I can't see the line anymore.....

Alex's medical care has always been complicated.  I literally spent the entire morning on the phone with doctors offices, testing facilities and insurance companies.  Finding the right balance between keeping the cancer at bay and keeping him immunosuppressed so he doesn't reject his heart is precarious and we feel the weight of those decisions heavily.  But now we are walking such a thin line, I can't see it anymore. 

We have Alex's history of being off his heart meds for 7 weeks when he first dealt with cancer 18 years ago and never rejecting which gives us some reassurances but we can't let that make us complacent. He's been off chemo meds since January and off his heart meds since November so we're at the 7 week mark now.  His transplant team is understandably concerned but we also have to make sure he's actually in remission before we start to suppress his immune system again.  This week, for the first time in 28 years, Alex had no medication of any kind to take; no heart medicine or antibiotics or diuretics or anti-virals or blood pressure medicine.....he was at a loss.  It is such a part of his normal routine he had to check with me several times to make sure he didn't have anything to take.

Some decisions were made today to try and safeguard him.  He'll have a PET scan on Thursday to check for any signs of cancer anywhere.  I'm particularly concerned about the lump in his neck so this will tell us if it's lymphoma or not.  Then on the 14th, he'll have a repeat bone marrow biopsy at Sierra Vista hospital just to make sure the first one was accurate and complete.  In the meantime, he'll start taking Prednisone (both a mild immunosuppressent  and chemo-type of drug).  He'll start a new immunosuppressent medicine on Tuesday as soon as it's delivered.  It also has some cancer fighting properties but all that could change depending on the results of his PET and biopsy.....it's seldom clear-cut for Alex and it constantly keeps me on my toes.

For those who ask what to pray for the list is long today:
     That his test results would show no cancer
     That he wouldn't have any adverse affects from the bone marrow biopsy (he got horribly sick the   last time he was sedated)
     That we would find the right balance between suppressing his immune system and fighting the cancer
     That he would not suffer any side effects of the new immunosuppressent medicine
     That my hair will stop falling out (if I leave a trail of grey hair where ever I go, I apologize in advance)
     That I won't let the fear win