August 3, 2011 9:45 PM

Time for an update!

Today was my first visit to my oncologist in three months. The bottom line was to maintain the status quo - keep going with the photophoresis and don't change any of my medications. I did tell him about a swelling that exists in the area of my thyroid gland which he seemed unconcerned about but decided that I should have an MRI anyway. Long story short - we go back in a month to see how the photophoresis is doing and to get the MRI done. Otherwise, he does not feel that anything of concern exists - all my counts are fine.

As for the scleral lenses which I have had for a week, I'm still trying to get the hang of how to put them in efficiently. So far my record is three tries to get them in both eyes - not far off from a perfect two. But, this has happened only three times. Usually, its about six or seven total tries to get them in. If that were the only problem, I could live with it. However, they tend to fog up. So, even though I now have 20/20 vision in both eyes, it's like looking at the world on a London morning. They are coming out with some new lenses that are "new and improved" when it comes to "defogging" so maybe I'll have to go down that path. However, these lenses are still in the experimental state so nothing is guaranteed.

What else is new? Not much. My overall issue with being tired and weak still remains which makes the long walk at the hospital from the car to the photophoresis lab a challenging one. And, it costs me time with the grandchildren. Yesterday, my wife took the oldest two to Canterbury Shaker Village. I had to beg off because there would be no way that I could have kept up with the tour. However, looking at photophoresis patients who have been treated for a while, there is a corner to be turned and you do get back to "normal". I haven't turned that corner yet, but I have no doubt that I will in due time.

Tomorrow, it's up at 5 AM as I complete week nine of my treatments. It's hard to believe that that much time has gone by already.

It's hard to believe that the the two and a half year anniversary of my transplant is in exactly two weeks...

Bob