Friday, January 27, 2012

**thunk thunk** ...uh is this thing on?

Wow.  Has it really been a year since I've written here?  For all of the drama leading up to and through radiation treatment.  This may have been the toughest year of my life.

The phrase "waiting to exhale" has been the refrain.  Despite having a vague sort of road map to recovery, I thought I would be able to pretty well chart my way through it.  The first two months went very well.  I made immediate gains in physical therapy and the feeling in  my feet came back.  I had quite a bit of pain, but I was prepared mentally to keep pushing.

By mid March I started having issues with increased pressure in my brain.  I started have temporary vision loss and pain in my ears, as I had the summer before.  This seemed to correlate with a slow taper of my hydrocortisone dosage from 50 mg per day to 30 mg.  I raised my dosage again and tried to get relief.  From here until July I struggled with these symptoms along with a return of parasthesias in my right arm and hand.  My pain was constant and I was put on fentanyl patches to cope.

After much consultation with doctors at home and at the Mayo Clinic.  We went to a longer acting steroid, dexamethesone, in an attempt to stabilize the pressure in my head.  The results were immediate and it cleared most of my symptoms.  However, I now had new symptoms due to the dex.  I had terrible insomnia and profuse sweating.  I accepted these for what they were and a neuro-ophthalmic exam showed my optic nerves had reduced some swelling.

I had a follow-up visit at Mayo on Halloween with world renown POEMS expert, Dr. Angela Dispenzieri.  We did a PET scan and the results were good.  However, I did have an unexpected rise in my VEGF levels, which are a primary indicator for POEMS disease activity.  She was very frustrated with my recovery and have no explanation for the continued pain I was experiencing in my legs.  She offered that if we didn't see improvement in 6 months she would have to reassess my diagnosis.  This left me feeling kind of adrift again.  We departed agreeing to not overreact to the blood test results and do it again in 3 months.  She insisted I should get off dexamethesone and also off of the narcotics I was on.  That would chart the next 3 months of my odyssey.

Medication changes require weeks or months do get through.  I was needing to ween off of three medications, anabolic steroids (testosterone injections), long acting corticosteroids (dexamethesone to prednisone to hydrocortisone), and opiate based narcotics (fentanyl and percosest).  My method up to now was to do med changes serially.  That would encompass the next nine months!  I decided to go cold turkey.

My holiday season was full of pain, sweat, insomnia, and FATIGUE!  I did however manage to get back to a normal replacement dose of hydrocortisone.  I think the fatigue was mostly due to waiting for my adrenal glands to wake up after several months of dexamethesone.  I can say that a couple of weeks ago I seemed to snap out of it and I think my adrenals are back to their normal underproductive selves ( I don't know yet with they will ever fully recover, but I still hold hope).

I don't have my latest test results yet, but I hope I am producing testosterone again.  I can say that the boys are back!  Three years of steroid balls was a drag.

As for the pain.  It's still with me.  The over the counter crap they give me just doesn't work.  All in all, I'm much more myself than I've been in years.  Between the ears at least.  I am mobile enough to do what I need to do.  No hiking, no mall walking.  I can do it, it's just a painful affair.

I think I have accepted more that having POEMS means living with it.  There may always be the doubt of being free of it.  It will likely mean difficulty in things most folks take for granted.  A gentleman from Canada with POEMS Syndrome died last fall.  He was 79, I believe.  A year before his death he wrote that his "old friend" POEMS was back and he felt like he was waiting for the last shoe to drop.  Sad as it may seem, I found this comforting as he still led a long life.  For most, life is full of some pain, and there is beauty in every sunrise.  Sounds pretty normal to me.