Cave In

The tunnel with that light at its end just caved in on us…

Our Oncologist called, the Brain MRI report indicated that Satomi has another 1cm brain tumor and her original tumor shows activity. 

We have an appointment next Tuesday.  She recommended that we get a Neurosurgeon consult immediately.  As a matter of practice, we had already copied the Neurosurgeon on the report and films so I’ll call him in the morning.

Besides this, I don’t know any more specifics.  Satomi took the call on our home landline when I was picking up the girls from school.  I heard about it after the fact. 

Satomi seems to be holding it together-at least until we have more information.  She wants it kept quiet until we have our appointments with the Neurosurgeon and Oncologist.

It’s the smart thing to do.  We all know that the questions will be coming from all sides afterward.  Keeping this from our family and friends (especially over a Holiday weekend) will be painful.  I’m actually writing this post several days after the actual call and backdating it so it is chronologically correct.  I’m usually OK with this form of “lying” since it is for the greater good but it just doesn’t sit well with me this time.

My emotions are all screwed up and my stress is worse than ever.  Satomi is continuing on as normal but remains focused on passing the kidney stones.  This is going to be a long weekend.

Friday 4/2/2010 9:00am UPDATE

We have an appointment with the Neurosurgeon this afternoon.  I spoke with his assistant this morning and she confirmed that our focus should be on more radiation therapy (Cyberknife) and NOT surgery.

I did research online last night and found an article that was pertinent to our situation.  It was upsetting to read so I did not continue to search for corroborating information.  I would normally post the link here but reading it breeds negativity and that’s not what Satomi needs now.  I’ll send it to anyone that asks.

Based on this information, focusing on more Radiation therapy does not surprise me.  It seems to be purely a risk-reward decision.  I’ll confirm these details today. 

We’re both scared but not showing it.

Friday 4/2/2010 12:30pm UPDATE:

The Neurosurgeon contacted the Cyberknife folks down in Newport.  I spoke with them and we have several pre-Cyberknfie procedures already set for Monday morning.  It looks like we’re going to start the radiation treatments as quickly as possible.  It may even interfere with the kidney stone procedures next week.  Things are moving much faster than the first time.

Friday 4/2/2010 5:00pm UPDATE:

We just met with the Neurosurgeon.  He was very positive and downplayed the severity of the tumor.  His confidence and tone seemed to ease Satomi.  Not to say she was upset-just a bit quiet.  She seemed more normal after our meeting. 

Honestly, I found the meeting quite strange.  Of course we never talk mortality rates or survival durations or anything else overly morose.  The bits and pieces of detail he does give falls right in line with the studies I’ve read.  I can’t ask for confirmation of these studies without potentially upsetting Satomi.  

The tumor is about 1cm and is in the left rear cerebellum adjacent to the original tumor.  He confirmed that it is operable but the residual would need Cyberknife anyway so the added risk of a crainiotomy is not justified.  I agree with that.  We’re suppose to start Cyberknife next week.  The Kidney stone operation is also to continue.

My big worry are the chorticosteroids that she will need to take and the radiation damage to surrounding good brain tissue.  Yes, she needs to take those damn drugs again and eventually need to wean off of them again.  I didn’t know what to expect the first time around.  Things are going to be different this time.  Nonetheless, having to do this again upsets me beyond words.

Damage to her cerebellum could effect many different functions-motor control, coordination, timing, attention, language, emotions, equilibrium, posture.  All important stuff.  

Our Satomi has had it so hard.  The idea that it just got worse just breaks my heart.