We took our family trip to Marco Island, FL in mid-June. At the last minute, Tyler brought his friend Philip with us (he'll be his college roommate at school in Wisconsin). This was a much-needed vacation for all and I think everyone thoroughly got their fill of relaxation, although maybe it was tougher for Steve as he had to assist me in a new environment. By the time I learned to navigate my way around our hotel room, it was time to come home. We stayed at a Marriott Beach Resort and Spa, and thanks to our friend Darlene Wood, we had the nicest room available in the hotel. It was a two-room lanai suite that walked right out to the beach and to a ginormous pool built around palm trees. The service was great. Every day they came by with frozen mango-scented iced washcloths and applied them to our faces as a pool-side refresher. They also brought around ice pops, cookies and drinks. Our hotel was located in a great spot where we could walk to all of our shopping and restaurant needs. We went miniature golfing, water biking, and the kids went parasailing as well. Our weather was just beautiful: 80s every day with an ocean breeze, and then a late afternoon storm which we'd watch and then go out to eat. My kids say it was their favorite vacation spot ever. The pool, beach, hotel, location and activities were the best we've ever experienced!
We returned from our trip and have been busy every since. My cousin Stacey got married in a beautiful, non-traditional outdoor wedding. We had appetizers and drinks outdoors before going inside for the reception. Everyone danced the night away -- even the blind lady. I was out there half the night. I never thought I could dance in the dark but it was just so much fun. Even my Aunt Winnie, who just had knee replacement surgery, danced.
Unfortunately, I drank a bit too much at the wedding as I had to be up at a fundraising event the following morning at 7:00 a.m. It was the Mud Run for breast cancer, a 5K annual event at the Lake County Fairgrounds. The glitch is that you run the 5K through an obstacle course of mud. Thankfully, I was not a runner; I was on the sidelines cheering on our team. Because it's a breast cancer event, people show up in large teams dressed the same -- e.g., pink tutus, tiaras, crazy socks, etc. It was so funny. We saw a few girls mud wrestling at the finish line, which was a water slide leading into a pool of mud. Any interested parties, contact me about next year's competition. We already have 20 people signed up. A free tee-shirt, necklace, two free drink tickets, and promotional samples come with the registration fee. I do this in honor of a friend who had breast cancer and passed away at the age of 48.
We have attended several graduation parties, and for the 4th of July, I went to a really nice neighborhood party. It had good company, good friends, good food, good drinks, not to mention good weather, finally. Our family took a day trip to Lake Geneva to close off the long 4th of July weekend.
Hard to believe with all the fun I've been having that I was able to fit in as many medical appointments as I did. I have done all my scans -- brain, ear, neck, back, lower spine -- and have been to the eye doctor five or six times since my last blog.
Regarding my eye, as previously mentioned, my biggest problem has been with the eye pressure/glaucoma. Most of my readings have been high and they've had to add additional medication for it. It still remains borderline high but they'll just watch it for now. When it was significantly high, they noticed my eye bleeding in my iris (the colored part) and I had to receive a chemo injection into my eye to stop the bleeding. I think the tech who numbed my eye was either new at this or didn't fully numb it, because, oh my gosh, it was excruciatingly painful. When you have a needle going into your eye and you have pain, you can't move. I was very freaked out because I thought something went wrong because I'd had this shot before and it didn't hurt as bad. The doctor re-numbed my eye and took a look, and re-checked my pressure. Instead of my pressure going down, there was now fluid to my eye, so he had to insert a needle to withdraw the fluid from my eyeball so it would not burst. This time went much better, thankfully. I wouldn't want to repeat that day. I think Suzanne felt so bad for me that she thought I needed a special prize, so she ordered me a "wine glass sippy cup." It's hysterical.
I've been back to the eye doctor and the pressure on my eye has gone down, the tumor is still unchanged in size, and the bleeding stopped. Yippee. The dizziness and headaches are not coming from my eye. I heard about a telescope implant but it is only FDA approved for cases when you're over age 75 and have a severe form of macular degeneration. Dr. Cohen said I'm definitely not a candidate for that but there may be something that's similar in the pre-trial phase that we just don't know about yet that might help with retinal vision loss or optic nerve vision loss. He also feels that the answer could be found in stem cell research and it's just a matter of time. He said as long as I don't kill my optic nerve completely, then I'll be a candidate for something down the line. He said my tumor appears visibly unchanged, yet I don't understand that because my vision is changing for the worse. The shadows are more blurry and everything is more dark. But, if nothing looks different, then maybe that means my vision can turn back someday.
I will do my abdomen/pelvic MRI on July 30 to make sure the clot is gone and to follow up on my kidney cancer growth. I do know my kidney function has worsened as I've not been able to receive contrast dyes, and this has never happened to me before so I hope nothing is up. In addition, the results from my last five MRIs were inconclusive as to whether or not a change as occurred due to my inability to receive the contrast. Sadly, I feel that the MRIs were a waste of my time. The doctor hopes he can get more information from a physical exam. It frustrates me because I've had some episodes of headaches, dizziness and lightheadedness and since it's not coming from my eye, I have no real definitive way of knowing the source until I get another scan. I had more lab work and urine testing done. Several weeks ago, prior to going to Florida, I had another bladder infection and they want to make sure it's gone.
Darlene Schick drove me last Tuesday to U of C for my MRI. Let's just say she doesn't like to drive in areas she's not familiar with. It was so funny. We had directions put on her phone to get to the hospital and somehow still missed our exit. We couldn't get off due to a median in the highway, and there we were, entering Hyde Park. We rolled up our windows worried about knives, loaded guns, etc. Then, something happened to her phone volume so we could barely hear it, and whenever we were listening to something important, the phone would ring. I tried to stay calm because Darlene was nearly freaking out, and we had Suzanne coach us by phone on how to get out of there. Ultimately we got to my appointment right on time and the rest of the day was fine, but we got a good laugh out of it.
Other than my appointments away from home, I've had several visits from the State and a local program for the blind. I finally got my cane with a roller ball from the State and had a 1.5 hour lesson learning how to navigate both in my house and outdoors. I got tips on how to find doorways (e.g., to find the third doorway on the right, hug the wall and count the doorways, but that's harder than it seems when you can't see). I learned how to sense different flooring with the cane, and how some walls are solid and some are hollow. We explored sidewalks, driveways, curbs, mailboxes, stop signs, crossing streets, and the slope of the street (the middle is the highest, and if you're not going straight up or down, then you're going crooked). We covered how to find where you are in relation to home. I tend to lean to the left in general, so she told me how to account for that. The hardest part for me is being in open areas because I can't figure out where I am. I aimed for a patio and ended up in the bushes. Basically, it just takes a lot of practice. Some people can do echolocation like a dolphin, which would be nice. I have so much more to learn, like going to the grocery store, mall, etc. I won't take my cane where it'll be too crowded because I'm afraid I'll whack someone with it.
My caseworker from the State didn't bring anything or do anything at our last appointment and we cut that visit short. Now she has a package for me but I don't know what it is. The girl from the local program for the blind is coming August 2 to help me with using my Victor Stream Reader for things besides books. I can upload to it all materials offered by the State -- podcasts, newspapers, magazines, books, and other things you'd put on an MP3 player. The guy from the Lighthouse for the Blind is learning how to use the iPad for the blind and he will train me afterward.
Last Tuesday I got a call from my friend Joy from The Chapel saying that she had a recumbent bike at her house that she was no longer using. It was a 30-year-old model that she was happy to pass along to me because she just got a new bike. She wanted to pay it forward because she said she got it for a penny, and she wouldn't take any money for it so now I'm thinking of what I can pay forward in turn. The bike is great for exercising my legs. On the first day I did 30 minutes, and I was so proud of myself.
We've got five more weeks of summer. Tyler has been busy getting ready for college. Alyssa is at day camp this week, which frees me up for another getaway. While she's at camp, I am spending the week with my friends Sheila and Barry. Compliments of them both, I flew to Atlanta and am joining them on a trip to Destin, Fl, to keep Sheila out of trouble while her husband works. We are doing this by going to the beach, hanging at the Embassy Suites pool, hitting the outlet mall, enjoying happy hours, etc. So far this summer has been very good to me indeed.
How interesting it is with all of my female escorts (Darlene, Suzanne, Delynn, Sheila, etc.) the looks we receive as I hang on their arms as they guide me around, help me through doorways, get me coffee, cut up my food, or we stroll down the beach. If only looks could talk. Lol :)
Still, since my last blog, I am looking forward to getting together with everybody before summer is over. The summer has been so crazy for me that I have been unable to reach out and call anyone to make plans. So sorry for anyone who has called me if I have not returned your call, but I promise to do so this week when everything settles down. Until then...
