Wednesday, March 6, 2013

Two steps forward and a step backwards.

My, what a difference a day makes.  Yesterday I was rejoicing in having an answer.  Today? I don't really have an exact "answer".  My peace in finally knowing has slipped away.  But, I am moving forward with treatment based on my symptoms, two elevated blood tests, several chest x-rays and the discovery of "granulomas" in my lung biopsy.  I do not have major symptoms of this condition.  My kidneys and liver are still functioning like they are supposed to.  I, however, feel like crapola and don't want to take the chance that this fast-moving disease is going to decide to stretch it's legs and take over my body. 

Is there a slight chance I don't have Wegener's/GPA?  Yep.  My biopsied tissue is currently sitting in a holding pattern at Stanford University. The Rheumatologist I saw today, the original Dr. Z, says it can take Stanford upwards of a month to get back to us. 

A month. That's the majority of my raditation time.  Well ... actually, I guess the biopsy was at the end of February so at the end of March they should get back to us with a more definitive answer.  A definitive answer that could still mean I don't have this condition.   It could be something else, it could be nothing.  In my own independent research, I have found some other vasculitis conditions associated with granulomas.  A granuloma is tissue damage from inflammation ... so it could be completely benign.  There's just the problem of this never-ending sicky feeling I have to deal with.  That isn't completely benign.

The drugs are heavy.  They have their own load of not-so-pleasant side effects.  One of them is a chemo-therapy drug. It's not something I can just take for the sake of taking.  But, if it makes me feel better for the time being I am ready to charge ahead and do it!  Of course, I can only start with the steroid portion of the drugs due to my scheduled radiation treatment.  If it makes me feel better, I may never have to start the chemo drugs.  If I am doing fantastic, they may not start me.  Which would be a good thing right?  Stanford could also call and say that it's not Wegener's/GPA and then I really wouldn't have to start the chemo and would do an immediate taper off the prednisone. The good thing is ... the combination of drugs are also used to deal with a plasmacytoma so it's a win/win sort of.

It feels like the doctor is truly leaning towards Wegener's/GPA because he wouldn't start me on such crazy medication for no reason.  It's not what doctors do.  In about a month and a half, I'll have to start the chemo drugs if I'm not feeling better and those carry the even bigger side effects.  Hair loss ... the potential loss of my ability to bear my own children ... early menopause ... nausea ... vomiting ... yea not exactly a party right there.  But, again ... if I can return to some semblance of my normal life, I am willing to do just about anything.

The depression is really starting to kick in.  It's not helping how I feel.  I feel like it's exacerbating things.  I'm not who I used to be.  I've put on weight because I just want to enjoy SOMETHING and food is just SO damn good.  So, I'm gaining weight on an already fat frame, I'm missing my workouts, I'm missing my friends, I'm missing how much I worked, I am missing doing fun things with my husband, I am missing being me.  I am missing having all the goals I had.  I feel like I can't plan ANYTHING because I don't know where I'll be or how I will feel when that time comes.  I don't like to sit on my couch, I don't like to lay on my bed, (well, I do ... just not ALL THE FRIGGING TIME).  I feel bad that my puppy wants to go out and run and play but I'm so not feeling good.  I hate this with every fiber of my being. 

Like I said, I'll do ANYTHING to feel better.  I'd shave my head right now if I knew I was going to lose my hair using the Cytoxan.  I'd already come to grips with that when the looming additional cancer diagnosis was still a possibility.  I'd even commissioned my brother to do the shaving.  It's hair.  It grows back.   See?  I'll do anything.  Prednisone may make me gain weight.  So what, I'll lose it.  If I can be me again, I'll put on weight.  I'll just be a plumper me.  I just want this to be behind me.

I start taking the 'roids tomorrow.  I've heard there's an instantaneous improvement.  Bring it on, I say.  Bring it on!

No comments:

Post a Comment