Five Month Update
Posted: Mon Nov 02, 2009 3:46 pm
Quick recap (this site has exploded, even in the couple of weeks my attention has wandered it has grown exponentially, hence the recap!).
Mel was diagnosed summer 2007, had high dose chemo (Hi-Cy/Revimmune) in May 2008. HiCy paused progression, gave her bowel function back but the rest of the symptoms (fatigue, depression, brain fog, left sided disability) had all returned with a vengeance by March/April of 2009. She had been on rebif and was taking copaxone after the HiCy.
Started reading up on CCSVI when it popped up here, went to see Dr.Dake at Stanford July of this year, 3 stents placed.
Mel continues to do extremely well.
She got a boost of energy when she stopped the blood thinners, all the bruises have gone etc and she's fighting fit.
She is working a full schedule, we've had almost constant house guests for the last few weeks and she's exercising.
No longer sleeps in or falls asleep on the couch of an evening.
I just called her (which is what prompted the post) thinking she'd be home by now but she told me she's 'at the track' - this is the three mile track she used to train on when she used to run races. Granted she's walking/jogging round but even walking 3 miles 5 months ago would have been out of the question.
We're even starting to think (rightly or wrongly) of her MS as past tense - something that happened to her not something that's happening right now. Time will tell all that though but its good to not constantly think of MS.
We're making (vague) plans for the long delayed wedding and are going to go on a ski trip at Christmas. Skiing! How cool is that - I thought I'd never get the chance to do that with Melissa.
I hope everyone else is doing well, we absolutely believe she made the right decision in all of this and I hope everyone's experience going forward bears it out.
Good luck to everyone thinking about this, heading to Cali or Italy or Poland to get evaluated or have the treatment, to those recovering at home after a painful procedure and to everyone suffering with this shitty, shitty disease.
Mel was diagnosed summer 2007, had high dose chemo (Hi-Cy/Revimmune) in May 2008. HiCy paused progression, gave her bowel function back but the rest of the symptoms (fatigue, depression, brain fog, left sided disability) had all returned with a vengeance by March/April of 2009. She had been on rebif and was taking copaxone after the HiCy.
Started reading up on CCSVI when it popped up here, went to see Dr.Dake at Stanford July of this year, 3 stents placed.
Mel continues to do extremely well.
She got a boost of energy when she stopped the blood thinners, all the bruises have gone etc and she's fighting fit.
She is working a full schedule, we've had almost constant house guests for the last few weeks and she's exercising.
No longer sleeps in or falls asleep on the couch of an evening.
I just called her (which is what prompted the post) thinking she'd be home by now but she told me she's 'at the track' - this is the three mile track she used to train on when she used to run races. Granted she's walking/jogging round but even walking 3 miles 5 months ago would have been out of the question.
We're even starting to think (rightly or wrongly) of her MS as past tense - something that happened to her not something that's happening right now. Time will tell all that though but its good to not constantly think of MS.
We're making (vague) plans for the long delayed wedding and are going to go on a ski trip at Christmas. Skiing! How cool is that - I thought I'd never get the chance to do that with Melissa.
I hope everyone else is doing well, we absolutely believe she made the right decision in all of this and I hope everyone's experience going forward bears it out.
Good luck to everyone thinking about this, heading to Cali or Italy or Poland to get evaluated or have the treatment, to those recovering at home after a painful procedure and to everyone suffering with this shitty, shitty disease.
