June 6, 2011 11:50 PM

From beyond the grave!

That's right! On Saturday night, a friend received a text message from another friend who has relocated to North Carolina asking for an immediate phone call. The local friend did so and responded to the news that, at a party in North Carolina, our friend heard from someone who used to live in our condo complaex and has since relocated to the area that I had died! If so, then death was certianly not very traumatic for me nor is heaven the paradise that I hear about every Sunday at church. Also, amazingly, all my current friends and acquaintances have passed away with me making the journey to the next life very transparent!

My death notwithstanding, today marked the first day of my photoporesis procedures. There really is not a lot to write about. All you do is lie there, they stick a needle into your arm, run your blood through a machine that spins and separates the components, treat the white blood cells with ultraviolet light and return the whole deal back to you. The problem is that it is a lengthy process(over 2 hours) requiring that you do not visit a rest room for that period of time. Today was a non-issue for me - we'll see what tomorrow brings. Also, you cannot move the arm that has the needle in it. being one handed greatly limits what you can do. So it is most assuredly a very boring time.

Now, the big question(s)! How does it work and what does it do to make things better? The answer is... They really don't know the answer. All they know is that they have employed tis procedure since the seventies and it has met with a lot of success.

As you can imagine, with others being treated as well, you swap war stories. Once again, I have come to realize how lucky I have been. A younger man was next me who was diagnosed just two weeks after his daughter was born - four years ago. He suffered tremendously with graft versus host disease especially with scleroderma(hardening of the skin and skin sores). Today he can barely walk and must ride a scooter - though the photophoresis treatments seem to be making some improvement. His GVHD was enough that they have him on a 400mg daily dosage of prednisone! Mine is 20. With all that prednisone, he has gained one hundred pounds and has swollen up excessively. None of these things have befallen me.

We also got our appointment schedule for the next 11 weeks - every Wednesday and Thursday at 8:00. This requires a 5:15 arising time. Ugh! But. as with all things, you do what you have to do.

The status is now - one down, many to go...

Bob