I reached some decisions over the past few days. I realized I was mad as hell and not going to take it anymore.
I've contacted a different cancer center and hope to see a new oncologist pending their acceptance of my insurance. I told my oncologist I'm stopping photopheresis treatments and want to schedule having my catheter removed. I've done this treatment for 8 months now, twice weekly, with no measurable benefits. My skin is worse than ever.
I called my ophthalmologist and requested they send my records to the Boston Sight Foundation so I can apply for financial aid for the PROSE lens. My insurance company won't pay for it in NY and there's a chance they will in Boston. If accepted, I'll spend 2 weeks there getting fitted. Since this is the worst quality-of-life issue I face, I plan to push for it.
There comes a time in every chronic illness where you say, that's it. You put your faith in the medical community and believe they'll do everything in your best interests. Now I see that's not necessarily so.