Tuesday, October 14: HVGD Rash and Pain

Dang!  The rash has not responded to increased steroids.  The left arm numbness and pain have materialized to my right arm, along with an annoying shoulder/neck pain and a significant loss of strength.  It's weird.  Simply laying on my back to sleep leads to arm/shoulder pain and there's no way to sleep on side or tummy.  As a result, I slept in 50 minute intervals last night and woke up exhausted.  I'm not sure if this is caused by high dose of steroids or HVGD issue.  I'm supposed to get some blood light treatments, which have proven successful in managing the HVGD rash.  I hope it works and that my doc will be able to back off the steroids.  Doc doubled up dose of Gabapenten.  If this doesn't make things better in a few days, I'll get an MRI.  

Now that I'm finished complaining, I got to admit I'm still doing pretty well.  I'm 100% donor cells and my lab numbers look good.  They keep taking x-rays of my chest, but there's no pheunomia.  Some rejection issues indicate my new donor cells are attacking the leukemia and will reduce the odds of it coming back.  I'm experiencing some annoying symptoms, but can take a lot of abuse.  I think this is all just part of show and I just keep ticking off days till the Day-100 bone marrow biopsy.  Hopefully, it will show no leukemia present and I will be on course for a cure from two 'incurable' diseases.

Isaiah 40:29-31 "He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in The Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint,"