Monday, June 25, 2012

Doubling Down


I went to the doctor on Friday and guess what, no chemo! No biopsy! Woohoo! 


Instead, the Dr took one look at me and said, well you're definitely worse than
3 weeks ago, so we have 3 options:
1. Chemo - which I don't want you to go back on ever, if we can avoid it
(I'd have to be on it for at least a year w/no definitive end point)

2. Continue on your Stelara (my current immuno-suppressor) and
see if it goes back into remission
OR

3. Stelara coupled w/Neoral which is ANOTHER immmuno-suppressor
and that means we'll be doubling down on your immune system.
Neoral is used for transplant patients to prevent organ rejection and 
is a super immuno-suppressive. this form of treatment also boarders 
on experimental because it's rarely used. 

Normally they don't use 2 immuno-suppressive drugs together (especially these two)
because it's extremely dangerous and can be life threatening. And he'll have to watch
me like a hawk. I have to go in for blood work every two weeks because it causes severe
 damage to the liver/kidneys and raises blood pressure.And believe it or not I have normal
 to low blood pressure....no ginger rage lurking in there! Being on both drugs is rare and means I'll have no immune system to speak of for some time. I will have to be really careful around anyone sick. 
SO, we decided to go w/option 3 because the benefits outweigh the risks at this point. Little did I know this drug is super hard to find. I spent forever trying to find it and dealing with some wildly inept people at the 3 different pharmacies. That DID raise my blood pressure and I think I may have been turning colors by the time I left. 
Also, no biopsy, since he took one look at me and knew it couldn't be anything else. 
And he skipped the EKG too, he just listened to my heart for a few minutes and said 
we'll postpone it for a few weeks until the drugs kick in. He actually said, your heart
 sounds happy, maybe the fluttering was caused by something exciting? hahahah! oh Dr.!!
I am very happy that he had an alternative for me and didnt make me go through anymore tests.
 He drew many vials of blood though..which i think he might be drinking it. 

I'm a little scared of the "doubling down" but I'd rather do this in the short term than have
 poison in my body for the long term. I'll just have to be careful and carry hand sanitizer
 everywhere. It's going to make me really tired and nauseated but it should taper off at
 some point. 

Dr.said something funny at the end...he said,I believe in fairness in life and I know this is
 hard right now, but you're going to get through this and only good things are going to
 happen for you after that, a lot of good things, like winning the lottery. Good things
are coming your way, I can feel it. You're my one percenter (rare case) but that also
 means your good fortune is going to be just as rare and incredible.

Talk about uncanny! I love my doctor, he's such a good guy and he really cares
about his patients.

It's even more important than ever for me to stick to my workouts so I can keep
my strength up. I'm still doing at least an hour a day, but I'm going to join the
 gym again w/desiree and workout twice a day. 

I had a really long discussion in the car too, and I've decided not to worry myself
with doubt and anxiety anymore and just have faith that things will get better.
Dr. L is right, there is fairness out there and good things are definitely coming my way.
I believe it and I feel it. Life is good. 

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