Hope all is well with all of you & your families & you got to enjoy your summer! Just like most of you, August was spent trying to grasp every last minute of the "summer that never was." Unfortunately, that also meant going back to school & the start of a routine again. Wah...........
Tyler started high school at Libertyville High School & loves everything about it except for the homework. He plays soccer for their sophomore team & will go back to travel Eclipse soccer for the winter & spring sessions. Alyssa is now in the 1st grade. She loves it too & looks forward to it every day. She's just like me - a social butterfly & loves playdates every day. Alyssa is finally gone for a full day, leaving me MUCH NEEDED to myself to get things done! Steve continues to travel every week & covers the midwest sales region. He tried to stay home one more day a week to do office work, which is greatly appreciated & really helps when I am having a bad day.
Prior to school starting & before I got my glasses for distance, we took a weekend trip to Wisconsin Dells. We went with my relatives & stayed at The Wilderness on the Lake in 2 rooms for 18 people. What a blast! A comical part of the trip is when I was walking around with my camera & instead of taking pictures of my family - most were of strangers! Funny how the kids look so alike when their hair is wet, although it didn't help that I could barely see them! One man was so flattered that I wanted photos of his son & daughter. Little did he know!!! (ha ha)
Medically, things have been going a bit downhill lately. Following May's surgery, my vision was progressing well for about 8-10 weeks & then I noticed things to be more blurry & my close vision more out of focus as well. I saw my eye doctor, Jack Cohen, August 7th & he confirmed what I was hoping was not really true. The macular hole remains closed & the large lasered area is healing well also. The problem lies in the optic nerve tumor. The change in the size and shape of this tumor is what is causing my vision to change. He told me to proceed with corrective glasses for distance & close vision. However, they will not work well as most of my vision loss is not correctable. I got my glasses the following week & again this was confirmed. I see great for about 10 feet & then it's very grainy & I have many blind spots even within the close vision range.
Two weeks ago, I attended Tyler's high school soccer game & couldn't even locate a single player from our team. It was very frustrating. I'm going to try binoculars the next time. I rented an overhead projector-like scanner to use to read & see photos, yet am trying other products available before I choose the best equipment/magnifiers that work for me. I am working with the State of Illinois Department of Rehabilitation (vision department) with a woman named Elizabeth. She is also legally blind - which is how they diagnose me. She visits about every two weeks & developed a plan for me.
So far, I learned most of the braille alphabet & some basic words. I am finding that I'm a visual learner - not auditory or tactile (I HATED IT!). Next week, I'll try the walking cane. I have sweaty palms just thinking about it. I get around familiar places so well, but would need to use it if I was travelling somewhere strange at night (unless I had an escort so I wouldn't walk into anything). As a matter of fact, I went to Great America in August with my cousins and all the kids. Once it was dark, I was tripping a lot more & very uncomfortable. On the way to the parking lot, I walked straight into a handicap sign & went flying over a curb! I cut myself in several places and got a real bad headache. They really need to watch where they place those signs (LOL), although I did get a good laugh out of it.
I'm again looking for a chemo trial. Sutent doesn't appear to be the answer & hasn't helped anyone's eyes as of yet. It's also been found to be very toxic & I already feel bad enough without adding in another drug. These past two months, in addition to worsening vision, I've had an increase in nausea, headaches, dizziness, numbness on my left side & general achiness. I've also lost 10 pounds & am no more active, nor had a change to my diet. Recently, my lab work showed inflammation of the pancreas, which is probably contributing to some of my symptoms. My low potassium is probably causing some numbness as well as achy joints & fatigued muscles. I had an MRI of my abdomen, brain & ear on 9/10 and go next week (9/16) to get MRIs on my complete spine, as well as repeat labs. By next week, I should have some answers. On Thursday, I see my neurosurgeon & internist.
On a positive note, I have some trial software I'm trying called ZOOM TEXT which enlarges the computer print & will even read my e-mail to me. It costs about $1100 to purchase & I have about 40 more days to try it. As for reading, I can't read large print yet, but have read 5 books on the Kindle by using the audio & following the words. I love it! Thanks again to all who contributed : )
Sorry this is so lengthy. There has been a lot going on since my last entry! I'll try to blog more often & say less. Continue to keep me in your thoughts and prayers.
Thanks again, Kim
