Wednesday, September 8, 2010

September 8, 2010

We took a trip today to the Ear, Nose and Throat Doctor and he said that Mom looks GREAT.  No damage to anything and he encouraged her to try a little harder to eat some solid foods even if it doesn’t take good. 
I made some chicken and rice and corn tonight and guess who ate?  From a plate?  MOM!!  I’m so proud of her that we took a photo.  Taste is slowly coming back but after a few bites the throat starts to hurt.  She needs to start slow but she’s doing so well.

Mom and Dad celebrated their 49th wedding anniversary on the 6th by purchasing a fish tank.  It looks pretty and I’ve included a photo of that as well. 

On Friday I’m sending them both to get their heads examined!  Hee hee hee  Seriously – they are both getting an MRI.  Dad will have one of the brain at 1:05 p.m.  just to rule out tumors, cysts, clots and silent strokes which could all lead to the same symptoms as dementia.  Mom is having an MRI of her brain at 1:30 p.m. to see if the cancer ran and hid out in the brain.  That’s where cancer likes to go when it starts to get beat up by chemo drugs.  If the cancer is there – then we attack.  If it is not – the decision is up to her as to whether or not to go through prophylactic radiation to the brain.  Why radiate a good brain?  Right now all the studies and research shows that the benefits far outweigh the risks.  But the decision is Mom’s and we have told her she has our full support no matter what she chooses.  I have had the privilege of speaking with several Oncologist’s around the country via email and some on medical blogs.  They all say the same thing:  although it’s a new approach, since it is a rare cancer, the benefits of this procedure are greater than the risks.

So please keep her in your prayers as I know you have been.  She is doing so amazingly well but this decision and next step is very scary.  I’ll try to answer a few questions here on the blog and if you have any you would like me to post here and answer just email them to me please at

What are the potential risks of prophylactic radiation to the brain?
·         Cataracts
·         Hearing loss and possible fluid retention in the ears
·         Slight skin irritation to the head
·         Hair loss which may or may not come back
·         Minor cognitive impairment but not to the extent one would notice in casual conversation
What are the potential risks if we do NOT do this procedure?
·         The cancer can grow and metastasize anywhere in the brain and cause severe cognitive impairment and death
Could she still get brain cancer if the do the procedure?
·         Yes.  There is a chance especially if the cancer is hiding deep inside the brain or near the brain stem (the brain stem is NOT radiated during this procedure)
If she gets this procedure, and gets brain cancer, can they then get the cancer with more radiation or chemo?
·         No.  That’s the hard one.  Our research says (and if you hear otherwise PLEASE tell us) that radiation to the brain can take place once.  Any more than that and cognitive impairment is very likely. 
·         Chemo for brain cancer is tough.  Since most of the chemical won’t get through the blood barrier of the brain, the chemo would have to be administered directly in to the brain via a shunt in the skull.  Did you just shudder a bit?  So did we.  That, again, would be a decision that Mom would have to make.

So the good news again is that the cancer ‘appears’ to have gone away with the first round of chemo and radiation.  The rough news is that just because it doesn’t show up on a PTscan, doesn’t mean it isn’t lurking right around the corner.  That’s why she will get PTscan’s every couple of months for the next 5, yes count them, FIVE years.  Once we get past the 5 year mark with no more cancer – we’re home free. 

I’ve spent countless hours and lots of very late evenings researching our options online.  Nutrition is a HUGE part of this and Mom has a great diet schedule and with only a few minor adjustments here and there her nutrition intake should be able to battle most things.  But we all know that cancer is never pretty, it changes and adapts, and once it is in you, its probably always hiding out just wondering if it is ‘safe’ to come out and start gathering friends and setting up shop.

Mom is doing well.  She has been walking with Dad again like they used to.  She was cooking some breads and rolls this past week and has been active around the house.  It is nice to see her getting back to some sense of normalcy.  However, life is never back to what it was before we got the original diagnosis.  And so Mom’s strength will continue to serve her well as she seeks out new ways to live – new ways to fight – and new ways to stay on top of her game.  GO MOM!

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