Hello Friends and Family!
After eleven hours straight of being poked and proded in the eye and other various parts of my body we made it back so the update may find me a little punchy!
The marathon started at the eye clinic and ended at the eye clinic. It was not good news as I learned that I have yet another issue which is a Macular Hole in the center of the eye. It shouldn't affect the study, but something that will need addressing. The way it is fixed is with an outpatient surgery which doesn't sound too bad, but the recovery will leave me in the dark with my head face down for at least seven days, oh what fun! Oh, and that would pretty much guarantee another surgery to repair the cataract which it will trigger. The optic nerve tumor is impressing all the doctors with its size, but all the doctors agree that there is no successful way to treat them. There has been a lot of scar tissue on the retina which most likely caused the hole. It is somthing that we will learn more about in the next few days, but likely they will want to watch how/if it progresses in the next few months.
Met with a team of doctors and came to the conclusion that they don't want us to go to DC tomorrow and have fun, they think it would be more fun to have more tests, Yipee! It became obvious that I would not be able to start the drug this week because all the test results would not be complete. The doctors still have many questions before they will approve me for the study. Say your prayers that we get more answers instead of more questions so they can determine if this is right for me.
Not sure exactly what tomorrow will bring other than more tests. We are still managing to laugh through all the frustrations since there really isn't anything else to do. Our goal tomorrow is to try and eat somewhere other than the hospital.
Love to All-
Kim
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