It took a bunch of phone calls and a bit of persuasion but we have the Radiation Oncologist Consult set for this afternoon and the PET-CT scan set for tomorrow. We’ll have all the information necessary to plan out Satomi’s treatment before our Oncologist appointment on Monday. I was really concerned that the testing wouldn’t be done in time.
I’ll post again after the Consult.
I just got off the phone with our Oncologist. She was quite upset by the MRI report. The cancer has obviously grown. It’s entered both inner ears so the deafness and dizziness are explained.
She deferred to our Neurosurgeon opinion but she didn’t think the new tumors to be operable. They are intertwined with many vital areas of the brain so the risks are too high. The growth is extensive enough not to warrant further Cyberknife treatments. She recommended whole brain radiation as soon as possible. She didn’t expect Satomi’s hearing to return.
When we first chose Cyberknife over whole brain treatments, the choice was clear: the Cyberknife technology allowed up to 3 or 4 treatments before a whole brain session would be our only option [Radiation Oncologist post April 28th, 2009]. We only had 2 sessions of Cyberknife so I thought we had more time.
The Oncologist ordered an immediate PET-CT scan to see if the cancer has spread anywhere else in Satomi’s body. The results of this scan will determine if any other treatments are necessary in parallel with the whole brain radiation.
Somehow Satomi heard me talking to the Oncologist. I filled her in over dinner. She took the news very positively and seemed not to be surprised. I had a hard time not getting upset.
“…extension of metastatic disease into the bilateral internal auditory canals…extra-axial metastatic disease in the posterior fossa…FLAIR hyperintesity within the basal cisterns, right sylvian fissure, and ependymal surface of the lateral ventricles, most likely representing progression of metastatic disease in these areas…”
The doctors are working on a treatment plan. Not sure what else to say.
Hello everyone,
It’s been months since I’ve posted to this blog and I think it’s way overdue. I apologize for the delay but I did have reasons. I’m sure that some of you won’t agree with them-just know that I don’t agee with them either. We’re doing the best we can.
The truth is that her new symptoms have me worried sick. There were several sleepless nights that I had attributed to work or diet or whatever but that’s been a lie. In Satomi’s post yesterday she revealed her new hearing problem and worsening dizziness. The post is an accurate reflection of how Satomi is dealing with it-She remains optimistic and hoping for the best and she plays down just how bad things are.
Please know that I’m really trying to gauge my words. She still looks drastically improved and anyone that saw her would think I’m full of crap. That’s just not my reality.
This problem has been going on for weeks now. Early on we thought she had some sort of upper respiratory infection. Kandice, Jillian, and I all had signs of it so at the time it wasn’t a serious concern. Satomi then had her reconstruction surgery. None of the Doctors seemed concerned because she had no fever. The recovery itself actually went very well but her hearing and dizziness just stayed bad and arguably, got worse.
Her dizziness is almost debilitating. Some of you may remember her first bout of dizziness following her Cyberknife procedure over a year ago. It was so bad she was forced to take Decadron. She described the severity to me as almost as bad as that. It’s so bad she’s stopped walking Kandice to school.
She went to see her Neurologist and Otolaryngologist (Ear, Nose, & Throat Doctor) at the House Ear Clinic and he “saw no signs of drainage” (a sign of an infection) and had no obvious explanation for her new deafness. Both agreed that the MRI is the next step.
If I had to guess, her hearing is at less than 25% of normal and it effects her quality of life. She can’t hear the kids call her. She has to use the Closed Caption service on the TV. I can’t call her on the phone to talk about whatever unless I want to yell into the phone. Most of the time I end up hanging up on her because she can’t even hear me say goodbye. I can’t get her attention when she’s 6 feet away or sitting next to me in the car. And there are so many things left to talk about.
We expect a call about the MRI results any time now.
11/19/10 Update-No call yet. I called the Neurologist office and the Oncologist but neither has seen the report of the films yet. They are calling the lab to follow up. Since the MRI was on Wednesday afternoon, they expect not to have word until Monday. The Oncologist assures me that the few extra days won’t impact a treatment plan assuming for a moment that one will be needed. Maybe it’s better not to know. That’s crap, this weekend is going to suck.
A few weeks ago, I started the ball rolling to finally finish my reconstruction. Last Wednesday, I finally had my procedure and now don’t have that hard tissue expander in my chest! Yay! But, the day after I met with my plastic surgeon for my pre-op instructions, I became partially deaf in my right ear (don’t know why – I’m already semi-deaf in my left ear after getting part of the brain tumor taken out last year) – I can still hear but it feels like I need to pop my ears but they won’t and I have a hard time listening to people talk (in person and by phone) but the funny thing is I can hear background noise better for some reason in both ears! But it seems like the right side is getting worse! I can’t do as many functional things. When I move my head or eyes fast, I get really dizzy and have to stop what I’m doing to get stable. It’s also making me nauseous when I get that dizzy! I got orders to get an MRI of my brain to see if there is any change. I just had it done today and hopefully will have the results soon! I hope it’s not a new tumor but maybe the scar tissue has shifted or something. Keep your fingers crossed! If I stay like this, I won’t be able to do anything! I hope it just gets better as quick as it came up!
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Satomi's Cancer Blog 