After returning from MD Anderson, I spoke with my local eye Dr. about the hopeful options they presented to me there. Unfortunately, he feels that all of the options they presented to me there (other than the Sutent chemo drug) have significant risks of further vision loss. Because I only have one eye, he feels it best to try the Sutent drug and not pursue any of the other options at this time. I also spoke with a woman who is the head of the VHL Alliance. She is extremely knowledgeable on VHL and became a spokesperson after losing her husband 18 years ago. She also has a son living with VHL who is blind, after having tried all of the options they presented at MD Anderson. He also tried Sutent with no positive results. I plan to speak with him personally later this weekend. Needless to say, I am so disappointed. I was so excited after returning from MD Anderson & it's all been shot down. The constant ups & downs of raising my expectations and creating hope and then being let down is exhausting.
On top of that... beginning Monday evening, I noticed my vision drastically getting worse, as well as having a large black floater in my eye. It's like a big black fly is covering the center of my vision. As my eye moves, it moves too. It's driving me crazy & giving me headaches. I left several messages for my eye Dr. and FINALLY spoke with him yesterday afternoon. I told him I felt like I needed to be seen before the weekend because of the significant change in my vision. I knew that there was something wrong. Today I saw the Dr. I no longer have central vision & can't even see the eye chart unless I move around. The best I could get with movement was 20/200. The Dr. immediately noticed a MAJOR change that, believe it or not, it is unrelated to any of my existing tumors. There is no swelling, bleeding or leakage of fluid. What I have is a problem with the vitreous gel that lines the back of your eye. It is tugging so hard in the central portion that the layer is pulling itself away from my retina and distorting the central vision. The macular hole is like a men's button-down shirt that is two sized too small, forming a hole between the buttons. In addition to that hole, the men's shirt is also being tugged outward. This tugging is the gel trying to pull itself away. So now, what shall I do? He will touch base with me this weekend and I will page him if anything changes in my vision. If there are any changes, I will see him before Tuesday. If this does not resolve spontaneously, then it will require surgery to have the vitreous gel manually removed. Otherwise, the macular hole will increase in size. Stay tuned...
Also since returning from Houston, I was lucky enough to get the flu! Fortunately I recovered and am hoping for a sunny and warm weekend. We will be attending Tyler's 8th Grade Play - Bye, Bye Birdie - where he is part of the backstage crew.
I received a wonderful surprise this week! A group of my sorority sisters went together and surprised me with one of Oprah's "favorite things". I am now the proud owner of a new Kindle! The first book I downloaded was Kindle for Dummies! It will be very useful for me this week because it has an audio option and I can listen to books out loud. The other perk is that the font can be enlarged, even larger than large-print books. I am so grateful for their thoughtfulness. When I can see again, I will send along some personal thank-yous.
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