Thursday, February 16, 2012

Treatment 4 of 6 next Tuesday

Woohoo! on the home stretch!  Im actually starting to look beyond this irritating treatment!  My hair is also starting to get super thin, and Im wondering if Im going to be a baldy again after these 2 years of relentlessly growing my hair out. (ARGH)

Looks like Dr. O might want to try some additional CNS prophylaxis after treatment. Probably going to go back on SAHA/Niacinamide because it has shown in mice models to cross the blood brain, blood-retinal barrier and reduce cancer in the brain by 62% in one study I read. 

Of course this is assuming all of my scans, biopsies, etc are in the clear after treatment 6. This will be uncharted territory and I hope this is my last encounter with this stupid disease. Its also up in the air if I will get radiation to my eye after treatment ends also.. I believe Dr. Marr and Dr. O'Connor will have to hook up and decide.

But from a eye stand-point he says I am responding beautifully to treatment directly in my eye with MTX/Rituxan.  Still seeing floaters, but he says it takes a long time for those to eventually clear up because of lack of blood/lymph fluid circulation to the eye. (ironic huh) I may end up having to have a vitrectomy, where they suck out all of the fluid behind the eye and the aftermath of debris.

So I continue to be an enigma, a 1 in a million case, but it keeps the docs interested!  Treatment is starting to make me tired, but its more irritating than anything.

Im nervous for all of the end of treatment scans, biopsies...and what the future holds. But make no mistakes Ill do whatever it takes!  (Putting on superwoman cape)


Monday, February 6, 2012

Update 2/6/12

Hello all!

Im just writing in because I havent updated in a while.  Treatments 1-3 have been pretty uneventful (thankfully).  Today is going to be jam packed because we are flying out today and I still havent received my ARA-C into my spinal area yet. So that will happen when the attending docs clinic hours are over which is after 12. Our flight leaves at 7:15pm tonight so everybody here knows we gotta go! My head is getting sore, which is usually a sign of impending hair loss... which I have lost a little bit, but just enough for me to notice. I know thats the least of my worries, but it feels better not looking the part. Since my dose was increased by 30% Im expecting some more fallout, but hopefully Ill only be the one to be noticing. Otherwise, Im watching the sun rise over the George Washington bridge over the Hudson river. Hopefully the docs will round here shortly and I can get unhooked from this stupid IV pole I trip over constantly.

In other news, I just wanted to ask everyone to say a prayer for a fellow cancer warrior Hillary St Pierre.  She is in the final stages of liver failure and has only days left.. just pray for her peaceful passage to our heavenly father. She is a devoted catholic, and she knows where she is going :) Love her heart, she has done so much to lobby for affordable healthcare for cancer patients. If you'd like to read her blog it is  Check her out. She has some great articles.

But for now, Im going to see if I cant pack a few things up without waking up Chad. :)