Dana Farber visit today and the news is great

I met with my doctor at Dana Farber today and things couldn't have gone better.

Blood levels continue to remain at normal levels which is fantastic but what's even better is that the eosinophil levels have gone from a staggering 18 down to 0.

Being on the prednisone really has helped as far as the GVHD, skin constriction problems, and overall pain.

Side effects of it have been puffiness and an increase in irritability but that's to be expected from a steroid.

They have decided to lower my dosage of prednisone with the goal of slowly pulling me off of it but there is a chance the joint pain will come back as they do.

Hopefully a nice balance can be found somewhere on dosages versus pain.

On the up side, I have been cleared so I no longer have to wear a mask and gloves all the time.

They are still necessary for at-risk crowded areas but I that is a judgement thing.

I can also now go to a restaurant and actually sit to eat.

Up till now,  I have been restricted to ordering in so this is a nice treat.

I had hoped they would take me off the neurontin but they don't want to make too many medication changes at the same time.

This will be re-evaluated when I see the doctors again on July 10th.

I am also scheduled to get my next set of immunizations at that time which is very cool.

This was a very good visit.

PT today - ow

I went for my first physical therapy session today.

The therapist, lets call her Olga, seems to have been in an unusually enthusiastic mood today. 

With a smile on her face and an over abundance of zeal, Olga proceeded to turn me into my lower back and legs into pretzels.

Olga flipped into high speed on the calves while be-bopping to the piped techno/dance music.

 Thankfully someone changed the radio station to something more reasonable. :)

People. Katie Perry does not equal quality music. Just say no.:)

The strength exercises were a piece of cake but the stretches were something else entirely.

I had no idea that much movement range had been lost from essentially being under house arrest so long!

For anyone stuck in the hospital and then home for an extended period of time, stretching is clearly a must so get to it. It will help speed recovery and reduce joint pain.

Having this done is a good thing and I'll be doing the practice exercises religiously to get back to range.

GVHD appears to be coming back

Over the last few days, I have been experiencing some GVHD symptoms all over.

My tongue and throat have been raw.

The eyes have been itchy and swollen. They get better over the course of the day but I have been waking up to find them crusted shut.

Now I'm developing irritated skin across the back.

None of this is worth calling the on call doctor for but we will be having a call tomorrow.

Physical Therapy and a few odd bits

Finally heard back from my physical therapy place this morning.  They were able to get authorization from my insurance company so we start later this week. I don't understand why it took so long to turn this around but I guess progress is progress.

On a more immediate note, a new behavior has reared its head over the last few days. I am not sure if this GVHD related or not but I have been waking up with my eyes encrusted. It is almost reminiscent of what you get with pink eye but I don't have that. The eyes are dry but clear.  I sent a message to my nurse practitioner on it so we will see what we see.

I also asked about whether I can stop taking the neurontin. I started it to help with the pain but I am no longer sure it did me any good. The only thing that has kill the pain is the prednisone. Here is to hoping the nurse practitioner or my doctor say yes on stopping. It would mean six less pills for the day which is nothing to sneeze at.