogether.
After the radiation treatment is over, the tumor growth will be monitored with more MRI’s. If effective, we should see signs of inactivity or shrinkage within the next few months. He also explained that future spot tumors could be addressed with further Cyberknife sessions. The whole brain treatment could only be applied once to a healthy brain without serious damage.
Sadly, there is some chance that Satomi will need to take corticosteroids again. Satomi and I predicted this and talked about some dosage guidelines with our Endocrinologist. He said a 4mg dose of Decadron is roughly equal to a 125mg dose of Cortisone which is the maximum a normal body can produce on its own. This is very telling. Last year, Satomi was on about 20mg of Decadron or 5 times a “normal” maximum dose. There is no way to predict if her brain will swell from the radiation treatments but all efforts will be made to minimize the dosage.
The whole brain procedure reminds me of the Electro Magnetic Pulse (EMP) weapon in the hovercraft from The Matrix. It’s a last-ditch weapon that wipes out everything in range including friendly ships. It’s very effective but you only get one shot before the Sentinel spider monsters rip you into pieces.
Thinking and praying for you and your family during this difficult time Satomi.
Love,
Charro, Craig and Sydney
Satomi and Sean, you are in my thoughts and prayers always. I wish I was closer so I can do more to help. If there is anything you need, please do not hesitate to ask! love always, your cuz, Akemi
p.s. my mom and dad are always asking about you and wish you all the best.