Friday, Oct 24- Cancer Hiding in nerve?

I waited Thursday for neurology to perform the EMG test, but they were swamped and postpone it till today.  It's a diagnostic procedure to assess the health of muscles and nerves cells of control them.  During a needle EMG, a needle electrode inserted directly into muscle records electrical activity of that muscle.  EMG is done to find the cause of weakness, paralysis or muscle twitching.  The neurologist and then perform a nerve biopsy, which is the removal of a small price of nerve for examinoation.

I just had the EMG test on all four limbs.  The results are pending, but it is apparent that different nerves are being picked off randomly, which doesn't make a lot of systematic sense.  The big question is what's causing my symptoms?  To be honest, it sounds threatening.  One guess is that it's HVGD.  My liver, GI tract, and skin are all doing well, but a rejection could be expressing itself differently.  My odd symptoms could also be caused by lymphoma tumor cells hiding in a nerve.  This is now a leading candidate and is bad news.  It would mean the cancer is back.  As usual, my case is considered very rare.  It could be something else.  Next step is to do a nerve biopsy, based on the latest shoulder MRI, which showed an inflamed nerve.  However, it's Friday and they don't do them over the weekend, so they are trying to get it done this afternoon.  I just got to sit tight and wait for Neurology to finish its work and communicate with Dr Anderson, the chief oncologist on call.

It appears I have some new blog followers: the UT Southwestern Neurology Dept.  Since I tend to whine a lot in my blog about ailments, it's proven a good historical record.  One of the med students commented yesterday that they spend so much time with clinical analysis, they sometimes forget what patients are going through. She appreciated the transparency of  my emotions.  A second said I had a great attitude and that it was a pleasure to treat me.  The chief of the department, Dr Williams, then winked and parroted back my prediction that they would scratch their heads and marvel how rare my condition was.  Well, so far we have more questions tho answers.

So where am I?  When I was admitted on May 28, I was within 24 hours of dying.  My transformation from lymphoma to an aggressive leukemia certainly looked like a terminal condition.  Then, suddenly, everything went right.  The chemo took the leukemia to zero, a perfect bone marrow donor was found, the transplant engrafted successfully, and the docs were able to manage my Host vs. Graft Disease (HVGD) symptoms. I ended up back in the hospital because of uncontrolled neuropathy.  This paralysis, tingling and uncontrolled pain indicated that the leukemia had returned.  However, to everyone's surprise, the MRI, lumbar puncture (spinal tap) and bone marrow biopsy confirmed no cancer.  I'm experiencing some real problems with paralysis and pain, and the cancer may have found a place to hide in a nerve. Am I still on the path to a cure?  Good question.

What do I want?  Well, I want it all. Mostly, I want to stay cancer free and live 10+ years.  Frankly, I'm getting used to the idea of being a faith-based Christian who just beat two 'incurable' cancers.  I like being vulnerable and trusting God.  I used to want to run the Boston Marathon, finish 100-mile runs, or ride my bicycle from ocean to ocean.  Now, I want to be that guy.  You know, the one who was healed of two 'incurable' diseases.  This seems like an goal, but I want to finish telling my story.