Thank you everybody who share their ideas ideas, suggestion, etc.
I am now starting a trial, an unexpected trial, for my left eye.
Unfortunately it's an off-label use drug trial, not a clinical trial that the company pays for and not something insurance will cover.
Imagine the shock when I saw this sign at the pharamcy.
Thanks to you who have donated to my medical costs. You've eased the burden of my new $150 every 3 week medication.
I'll be using the medication in my left eye only with the right eye as a control.
When Dr. Jon first looked into my left eye a sudden heavy silence fell over the room.
I know this silence. I'm too familiar with it.
It's the "Oh, that is baaaaadddd." Silence.
It's the "i-need-to-get-a-good-look-and-think" silence.
Dr. Josh took his time and I sat fidgeting wondering how bad it was. When he rolled back to his desk he started immediately talking treatment.
This is what I like: options. I had severe dryness, inflammation and irritation or GVHD of the left eye only. We plugged my upper tear duct to lock in moisture. He wrote a script for azythrmycin eye ointment to use as an eyegel.
You know if it's bad on the cornea research floor at Mass Eye and Ear its bad. He said I may be a candidate for a special eye patch, but Dr.Dana had put the cabosh on contacts years ago due to infection risk.
I am the perfect candidate for this trial. Dr. Jon verified I had tried everything else possible including: photopheresis, prophylactic doxyclyxline, artificial tears, twice daily hot compresses for 10minM flax seed oil, fish oil, restasis, eye plugs, RX contacts, eye flushing and on and on.
I knew what was coming. Dr.Dana has been after me for this trial forever, waiting for the perfect conditions where not only would I do the study, but I would pay for it. The time came.
Eye pain is the most excruciating followed by lung/rib pain then by abdominal pain. That's my opinion based on my experience.
As a perk, I do get upped to a special, priority patient status with the eye guru himself. I think if I had asked and resisted the trial from fear, I could have finagled his pager number, if not a cell or home phone number for access to the best eye care anytime, as an incentive to get me to sign on, but I did anyway.
After the new plug, the removal of the microfilaments, and two doses of the drops I'm feeling relief, but time will tell the rest.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."