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...
Tuesday, July 16, 2013
Sunday, June 2, 2013
Navigating with a walking cane, responding to email -- what will Kim learn next?
Most of you are already out enjoying the start of your summer. The Gillespies have three more days of school and then we will be there as well.
Tyler only has to take two finals and then he is through. He'll graduate Friday from Libertyville High School. He is scheduled to start college in the fall at the Univ. of Wisconsin Whitewater with the major being undecided. He is very excited and really looking forward to college, and knows at least six guys attending his school this fall. It's also only a 45-minute bus ride to UW Madison so he can attend their football games, and he has several friends attending there as well. As for his plans for summer, he still has been playing soccer and is planning to try out for the college team. Hopefully he'll make it as his last year and a half he's been unable to play in high school due to sports injuries.
Alyssa will be attending a bible day camp for a week and will do a one-week overnight camp in Wisconsin with six of her friends, with her focus being on horseback riding. She is thoroughly excited as each girl will be given a horse to take care of for the week, including grooming, feeding and everything. Every day they get to ride their horse for an hour. She will also get to do archery, wall climbing, and high-tension ropes. They have a lake, row boats, arts and crafts and a big campfire area. The food is incredible. They even offer Panera soups, salad bars, ice cream, slushies, soda, juices -- I could live there for a week. It's awesome. All the kids will stay in a cabin with bathroom facilities and a shower with seven girls and a counselor. She will probably also pool-hop, do arts, and lots of reading this summer.
As a family we plan to take Tyler's graduation trip June 21st for six days to Marco Island, FL. We have several free nights at a Marriott beachfront resort. I can't wait. It will be therapeutic for everybody as it has been quite a stressful few years.
I finally had someone come from the State last Wednesday who came with a blind rolling cane. OMG, I swore I would never hold one of these as long as I lived. My palms were sweating as she told me how to navigate my way through the house. She told me that after my next lesson or two, I would be able to walk several miles a day independently. Unfortunately, she did not bring me a cane to keep, and said it would take 4-6 weeks to order one, which is when she will come see me next. Whoever thought the process could take so long? I am on a search to purchase my own cane as a backup as she said they break easily and sometimes don't even last a year. Medical supply stores around here only carry cheaply made versions with a hard tip at the end, so you need to lift it continually to find your way, whereas the roller one you just push. I might just get one like that because I can get it quickly.
I had an appointment also last week with the Lighthouse for the Blind and was quite impressed with their services, except that I need to go to them for any assistance or training because they will not come to my house. In addition, all of the equipment is available for purchase only. They do not have a budget to give any equipment free of charge or discounted. I even had to pay for the appointment, even after Medicare and our health insurance. I will definitely return, yet I'm glad that I'm already hooked up with the State.
My caseworker from the State is scheduled to return this Tuesday. Hopefully she will have some of the equipment the State has ordered for me, yet she has much less memory due to multiple strokes and has been having trouble remembering what to bring and even how to use the equipment. If this visit goes as usual, I've decided to ask for a different caseworker because I have not learned much from her and I only have until October to complete all of my training.
This past week has not been very kind to me. I have had dizzy spells, headaches every day, and just to top it off, my sutures popped from my gyne surgery and my prolapsed bladder, etc., has returned. I am thoroughly depressed because I was finally able to go to the bathroom like a normal girl and now it's all back to the way it was for the past year and a half. Sadly, I have to have another surgery in another six weeks to try again. The next surgery will be a lot more involved as he will have to use a different technique, but hopefully it won't be too bad. I guess I was bragging too much about how easy everything was going and how finally I had a surgery without complications. I saw my doctor for my post-op five days prior and he said, "I hope you didn't just jinx yourself." Little did I know, I should have kept the thought to myself.
With regard to my headaches and light-headedness, it's hard for me to tell if it's coming from my eye or my brain. My vision has been even worse this past five weeks and I spent at least three of my last seven days in the dark. I see the eye doctor on June 10. Hopefully my tumor has not grown or changed and he will have an explanation. When I had my pressure checked at the Lighthouse again, it was high, and they're worried that I need to add more medication to treat the glaucoma. They told me the pressure could be damaging my optic nerve as well.
I spoke with my new internist, Dr. Jain, who ordered me a full set of MRI scans just to rule out any changes, so I will have full brain and spine and abdominal scans the week of the 17th, before we take our trip. Six hours in the MRI machine -- that should be fun. Then it's off to Florida.
Another added bonus the last five weeks, as my vision has worsened, is that I have been falling more -- a total of three times. I have torn my rotator cuff, hurt my elbow, sprained my wrist and thumb, and hurt my right hip. I've had two steroid injections in my left shoulder and two in my right hip. It's possible that my left ear deafness is also making my balance much worse and contributing to my falls as well. Dr. Jain took me off Coumadin after these falls, as he was worried I could fall, injure my head and cause a bleed -- which is much more dangerous than a blood clot. Also, we stopped all the weekly lab work. He had a physical therapist come out to do an evaluation on balance and safety of my home. The PT noticed my balance to be off, and in addition found some areas of concern at my house, e.g., areas of cracked sidewalk in the front walkway, wires laying on the floor across the family room, multiple shoes and backpacks strewn around, chairs are not pushed in, cabinet doors and the dishwasher door left open. She said it would be helpful to keep our home more organized as it is very important for blind people to know where everything is so they can navigate their home safely. This is an area that we are still working on improving.
In terms of organization, if anybody knows anyone in the Libertyville area on a personal level who wants summer work to help me with organization or be a personal aid this summer, I am looking for help and want to hire somebody that I can trust, as I'm afraid to let a stranger into my home who could walk out with whatever they want and I would never know it.
Also, if anyone knows of someone with a recumbent bike that they want to sell, I am very interested in buying one. I tried walking on the treadmill and did okay as I hung on, but it makes me somewhat dizzy with the motion and nervous to do it when no one is home. My doctor feels I need to be active due to my history of blood clots and recommended a recumbent bike. I'm completely down to taking the amount of steroids that my body would make on its own, but have not shed any of the 20 pounds that I gained over the last year. My endocrinologist said it could take months, if not a year, to lose the weight because I've been on high-dose steroids multiple times in my life, which makes it harder to lose the weight. She also said due to my weight, height, and level of inactivity, to maintain my weight, I can only eat 800 calories a day. Therefore, I really need to start moving.
I did receive a small gadget, two times the size of an iPhone, that plays books and has the capability of playing computer files, podcasts, MP3s, magazines, etc. And, the nicest part is, the books I upload from the computer (with the help of some friends) are free. I no longer have to wait for library books to come in. I have been very busy reading, or shall I say listening, to books. It's really nice. The device has a sleep timer, you can hook it up to external speakers and, in addition, the State can send me tapes from their library that I can play on it. I just got the first of a series of 20 books that is really good.
As for Tyler's cough, I spoke with a pulmonologist in Vernon Hills. Sadly, their office is closing on Friday and he does not know where his next office will be, but they are going to squeeze Tyler in sometime this week. He has a really good reputation. Alyssa's stomach has been doing really good, with no more stomach aches or throwing up. Things have quieted down, and hopefully it will not return if it was anxiety provoked.
The next few weeks, we have a lot of graduation parties to attend. My cousin Stacey is getting married on June 28. Her mother, Aunt Winnie, had a total knee replacement this past week and is now in a rehab center for a week, so she should hopefully be able to dance the night away at the wedding and walk Stacey down the aisle.
Thank God for my neighbors because I have had a very busy month of doctor appointments, on average at least 3-4 times per week. In addition, they have been very helpful with driving Alyssa to the school in the morning and picking up groceries and doing errands for us while they are out. My friends know how stressful things can be. As I've been mentioning monthly in the blog, this has been the hardest thing our family has had to go through, and not only do I need your prayers to save my health, but I need your prayers to bring our family closer together as we go through these difficult times. Sadly my vision will not return, so we all need to find a way to cope with it. We all look forward to the vacation to de-stress for a week and hopefully make some happy memories.
Hopefully sooner rather than later we can all get together this summer. Maybe we can meet at the Arlington Race Track or at a beach, restaurant or whatever, and get a group together to catch up. Time passes much too quickly and if you don't put something in the calendar, before you know it, summer will be over. Please email or call. I recently learned how to respond to an email (woo hoo!) so, surprise, I might even answer you back. Half the problem is finding the right button on the screen, but it works.
Enjoy your start of summer. Hopefully the rain and clouds will soon pass and I look forward to seeing you soon.
Tyler only has to take two finals and then he is through. He'll graduate Friday from Libertyville High School. He is scheduled to start college in the fall at the Univ. of Wisconsin Whitewater with the major being undecided. He is very excited and really looking forward to college, and knows at least six guys attending his school this fall. It's also only a 45-minute bus ride to UW Madison so he can attend their football games, and he has several friends attending there as well. As for his plans for summer, he still has been playing soccer and is planning to try out for the college team. Hopefully he'll make it as his last year and a half he's been unable to play in high school due to sports injuries.
Alyssa will be attending a bible day camp for a week and will do a one-week overnight camp in Wisconsin with six of her friends, with her focus being on horseback riding. She is thoroughly excited as each girl will be given a horse to take care of for the week, including grooming, feeding and everything. Every day they get to ride their horse for an hour. She will also get to do archery, wall climbing, and high-tension ropes. They have a lake, row boats, arts and crafts and a big campfire area. The food is incredible. They even offer Panera soups, salad bars, ice cream, slushies, soda, juices -- I could live there for a week. It's awesome. All the kids will stay in a cabin with bathroom facilities and a shower with seven girls and a counselor. She will probably also pool-hop, do arts, and lots of reading this summer.
As a family we plan to take Tyler's graduation trip June 21st for six days to Marco Island, FL. We have several free nights at a Marriott beachfront resort. I can't wait. It will be therapeutic for everybody as it has been quite a stressful few years.
I finally had someone come from the State last Wednesday who came with a blind rolling cane. OMG, I swore I would never hold one of these as long as I lived. My palms were sweating as she told me how to navigate my way through the house. She told me that after my next lesson or two, I would be able to walk several miles a day independently. Unfortunately, she did not bring me a cane to keep, and said it would take 4-6 weeks to order one, which is when she will come see me next. Whoever thought the process could take so long? I am on a search to purchase my own cane as a backup as she said they break easily and sometimes don't even last a year. Medical supply stores around here only carry cheaply made versions with a hard tip at the end, so you need to lift it continually to find your way, whereas the roller one you just push. I might just get one like that because I can get it quickly.
I had an appointment also last week with the Lighthouse for the Blind and was quite impressed with their services, except that I need to go to them for any assistance or training because they will not come to my house. In addition, all of the equipment is available for purchase only. They do not have a budget to give any equipment free of charge or discounted. I even had to pay for the appointment, even after Medicare and our health insurance. I will definitely return, yet I'm glad that I'm already hooked up with the State.
My caseworker from the State is scheduled to return this Tuesday. Hopefully she will have some of the equipment the State has ordered for me, yet she has much less memory due to multiple strokes and has been having trouble remembering what to bring and even how to use the equipment. If this visit goes as usual, I've decided to ask for a different caseworker because I have not learned much from her and I only have until October to complete all of my training.
This past week has not been very kind to me. I have had dizzy spells, headaches every day, and just to top it off, my sutures popped from my gyne surgery and my prolapsed bladder, etc., has returned. I am thoroughly depressed because I was finally able to go to the bathroom like a normal girl and now it's all back to the way it was for the past year and a half. Sadly, I have to have another surgery in another six weeks to try again. The next surgery will be a lot more involved as he will have to use a different technique, but hopefully it won't be too bad. I guess I was bragging too much about how easy everything was going and how finally I had a surgery without complications. I saw my doctor for my post-op five days prior and he said, "I hope you didn't just jinx yourself." Little did I know, I should have kept the thought to myself.
With regard to my headaches and light-headedness, it's hard for me to tell if it's coming from my eye or my brain. My vision has been even worse this past five weeks and I spent at least three of my last seven days in the dark. I see the eye doctor on June 10. Hopefully my tumor has not grown or changed and he will have an explanation. When I had my pressure checked at the Lighthouse again, it was high, and they're worried that I need to add more medication to treat the glaucoma. They told me the pressure could be damaging my optic nerve as well.
I spoke with my new internist, Dr. Jain, who ordered me a full set of MRI scans just to rule out any changes, so I will have full brain and spine and abdominal scans the week of the 17th, before we take our trip. Six hours in the MRI machine -- that should be fun. Then it's off to Florida.
Another added bonus the last five weeks, as my vision has worsened, is that I have been falling more -- a total of three times. I have torn my rotator cuff, hurt my elbow, sprained my wrist and thumb, and hurt my right hip. I've had two steroid injections in my left shoulder and two in my right hip. It's possible that my left ear deafness is also making my balance much worse and contributing to my falls as well. Dr. Jain took me off Coumadin after these falls, as he was worried I could fall, injure my head and cause a bleed -- which is much more dangerous than a blood clot. Also, we stopped all the weekly lab work. He had a physical therapist come out to do an evaluation on balance and safety of my home. The PT noticed my balance to be off, and in addition found some areas of concern at my house, e.g., areas of cracked sidewalk in the front walkway, wires laying on the floor across the family room, multiple shoes and backpacks strewn around, chairs are not pushed in, cabinet doors and the dishwasher door left open. She said it would be helpful to keep our home more organized as it is very important for blind people to know where everything is so they can navigate their home safely. This is an area that we are still working on improving.
In terms of organization, if anybody knows anyone in the Libertyville area on a personal level who wants summer work to help me with organization or be a personal aid this summer, I am looking for help and want to hire somebody that I can trust, as I'm afraid to let a stranger into my home who could walk out with whatever they want and I would never know it.
Also, if anyone knows of someone with a recumbent bike that they want to sell, I am very interested in buying one. I tried walking on the treadmill and did okay as I hung on, but it makes me somewhat dizzy with the motion and nervous to do it when no one is home. My doctor feels I need to be active due to my history of blood clots and recommended a recumbent bike. I'm completely down to taking the amount of steroids that my body would make on its own, but have not shed any of the 20 pounds that I gained over the last year. My endocrinologist said it could take months, if not a year, to lose the weight because I've been on high-dose steroids multiple times in my life, which makes it harder to lose the weight. She also said due to my weight, height, and level of inactivity, to maintain my weight, I can only eat 800 calories a day. Therefore, I really need to start moving.
I did receive a small gadget, two times the size of an iPhone, that plays books and has the capability of playing computer files, podcasts, MP3s, magazines, etc. And, the nicest part is, the books I upload from the computer (with the help of some friends) are free. I no longer have to wait for library books to come in. I have been very busy reading, or shall I say listening, to books. It's really nice. The device has a sleep timer, you can hook it up to external speakers and, in addition, the State can send me tapes from their library that I can play on it. I just got the first of a series of 20 books that is really good.
As for Tyler's cough, I spoke with a pulmonologist in Vernon Hills. Sadly, their office is closing on Friday and he does not know where his next office will be, but they are going to squeeze Tyler in sometime this week. He has a really good reputation. Alyssa's stomach has been doing really good, with no more stomach aches or throwing up. Things have quieted down, and hopefully it will not return if it was anxiety provoked.
The next few weeks, we have a lot of graduation parties to attend. My cousin Stacey is getting married on June 28. Her mother, Aunt Winnie, had a total knee replacement this past week and is now in a rehab center for a week, so she should hopefully be able to dance the night away at the wedding and walk Stacey down the aisle.
Thank God for my neighbors because I have had a very busy month of doctor appointments, on average at least 3-4 times per week. In addition, they have been very helpful with driving Alyssa to the school in the morning and picking up groceries and doing errands for us while they are out. My friends know how stressful things can be. As I've been mentioning monthly in the blog, this has been the hardest thing our family has had to go through, and not only do I need your prayers to save my health, but I need your prayers to bring our family closer together as we go through these difficult times. Sadly my vision will not return, so we all need to find a way to cope with it. We all look forward to the vacation to de-stress for a week and hopefully make some happy memories.
Hopefully sooner rather than later we can all get together this summer. Maybe we can meet at the Arlington Race Track or at a beach, restaurant or whatever, and get a group together to catch up. Time passes much too quickly and if you don't put something in the calendar, before you know it, summer will be over. Please email or call. I recently learned how to respond to an email (woo hoo!) so, surprise, I might even answer you back. Half the problem is finding the right button on the screen, but it works.
Enjoy your start of summer. Hopefully the rain and clouds will soon pass and I look forward to seeing you soon.
Tuesday, April 23, 2013
Surprise! The clot is gone!
Here we are, April 23rd, still in spring, and we have set a major record for the wettest spring ever. We came close to setting the coldest record as well. No surprise for any of you living in Chicago. Although, it looks like after this week we're heading for a turnaround and the 70s are on the way.
On April 18 I finally had my prolapsed areas propped up where they belong, inside the body, with a sling. Surgery went well with minimal bleeding, except that I required a catheter to go home with for four days. Yesterday I got the catheter out and let me tell you how wonderful it is to pee in a normal amount again without even pushing. If you ever had this, you would know what I mean. As for the bleeding, I received platelets ahead of time and I'm back on the Coumadin.
Before the surgery, I went for an ultrasound to check on the blood clot status of my legs. Surprisingly enough, after 45 minutes, the ultrasound tech was unable to locate any clots. So, it has been determined that the type of blood clot I produced is caused spontaneously and goes away spontaneously. While this may sound good, I am at a 30% higher risk of producing further clots not related to surgery. Now the plan is to keep me on blood thinners indefinitely but we will reevaluate that in about a year. The good news is the type of blood clot I produced will never cause me to have a stroke to the brain. Instead, it's the kind that goes to the lung, which is better than the brain and I have a filter to catch it. I just need to be aware of any leg swelling or pain reoccurring. It is truly amazing to me that a clot that went from my left ankle to the top of my rib cage could spontaneously go away.
As for my weight, I still am up 20 lbs., yet we had to increase my steroids both prior to and after the surgery. So hopefully sometime by summer I'll have some hopes of getting my body back.
Following the surgery, they basically told me to take it easy for the next 4-6 weeks and that any increased activity would cause more cramping and pressure and bladder spasms. Guess I should put my vigorous aerobic activity on hold, right? He he he. As a matter of fact, I was just joking with the kids that when they take the dog for a walk they should take their mom for a walk, too, so that at least I'll have some form of exercise.
I have yet to get to my neuro and kidney scans this month but hopefully by the end of May I'll have that all completed.
As for my eye, that's a chapter in itself. I've had more bad than good days this past month. I saw the doctor two weeks ago and he sees no reason for the changes by looking at my eye, but said it's probably due to glaucoma or immeasurable tumor growth that's causing further optic nerve damage. It has been very dark more than light and I feel like I'm living underground right now since it's so pitch black and there is no contrast. It's been very hard to navigate my house on days like this.
I have been trying to use more of the tools that the state has provided me to get by, yet I think a lot of it needs continued practice and I need to improve in my computer skills. Last month I mentioned updating my iPad to incorporate Siri but I was encouraged by multiple visually impaired specialists to get an iPad 4 and have it set specifically for all my needs, with all of my files and education apps, so I did. This also enables me to talk to Google and the Internet. I still need to take a class from Apple to learn more ways to use it for my benefit. I used money from the GiveForward collection to purchase my new iPad, so my thanks go out to everyone who contributed. I should be able to get cane training started soon.
My new internist had set up for a social worker to visit and look into getting further aid for help in the home and driving, yet again this avenue was turned down. Sadly enough, it seems to be more abused than used for people who really need the help. I have decided to just go ahead and hire somebody so I can finally get my house in order and figure out a better system, as it's been seven months and I am not foreseeing my vision coming back. (Still, I keep praying for my miracle.) Presently I'm looking for any ideas as it would be much easier to hire somebody who I know I can trust to be in my house and know that they would not be walking out with things that belong to me, because I wouldn't see it. Maybe a college student over the summer. I'd like to clean out closets, organize my clothes and paperwork, and organize my house in general. I know the state can give me a list of personnel and it recommends I pay the going rate of $11.55 per hour, which isn't that bad. I just need to find a good match. If you have any ideas or suggestions, send them my way or call me.
The positive side of my social worker visit is they now send a nurse to my house so I don't need to go to the hospital every week for blood draws, which saves me and my driver something like 1.5 hours per week. And, I get my results much more efficiently, within the same day, by email.
Steve, Alyssa and I recently went to a support group in Carol Stream for the visually impaired and their families. It met for two hours and basically gave everyone the opportunity to talk about some of the stress areas that they found difficult to deal with, and those that have been visually impaired a long time helped by giving suggestions. The facilitator herself is almost completely blind so she knows first-hand how to deal with things of this nature. I later found there's a small support group that meets monthly in Mundelein. Other than that, the only places that offer support groups are nursing homes. I plan to attend the Mundelein group and find out if they have support services for the family as well. Not only am I finding it difficult to adapt to losing my eyesight, but my family is having a difficult time dealing with my condition, too. My vision loss affects not only me but everybody in my family. The only way I think you can approach it is with everybody working together. There's got to be a way to do this without me feeling like a burden, because that's the hardest part. I know it's hard and it sucks, but this is the way it is and we have to deal with it.
Tyler is graduating on June 7 and I gave him the option of having a party or taking a trip as a family, and he thankfully chose the trip. We're presently looking at a possible cruise or beach trip. Do you think the Gillespies could have good luck on a Carnival cruise ship???? They're practically giving these cruises away. Curiously, I'm the one looking for a destination and I'm the one who can't see. I'll see if my Aunt Jan and Aunt Winnie, the travel agents, have any good ideas. Alyssa gets off school the same week as Tyler, and Steve's parents are coming in for Tyler's graduation and Alyssa's dance recital. We'll leave on our trip shortly after that.
We should have many May flowers after our April showers. I look forward to getting out of my house again soon. I hope to see a lot of you this summer as we finish up our last month of school.
On April 18 I finally had my prolapsed areas propped up where they belong, inside the body, with a sling. Surgery went well with minimal bleeding, except that I required a catheter to go home with for four days. Yesterday I got the catheter out and let me tell you how wonderful it is to pee in a normal amount again without even pushing. If you ever had this, you would know what I mean. As for the bleeding, I received platelets ahead of time and I'm back on the Coumadin.
Before the surgery, I went for an ultrasound to check on the blood clot status of my legs. Surprisingly enough, after 45 minutes, the ultrasound tech was unable to locate any clots. So, it has been determined that the type of blood clot I produced is caused spontaneously and goes away spontaneously. While this may sound good, I am at a 30% higher risk of producing further clots not related to surgery. Now the plan is to keep me on blood thinners indefinitely but we will reevaluate that in about a year. The good news is the type of blood clot I produced will never cause me to have a stroke to the brain. Instead, it's the kind that goes to the lung, which is better than the brain and I have a filter to catch it. I just need to be aware of any leg swelling or pain reoccurring. It is truly amazing to me that a clot that went from my left ankle to the top of my rib cage could spontaneously go away.
As for my weight, I still am up 20 lbs., yet we had to increase my steroids both prior to and after the surgery. So hopefully sometime by summer I'll have some hopes of getting my body back.
Following the surgery, they basically told me to take it easy for the next 4-6 weeks and that any increased activity would cause more cramping and pressure and bladder spasms. Guess I should put my vigorous aerobic activity on hold, right? He he he. As a matter of fact, I was just joking with the kids that when they take the dog for a walk they should take their mom for a walk, too, so that at least I'll have some form of exercise.
I have yet to get to my neuro and kidney scans this month but hopefully by the end of May I'll have that all completed.
As for my eye, that's a chapter in itself. I've had more bad than good days this past month. I saw the doctor two weeks ago and he sees no reason for the changes by looking at my eye, but said it's probably due to glaucoma or immeasurable tumor growth that's causing further optic nerve damage. It has been very dark more than light and I feel like I'm living underground right now since it's so pitch black and there is no contrast. It's been very hard to navigate my house on days like this.
I have been trying to use more of the tools that the state has provided me to get by, yet I think a lot of it needs continued practice and I need to improve in my computer skills. Last month I mentioned updating my iPad to incorporate Siri but I was encouraged by multiple visually impaired specialists to get an iPad 4 and have it set specifically for all my needs, with all of my files and education apps, so I did. This also enables me to talk to Google and the Internet. I still need to take a class from Apple to learn more ways to use it for my benefit. I used money from the GiveForward collection to purchase my new iPad, so my thanks go out to everyone who contributed. I should be able to get cane training started soon.
My new internist had set up for a social worker to visit and look into getting further aid for help in the home and driving, yet again this avenue was turned down. Sadly enough, it seems to be more abused than used for people who really need the help. I have decided to just go ahead and hire somebody so I can finally get my house in order and figure out a better system, as it's been seven months and I am not foreseeing my vision coming back. (Still, I keep praying for my miracle.) Presently I'm looking for any ideas as it would be much easier to hire somebody who I know I can trust to be in my house and know that they would not be walking out with things that belong to me, because I wouldn't see it. Maybe a college student over the summer. I'd like to clean out closets, organize my clothes and paperwork, and organize my house in general. I know the state can give me a list of personnel and it recommends I pay the going rate of $11.55 per hour, which isn't that bad. I just need to find a good match. If you have any ideas or suggestions, send them my way or call me.
The positive side of my social worker visit is they now send a nurse to my house so I don't need to go to the hospital every week for blood draws, which saves me and my driver something like 1.5 hours per week. And, I get my results much more efficiently, within the same day, by email.
Steve, Alyssa and I recently went to a support group in Carol Stream for the visually impaired and their families. It met for two hours and basically gave everyone the opportunity to talk about some of the stress areas that they found difficult to deal with, and those that have been visually impaired a long time helped by giving suggestions. The facilitator herself is almost completely blind so she knows first-hand how to deal with things of this nature. I later found there's a small support group that meets monthly in Mundelein. Other than that, the only places that offer support groups are nursing homes. I plan to attend the Mundelein group and find out if they have support services for the family as well. Not only am I finding it difficult to adapt to losing my eyesight, but my family is having a difficult time dealing with my condition, too. My vision loss affects not only me but everybody in my family. The only way I think you can approach it is with everybody working together. There's got to be a way to do this without me feeling like a burden, because that's the hardest part. I know it's hard and it sucks, but this is the way it is and we have to deal with it.
Tyler is graduating on June 7 and I gave him the option of having a party or taking a trip as a family, and he thankfully chose the trip. We're presently looking at a possible cruise or beach trip. Do you think the Gillespies could have good luck on a Carnival cruise ship???? They're practically giving these cruises away. Curiously, I'm the one looking for a destination and I'm the one who can't see. I'll see if my Aunt Jan and Aunt Winnie, the travel agents, have any good ideas. Alyssa gets off school the same week as Tyler, and Steve's parents are coming in for Tyler's graduation and Alyssa's dance recital. We'll leave on our trip shortly after that.
We should have many May flowers after our April showers. I look forward to getting out of my house again soon. I hope to see a lot of you this summer as we finish up our last month of school.
Wednesday, March 20, 2013
Head to toe, ready to go
Today is the first day of spring, although it almost feels like April Fools' Day because the weather is so abnormally cold. Most of you will be heading out of town shortly for your spring break trips, hopefully somewhere warm. The Gillespies will be staying in cool, chilly, crappy Chicago.
Instead of giving you a two-month rundown by week, I'll give you a head-to-toe update. Neurologically, nothing has changed and all seems a-okay, although I am due for some MRI scans of my brain and spine next month. I did meet with the new ENT physician at U of C who, interestingly enough, recommended a procedure to help me with my hearing. It entails a screw drilled into the bone behind my ear on the non-hearing (left) side, which when healed and a cover is applied to it, will transfer sound by bone conduction from the non-hearing side to the hearing side. It's a two-hour surgery, non-bloody and outpatient, which doesn't sound that bad. My biggest fear is how it will affect my MRI scans in the future because metal alters the magnetics of the MRI. So, I have to research this a bit more before giving it a thumbs-up.
As for my eyes, I continue to have good and bad days. I wish I could figure out what causes my vision to become so dramatically clear one day yet so dark and completely blurry the next. This past weekend, I went to a dance show. Sitting in the 8th row, I was able to see the dancers on the stage in full costume and in color. I'm not sure if it was due to the contrast with the lighting, but I could see like I could six months ago. I've also been to the movie theater and was able to see the movie and only needed some narration during the silent times. And I could read my email one day. But, just as fast as I have it, it is gone. The doctor's theory is that it has more to do with the changing shape of my eye, either throughout the day or due to the changing pressure. My normal pressure should be under 15-20, and mine lately had been in the 30s. Yet, now that I'm more managed on glaucoma drops, I got my pressure down to a 13. I'm now being followed by a glaucoma specialist as well.
In my last blog I mentioned some downsides of getting the gamma knife to the brain stem. Another is that it affects your saliva and teeth. The combination of the gamma knife and steroids that I've been on causes tooth cavities and breakage. So I recently broke a tooth, had a wisdom tooth pulled, and a crown placed on another tooth.
I am back to my regular steroid dose again as of last week and I'm hoping that this means my extra 15-20 pounds that I gained in fluids will start to shed. I only have two pair of "fat pants" so I'm wearing the same two pair all the time. I have vowed not to put on a swimming suit until my weight is down. It's all in my waist but my legs are normal, so it looks kind of funny.
My biggest dilemma, besides that one, is what to do with my kidney disease. I've got two doctors giving me almost completely opposite plans of care, yet they studied together, so when I get my next set of MRI scans, I need to decide about getting another opinion. Dan Dalton, the kidney doctor at Northwestern Memorial, recommends no further resection of the kidney cancer, but instead removal and a live donor kidney transplant. Unfortunately, he doesn't think I'd survive dialysis and he's also not sure I could live through the transplant procedure. So I'm leaning more with the doctors at U of C who feel that they are still able to surgically remove more bad areas of my kidney and avoid transplant completely for at least a few years. In the meantime, I need to look for a live donor who is O-Positive. I spoke with the kidney transplant center at NW Memorial, and I was told that I could not do a direct live donor transplant since I have kidney cancer. You need to be cancer-free for one year, meaning I'd have to have it resected and be on dialysis for a year prior to getting this kidney. I also found out that you have five times the chance of dying under dialysis. But on the plus side, transplants are not as bad anymore with the anti-rejection drugs being less toxic, so you're not as sick, and in some cases you don't even need the drugs.
The good old prolapse issue will be handled in early May. Once I am off Coumadin for my blood clot, which should be sometime at the end of April, I'll wait a couple weeks before having the urogynecology surgery. As for the blood clot, I'm wearing the support compression sock on my left leg and I get my clotting level checked weekly. I'll have an ultrasound to check if the clot is breaking up or getting smaller or larger on April 3. At that time they'll check my right leg to see if any clots have developed there. After seeing two hematologists and giving 50++ tubes of blood, they have still not been able to figure out the cause of the blood clots. I developed one in June and one in November, but they may never figure out why. It's kind of scary.
My final, largest organ is my skin. I saw the dermatologist several times in the last month for some scabbed over areas that have just never healed. I had eight biopsies done, and four of them came back as basil or squamous cell; two came back as a changing into a suspicious, pre-cancerous state; and the other two areas were scar tissue. Tomorrow I'm scheduled to have the first of two Mohs surgeries to remove two of the cancers, and two weeks later I'll have the other two areas removed. The suspicious areas they will freeze.
I went to a new internist Monday, so I can switch all my care over to the U of C and have somebody from every specialty there. The new doctor is Dr. Jain. On the good side, he's young (about 40) but on the downside he's never had a VHL patient. He was very helpful and has already initiated efforts for me to receive help in the home through my Medicare. He feels I should get it through Medicare as I am housebound and disabled enough to require help. This is through a different department than the Dept. of Rehab, which denied me any assistance from the State. Today a nurse came to get my baseline medical history and drew blood, and Friday I have a social worker coming to evaluate me for occupational therapy and a home health aide for at least three days a week. This aide, if approved, would be able to do housekeeping, laundry, serve meals - basic household chores. They won't drive me anywhere, though. The social worker needs to check to see if we can get my neighbor Suzanne on the plan so that she can start to receive benefits through my insurance company, because she drives me to every doctor appointment and she does so much more for me, whether local or two hours away. Sometimes it's an eight-hour day and she should be compensated, because she has been a blessing and she is a wonderful, thoughtful person who I couldn't do without.
I am now able to read my email and follow Facebook through my iPad. Suzanne's son Jack set it up so that it talks to me. It's awesome. I also got a Netflix account through a friend so now I can watch movies for free. What Jack will do next is set up my iPad so that I'll be able to talk to it like Siri, but it'll take a couple days to install and set up the program. So hopefully one day soon you'll see me sending you something on Facebook or email again.
I've also been reading books on tape and I saw two of the authors this week. Jodi Picoult had a sold-out book signing at Libertyville High School and I went with my college sorority sister Jeryl. We both brought a book to be signed and had a photo taken with her. Last night I went out with my neighborhood book club friends and saw Jan Lancaster, who is so funny and I thought I'd die laughing. Everybody bought a book and had it signed except for me because she had nothing on audio. I plan to get her next book when it is available on audio and have her sign it, because she lives locally in Lake Forest.
Tyler returned to soccer this past month and has actually played a few games. After realizing how much he missed it over the past six months, he decided he really wants to try out for the college team at U of W Whitewater. He recently contacted the coach and is going to attend a camp this weekend with the team. Unfortunately it'll be like 26 degrees outside. Otherwise he is right on target for college and we just now need to hope and pray that we receive some financial assistance, as you all know how expensive school is. On a medical note, Tyler is due to repeat his brain MRI and possibly had more testing of his other VHL-prone areas sometime before he leaves for college. So far everything is clear. He needs to see the eye doctor again, too.
Alyssa needs to get her blood drawn for the VHL marker to see if she has the same genetic makeup as me (hopefully not), which can be obtained at U of C free of charge. She still stays busy with all her Girl Scouts, jazz and tap dancing, basketball, choir, and soccer. In addition, she finds free time to play on the computer making videos or playing with her American Girl dolls.
Steve has finally completed year-one with his new company. He's been very busy and still likes his job even though sales have been a bit slow the past few months. He still finds his life very stressful and has started exercising to help cope with that.
As for plans for spring break, we're planning to go bowling, see a movie, see a play (Alice in Wonderland), and maybe do some arts and crafts. Tyler is very excited as he is going to Wisconsin Dells with his best friend Landon and his family for three days. Hopefully we'll be able to take a family trip together before Tyler leaves for college. NOT Disney World. Somewhere totally different.
I look forward to hearing how all your vacations went. Give me a call when you get back from your spring break and hopefully we'll be able to go out for lunch and actually sit outside someday soon. Only two more months left of school. I can't believe it. May your travels be safe and sunny.
Instead of giving you a two-month rundown by week, I'll give you a head-to-toe update. Neurologically, nothing has changed and all seems a-okay, although I am due for some MRI scans of my brain and spine next month. I did meet with the new ENT physician at U of C who, interestingly enough, recommended a procedure to help me with my hearing. It entails a screw drilled into the bone behind my ear on the non-hearing (left) side, which when healed and a cover is applied to it, will transfer sound by bone conduction from the non-hearing side to the hearing side. It's a two-hour surgery, non-bloody and outpatient, which doesn't sound that bad. My biggest fear is how it will affect my MRI scans in the future because metal alters the magnetics of the MRI. So, I have to research this a bit more before giving it a thumbs-up.
As for my eyes, I continue to have good and bad days. I wish I could figure out what causes my vision to become so dramatically clear one day yet so dark and completely blurry the next. This past weekend, I went to a dance show. Sitting in the 8th row, I was able to see the dancers on the stage in full costume and in color. I'm not sure if it was due to the contrast with the lighting, but I could see like I could six months ago. I've also been to the movie theater and was able to see the movie and only needed some narration during the silent times. And I could read my email one day. But, just as fast as I have it, it is gone. The doctor's theory is that it has more to do with the changing shape of my eye, either throughout the day or due to the changing pressure. My normal pressure should be under 15-20, and mine lately had been in the 30s. Yet, now that I'm more managed on glaucoma drops, I got my pressure down to a 13. I'm now being followed by a glaucoma specialist as well.
In my last blog I mentioned some downsides of getting the gamma knife to the brain stem. Another is that it affects your saliva and teeth. The combination of the gamma knife and steroids that I've been on causes tooth cavities and breakage. So I recently broke a tooth, had a wisdom tooth pulled, and a crown placed on another tooth.
I am back to my regular steroid dose again as of last week and I'm hoping that this means my extra 15-20 pounds that I gained in fluids will start to shed. I only have two pair of "fat pants" so I'm wearing the same two pair all the time. I have vowed not to put on a swimming suit until my weight is down. It's all in my waist but my legs are normal, so it looks kind of funny.
My biggest dilemma, besides that one, is what to do with my kidney disease. I've got two doctors giving me almost completely opposite plans of care, yet they studied together, so when I get my next set of MRI scans, I need to decide about getting another opinion. Dan Dalton, the kidney doctor at Northwestern Memorial, recommends no further resection of the kidney cancer, but instead removal and a live donor kidney transplant. Unfortunately, he doesn't think I'd survive dialysis and he's also not sure I could live through the transplant procedure. So I'm leaning more with the doctors at U of C who feel that they are still able to surgically remove more bad areas of my kidney and avoid transplant completely for at least a few years. In the meantime, I need to look for a live donor who is O-Positive. I spoke with the kidney transplant center at NW Memorial, and I was told that I could not do a direct live donor transplant since I have kidney cancer. You need to be cancer-free for one year, meaning I'd have to have it resected and be on dialysis for a year prior to getting this kidney. I also found out that you have five times the chance of dying under dialysis. But on the plus side, transplants are not as bad anymore with the anti-rejection drugs being less toxic, so you're not as sick, and in some cases you don't even need the drugs.
The good old prolapse issue will be handled in early May. Once I am off Coumadin for my blood clot, which should be sometime at the end of April, I'll wait a couple weeks before having the urogynecology surgery. As for the blood clot, I'm wearing the support compression sock on my left leg and I get my clotting level checked weekly. I'll have an ultrasound to check if the clot is breaking up or getting smaller or larger on April 3. At that time they'll check my right leg to see if any clots have developed there. After seeing two hematologists and giving 50++ tubes of blood, they have still not been able to figure out the cause of the blood clots. I developed one in June and one in November, but they may never figure out why. It's kind of scary.
My final, largest organ is my skin. I saw the dermatologist several times in the last month for some scabbed over areas that have just never healed. I had eight biopsies done, and four of them came back as basil or squamous cell; two came back as a changing into a suspicious, pre-cancerous state; and the other two areas were scar tissue. Tomorrow I'm scheduled to have the first of two Mohs surgeries to remove two of the cancers, and two weeks later I'll have the other two areas removed. The suspicious areas they will freeze.
I went to a new internist Monday, so I can switch all my care over to the U of C and have somebody from every specialty there. The new doctor is Dr. Jain. On the good side, he's young (about 40) but on the downside he's never had a VHL patient. He was very helpful and has already initiated efforts for me to receive help in the home through my Medicare. He feels I should get it through Medicare as I am housebound and disabled enough to require help. This is through a different department than the Dept. of Rehab, which denied me any assistance from the State. Today a nurse came to get my baseline medical history and drew blood, and Friday I have a social worker coming to evaluate me for occupational therapy and a home health aide for at least three days a week. This aide, if approved, would be able to do housekeeping, laundry, serve meals - basic household chores. They won't drive me anywhere, though. The social worker needs to check to see if we can get my neighbor Suzanne on the plan so that she can start to receive benefits through my insurance company, because she drives me to every doctor appointment and she does so much more for me, whether local or two hours away. Sometimes it's an eight-hour day and she should be compensated, because she has been a blessing and she is a wonderful, thoughtful person who I couldn't do without.
I am now able to read my email and follow Facebook through my iPad. Suzanne's son Jack set it up so that it talks to me. It's awesome. I also got a Netflix account through a friend so now I can watch movies for free. What Jack will do next is set up my iPad so that I'll be able to talk to it like Siri, but it'll take a couple days to install and set up the program. So hopefully one day soon you'll see me sending you something on Facebook or email again.
I've also been reading books on tape and I saw two of the authors this week. Jodi Picoult had a sold-out book signing at Libertyville High School and I went with my college sorority sister Jeryl. We both brought a book to be signed and had a photo taken with her. Last night I went out with my neighborhood book club friends and saw Jan Lancaster, who is so funny and I thought I'd die laughing. Everybody bought a book and had it signed except for me because she had nothing on audio. I plan to get her next book when it is available on audio and have her sign it, because she lives locally in Lake Forest.
Tyler returned to soccer this past month and has actually played a few games. After realizing how much he missed it over the past six months, he decided he really wants to try out for the college team at U of W Whitewater. He recently contacted the coach and is going to attend a camp this weekend with the team. Unfortunately it'll be like 26 degrees outside. Otherwise he is right on target for college and we just now need to hope and pray that we receive some financial assistance, as you all know how expensive school is. On a medical note, Tyler is due to repeat his brain MRI and possibly had more testing of his other VHL-prone areas sometime before he leaves for college. So far everything is clear. He needs to see the eye doctor again, too.
Alyssa needs to get her blood drawn for the VHL marker to see if she has the same genetic makeup as me (hopefully not), which can be obtained at U of C free of charge. She still stays busy with all her Girl Scouts, jazz and tap dancing, basketball, choir, and soccer. In addition, she finds free time to play on the computer making videos or playing with her American Girl dolls.
Steve has finally completed year-one with his new company. He's been very busy and still likes his job even though sales have been a bit slow the past few months. He still finds his life very stressful and has started exercising to help cope with that.
As for plans for spring break, we're planning to go bowling, see a movie, see a play (Alice in Wonderland), and maybe do some arts and crafts. Tyler is very excited as he is going to Wisconsin Dells with his best friend Landon and his family for three days. Hopefully we'll be able to take a family trip together before Tyler leaves for college. NOT Disney World. Somewhere totally different.
I look forward to hearing how all your vacations went. Give me a call when you get back from your spring break and hopefully we'll be able to go out for lunch and actually sit outside someday soon. Only two more months left of school. I can't believe it. May your travels be safe and sunny.
Monday, January 14, 2013
Here's to a new me at U of C
December was the University of Chicago month for me. As previously mentioned, the university recently opened a VHL clinical center. I was one of the first 10 lucky patients to go through and meet the panel of doctors. It took about 3-4 days to meet all eight, but it was certainly much more comforting to hear VHL spoken as a common term instead of an enigma. Usually I would spend half of my appointments explaining what my disease is to my doctors, and now I feel like I am in good hands and they can answer my questions for me.
The way it works is you see the various specialties, and then all the doctors meet together and discuss your case to decide the best plan of action and medications to use, based on what's going on in other areas of your body. All eight doctors now know what's going on, and I no longer need to fill them in, which is key for me.
Not only have I found them to be knowledgeable, but at least one doctor from each specialty calls me at least once a week. They seem very concerned and willing to make changes to my present medication schedules to make things not only easier for me, but to make me feel better. I'm trying to wean off my steroids, for example, and they are working very closely at monitoring that process and how I feel.
Through my appointments, they found that I have a hypothyroid problem. They also found that my kidney artery is constricted, and are recommending surgery for that on Feb. 1, as they feel it has caused my blood pressure to increase and kidney function to decrease. They're trying to improve my digestion by giving me different enzymes for my pancreas to take when I eat, which will also give me energy because I'll actually absorb what I eat. Neurologically they're not doing anything differently.
They are saying I never should have gotten the lifetime gamma knife dose (2+ hours of brain radiation) that I got back in 2007 or 2008 because I caused myself damage to the area surrounding the brain stem. The radiation was supposed to shrink the tumor, which had a cyst attached, but the cyst ended up absorbing more fluid than the tumor, causing the tumor to shrink and appear to be smaller. I ended up with more swelling down the line, and all the swelling and damage is irreversible.
On a lighter note, in mid-December I got together with my college friends for a birthday gathering, as we are all entering that lovely new decade of life. Eleven of us were celebrating birthdays, including Ellen, Patti, Carrie and I. We went to Seasons 52 and we all had a blast. It was so much fun.
Then I was off for my last-minute Christmas shopping. I had to put some little elves to work this year (tee hee hee): some high school girls to shop for Tyler, and a few friends of mine to assist with Alyssa. Thank you Santa's Helpers...you know who you are.
Christmas was our usual tradition. We get dressed up; spend the evening with 28 of our closest cousins and aunts and uncles; eat, drink and be merry; open a few gifts; go to bed; open our gifts from Santa and each other; and then go back to another cousin's house and spend it with the same 28 people eating, drinking, and getting merry again. It sounds crazy but we do it every year. Next year we decided to spend Day 2 in our pajamas.
The kids had a great Christmas break. Sadly enough, they didn't have snow here, but they did make a trip up to Wilmot Mountain where Tyler taught his sister Alyssa how to ski. First he pushed her up the mountain, then they used the tow rope, and then the ski lift. Her first time down off the ski lift she went completely straight down -- it was not the bunny hill and she was flying. They both had a blast, and it was good for Tyler because his knee was able to withstand the pressure despite having had torn ACL surgery not long ago. Alyssa also had play dates over the break and Tyler just hung out playing games from the couch.
Alyssa and Steve also took a short trip to Michigan to see Steve's brother Mark and his son Charlie, who is Alyssa's age, and Steve's parents. They did some sledding, shopping, a museum, ate, played games and relaxed.
I was definitely ready to ring in the New Year, yet I didn't quite find the energy to stay up past 11:00, or to go out for that matter, so for the first time in a loooong time, the Gillespies stayed home and watched the countdown on TV. Maybe this will bring me a better year.
Things were going well until I got the flu/bladder infection/sepsis on Jan. 5. Whatever it was, it was nasty, and it lasted until this past weekend. You do NOT want to get this. I had night sweats, hallucinations, fatigue (I could not sleep less than 14-16 hours per day), no appetite, I couldn't focus, and all my blood work was totally off track. I'm going back tomorrow for more blood work, but today my white count is 24 and my kidney function is the worst it's ever been. I'm on two antibiotics and they're changing my meds because the illness is interfering with them. My potassium is 2.7, which is so low, so now I'm taking 15 potassium pills per day. Even more frightening, besides the hallucinations and other changes, was that I got no return phone calls from my internist and his nurse was out sick. I left daily messages. I'm debating whether to change doctors.
As of today, with my eye it's the same old crap, sadly enough. I saw the U of C eye doctor on New Year's Eve and Dr. Cohen today. My eye pressure remained low at both appointments and I am off of all glaucoma drops for two weeks. My eye is no longer bleeding and they say it looks about the same as it did three months ago, yet there may be some subtle changes in growth. The optic nerve tumor appears to be completely surrounding the nerve, and Dr. Cohen thinks it's blocking the signal from reaching the brain. When I asked why my vision is not what it was three months ago, he said, "There have been a lot of changes in your eye with the bleeding, injections, glaucoma, pressure, and it's hard to say if you'll have good days and bad days intermixed. Just know that you fought a good, long battle, and we've tried everything we could have tried up until now." Then he said, "I'll see you in a month and hopefully you'll have better days." He doesn't know what causes some days to be better than others. He had no answers at all, basically. It's just very frustrating to me and it doesn't make any sense. If I can see the TV one day, then why can't I see it the next day? The thought of going blind freaks me out, and there is nowhere to get help. And then how do you get to the help, and how do you learn things like Braille? It's just going to have to get better.
I meet with the vision rehab lady this Wednesday. She'll bring me more gadgets that she thinks I'll find helpful, for example, Dragon speech recognition software that will help me use the computer. She is trying to get other people to call me but nobody calls, and there's nobody for me to call. It's like the weirdest system. The state has no money, and if they had it, I don't think they'd give it to me anyway.
Next week I see the endocrinologist and ENT. On Feb. 1, I'm planning to have a stent put in my left kidney. It'll be a CT-guided angiogram. They'll put a wire up through to the right renal artery, and then see exactly how tight and constricted the vessel is. They say by the x-ray it looks 50-75% constricted. They can't put a balloon in, but rather they'll put in a stent to hold it open, but they'll only do that if they think it's safe. Because I'm allergic to the iodine in the CT-contrast, they'll give me 150 mg of Prednisone and some Benedryl. I'll be in a twilight. Last time they did it I still had a reaction, so I'm nervous.
Hope you're all staying healthy and warm during this chilly January. Hope your holidays were lovely. Please call -- I'd love to hear from you.
The way it works is you see the various specialties, and then all the doctors meet together and discuss your case to decide the best plan of action and medications to use, based on what's going on in other areas of your body. All eight doctors now know what's going on, and I no longer need to fill them in, which is key for me.
Not only have I found them to be knowledgeable, but at least one doctor from each specialty calls me at least once a week. They seem very concerned and willing to make changes to my present medication schedules to make things not only easier for me, but to make me feel better. I'm trying to wean off my steroids, for example, and they are working very closely at monitoring that process and how I feel.
Through my appointments, they found that I have a hypothyroid problem. They also found that my kidney artery is constricted, and are recommending surgery for that on Feb. 1, as they feel it has caused my blood pressure to increase and kidney function to decrease. They're trying to improve my digestion by giving me different enzymes for my pancreas to take when I eat, which will also give me energy because I'll actually absorb what I eat. Neurologically they're not doing anything differently.
They are saying I never should have gotten the lifetime gamma knife dose (2+ hours of brain radiation) that I got back in 2007 or 2008 because I caused myself damage to the area surrounding the brain stem. The radiation was supposed to shrink the tumor, which had a cyst attached, but the cyst ended up absorbing more fluid than the tumor, causing the tumor to shrink and appear to be smaller. I ended up with more swelling down the line, and all the swelling and damage is irreversible.
On a lighter note, in mid-December I got together with my college friends for a birthday gathering, as we are all entering that lovely new decade of life. Eleven of us were celebrating birthdays, including Ellen, Patti, Carrie and I. We went to Seasons 52 and we all had a blast. It was so much fun.
Then I was off for my last-minute Christmas shopping. I had to put some little elves to work this year (tee hee hee): some high school girls to shop for Tyler, and a few friends of mine to assist with Alyssa. Thank you Santa's Helpers...you know who you are.
Christmas was our usual tradition. We get dressed up; spend the evening with 28 of our closest cousins and aunts and uncles; eat, drink and be merry; open a few gifts; go to bed; open our gifts from Santa and each other; and then go back to another cousin's house and spend it with the same 28 people eating, drinking, and getting merry again. It sounds crazy but we do it every year. Next year we decided to spend Day 2 in our pajamas.
The kids had a great Christmas break. Sadly enough, they didn't have snow here, but they did make a trip up to Wilmot Mountain where Tyler taught his sister Alyssa how to ski. First he pushed her up the mountain, then they used the tow rope, and then the ski lift. Her first time down off the ski lift she went completely straight down -- it was not the bunny hill and she was flying. They both had a blast, and it was good for Tyler because his knee was able to withstand the pressure despite having had torn ACL surgery not long ago. Alyssa also had play dates over the break and Tyler just hung out playing games from the couch.
Alyssa and Steve also took a short trip to Michigan to see Steve's brother Mark and his son Charlie, who is Alyssa's age, and Steve's parents. They did some sledding, shopping, a museum, ate, played games and relaxed.
I was definitely ready to ring in the New Year, yet I didn't quite find the energy to stay up past 11:00, or to go out for that matter, so for the first time in a loooong time, the Gillespies stayed home and watched the countdown on TV. Maybe this will bring me a better year.
Things were going well until I got the flu/bladder infection/sepsis on Jan. 5. Whatever it was, it was nasty, and it lasted until this past weekend. You do NOT want to get this. I had night sweats, hallucinations, fatigue (I could not sleep less than 14-16 hours per day), no appetite, I couldn't focus, and all my blood work was totally off track. I'm going back tomorrow for more blood work, but today my white count is 24 and my kidney function is the worst it's ever been. I'm on two antibiotics and they're changing my meds because the illness is interfering with them. My potassium is 2.7, which is so low, so now I'm taking 15 potassium pills per day. Even more frightening, besides the hallucinations and other changes, was that I got no return phone calls from my internist and his nurse was out sick. I left daily messages. I'm debating whether to change doctors.
As of today, with my eye it's the same old crap, sadly enough. I saw the U of C eye doctor on New Year's Eve and Dr. Cohen today. My eye pressure remained low at both appointments and I am off of all glaucoma drops for two weeks. My eye is no longer bleeding and they say it looks about the same as it did three months ago, yet there may be some subtle changes in growth. The optic nerve tumor appears to be completely surrounding the nerve, and Dr. Cohen thinks it's blocking the signal from reaching the brain. When I asked why my vision is not what it was three months ago, he said, "There have been a lot of changes in your eye with the bleeding, injections, glaucoma, pressure, and it's hard to say if you'll have good days and bad days intermixed. Just know that you fought a good, long battle, and we've tried everything we could have tried up until now." Then he said, "I'll see you in a month and hopefully you'll have better days." He doesn't know what causes some days to be better than others. He had no answers at all, basically. It's just very frustrating to me and it doesn't make any sense. If I can see the TV one day, then why can't I see it the next day? The thought of going blind freaks me out, and there is nowhere to get help. And then how do you get to the help, and how do you learn things like Braille? It's just going to have to get better.
I meet with the vision rehab lady this Wednesday. She'll bring me more gadgets that she thinks I'll find helpful, for example, Dragon speech recognition software that will help me use the computer. She is trying to get other people to call me but nobody calls, and there's nobody for me to call. It's like the weirdest system. The state has no money, and if they had it, I don't think they'd give it to me anyway.
Next week I see the endocrinologist and ENT. On Feb. 1, I'm planning to have a stent put in my left kidney. It'll be a CT-guided angiogram. They'll put a wire up through to the right renal artery, and then see exactly how tight and constricted the vessel is. They say by the x-ray it looks 50-75% constricted. They can't put a balloon in, but rather they'll put in a stent to hold it open, but they'll only do that if they think it's safe. Because I'm allergic to the iodine in the CT-contrast, they'll give me 150 mg of Prednisone and some Benedryl. I'll be in a twilight. Last time they did it I still had a reaction, so I'm nervous.
Hope you're all staying healthy and warm during this chilly January. Hope your holidays were lovely. Please call -- I'd love to hear from you.
Friday, November 30, 2012
No...I did not win the Powerball. Hopefully soon my luck will change.
I hope you all had a nice Thanksgiving and are enjoying the start of our hopefully balmy winter. November brought a lot of medical dilemmas that are all quite random, yet required two hospital stays, several trips to the E.R., and countless doctor visits.
The majority of November I was unable to see anything other than be aware of light coming in from a window. Finally, the last five days, my eye is starting to rid itself of the blood and I'm starting to see shadows again, which I hope continues to improve and brings me back to my original level of vision.
Earlier this month I was diagnosed with glaucoma of my right eye, and now take eye drops and several medications to keep the pressure down. I tried a chemo called Avastin that was directly injected into the eye to keep my eye from forming new vessels, and hopefully preventing it from further bleeding. I've also had to have fluid removed from my eyeball when my pressure was too high. But I'm glad this whole eye thing is starting to resolve!! They day before yesterday I was able to see the shadows of people on the iPad during a show. That's a major improvement for me.
Additionally this month, I started running fevers and had night sweats, chills, and vague flu-like symptoms. When I went to the emergency room, I had a white blood count (WBC) of 40,000, which is extremely high (5-10,000 is normal). They treated me for a bladder infection and sepsis. I was on IV antibiotics for 5 days and oral for 5 days. 24 hours after finishing my antibiotics, I went back for repeat blood work and urine testing and my white count was 37,000 -- almost no change.
I also had an endoscopy and colonoscopy done during this hospital stay at Lutheran General. I have to say, I was happy to check this off my list, especially when I had to drink 16 glasses of Go Lightly prep to clean out the colon, and I had to call every time I got up for the bathroom because I was connected to a monitor and IV, and I couldn't see. I am never doing this again. It was the worst night. The tests themselves are easy -- it's the prep that's not. I got Propofol (Michael Jackson's sleeping aid) during the test. After sleeping only two hours and spending my night in the bathroom, it was incredible to receive the Propofol. I probably slept 40 minutes for my test and woke up feeling like I slept 8 hours and fully refreshed. No wonder he got hooked on this stuff.
My doctor said to make an appointment to see him that following Monday after Thanksgiving. Sadly enough, I couldn't wait until Monday as the Tuesday prior I started having pain in my left leg and shortness of breath. This continued to increase and sent me to the emergency room on Friday, where I was told I now have two new blood clots -- one in my left calf and one in my left groin. Hard to believe but...even with my elevated white count and swollen, warm, painful left leg, full of blood clots, they sent me home and told me to follow up with my doctor on Monday. They wrapped my leg with a compression wrap and told me to rest, relax, and elevate my leg on a pillow. Needless to say, by Monday my leg was much more swollen and painful, and when I got to my doctor's office, he sent me directly to the hospital to be admitted, which is where I spent the last six days.
Throughout the week, they have drawn about 50 tubes of blood in hopes of finding why my blood is making clots, especially when I have a disorder that causes me to bleed. In addition, they have been checking on my WBC every day and will do a bone marrow biopsy or bone scan if my white count elevates again, as I had very high counts for nearly a month that did not respond to antibiotics. They told me I could have leukemia, which is almost funny. They're still trying to find out why I am not anemic if my hemoglobin has dropped from 12.8 on 10/29 to 8.5 the last three days.
As for the bloody blood clot, by Monday, the clot was now connected to the one in my calf, and extended all the way up to my renal vein, which is near the belly button. It basically starts 4 inches above my ankle and travels all the way to the kidneys, where I had a filter placed in Hawaii to catch the blood clot should it ever break free, to prevent a pulmonary embolism (PE). They checked my abdomen and right leg for other clotting and everything was negative.
Normally they treat and remove blood clots with thrombolytic drugs, which are injected into your vein and break down the clot. They were unable to do that with me because they were afraid that as these drugs got into my system, they would also break any clots from old surgical sites and I could end up having a stroke, or my other tumors might start to bleed. So unfortunately, I will have these clots for life and the goal is to stop them from spreading past the filter. They also hope that the blood thinners will keep the pain to a minimum, decrease the swelling in the leg and make it softer, and they said I should start to develop a new venous system in that leg -- just like a tree, new branches (veins) will develop.
I've been on a Heparin drip and plan to go home tomorrow and switch over to Coumadin pills and blood thinning injections for about a week, and then drop to just the pills. Then I will have my blood drawn weekly, because I have to stay on this medication for 6 months and it's important to take only enough to make your blood thin, but not too thin that you will hemorrage.
Prior to the drip, I had a bit of a scare. To treat the blood clot with Heparin, they put a pic line in, which is an IV that goes directly to your heart. This made it easier because the nurse didn't have to stick me every 6 hours for blood. Prior to use, you need a chest x-ray to confirm placement. Once it was done, I couldn't figure out why so many hours passed, and then a doctor showed up and he said they confirmed placement of the pic line but also noticed a nodule the size of a marble, and he spent the last hour on the phone with my doctor going through my records for past nodes. They came up with nothing and thought it was a metastasis from my kidney, and ordered a CT scan. I said my prayers and I had no sleep that night, but at 10:00 a.m. the next morning they came in and said it was just a fractured rib. I think I did a happy dance in my bed!
I hope that these drugs to thin my blood don't have a negative effect on my eye and cause further bleeding. Steve has notified both my eye doctor as well as Dr. Jagar (the VHL specialist from the Univ. of Chicago). On Dec. 10, I go to meet with three other physicians from the VHL clinical center and hope they have some insight for me regarding all the problems I've been having lately.
I finally met with a legally blind facilitator for the State of Illinois Rehab Dept., who helps people like her get whatever they can from the State. She is planning to come out on Dec. 5 to start training with a basic cane and software for the computer, and she also will see if she can find some gadgets that are useful for people with low vision (e.g. color-coded sock connectors so they can be washed and stored together). Regarding getting help, she was going to put in for 20 hours per week of budgeted time for me for a personal assistant to help me in the home, check my emails, do minimal house stuff, grocery shopping, doctor appointments, etc. but we're still waiting to see if I qualify for that. Everything takes so long. It'll be 12 weeks on Dec. 7 since my eye started bleeding.
It has been wonderful that everyone has made extra efforts to see me in the hospital this month. It makes the day go faster. Alyssa and Tyler are of course stressed but seem to be getting used to it, as it hasn't let up now for months. I basically keep Alyssa busy, and that keeps her mind on happier things. Tyler is still doing very well neurologically and his doctor released him to play soccer as long as he no longer does headers, so he is once again a happy child. Steve's job is still going well and he is doing some traveling.
I hope everyone had a nice Thanksgiving. We spent it with my cousin Debbie and all my relatives. Every year everyone around the table says what they are thankful for. There were 18 of us so it took 2.5 hours this year. Also, a few months ago I'd seen a healing priest, Father Rookey, and Alyssa and I decided it would be special to say the prayer at Thanksgiving, so she led the prayer and we all passed his anointed oil around to bless each other.
As life brings us many more challenges and obstacles to overcome, we learn not to sweat the small stuff and be thankful for the big and little miracles in life.
In addition to being thankful for my family, I can't begin to thank all of my friends and their acquaintances for all their thoughts and prayers and everything. My friends and family are like my support group and they continue to give me the strength to go on.
Hope to see you all over the holidays. There are 24 shopping days left before Christmas...Ho Ho Ho!
The majority of November I was unable to see anything other than be aware of light coming in from a window. Finally, the last five days, my eye is starting to rid itself of the blood and I'm starting to see shadows again, which I hope continues to improve and brings me back to my original level of vision.
Earlier this month I was diagnosed with glaucoma of my right eye, and now take eye drops and several medications to keep the pressure down. I tried a chemo called Avastin that was directly injected into the eye to keep my eye from forming new vessels, and hopefully preventing it from further bleeding. I've also had to have fluid removed from my eyeball when my pressure was too high. But I'm glad this whole eye thing is starting to resolve!! They day before yesterday I was able to see the shadows of people on the iPad during a show. That's a major improvement for me.
Additionally this month, I started running fevers and had night sweats, chills, and vague flu-like symptoms. When I went to the emergency room, I had a white blood count (WBC) of 40,000, which is extremely high (5-10,000 is normal). They treated me for a bladder infection and sepsis. I was on IV antibiotics for 5 days and oral for 5 days. 24 hours after finishing my antibiotics, I went back for repeat blood work and urine testing and my white count was 37,000 -- almost no change.
I also had an endoscopy and colonoscopy done during this hospital stay at Lutheran General. I have to say, I was happy to check this off my list, especially when I had to drink 16 glasses of Go Lightly prep to clean out the colon, and I had to call every time I got up for the bathroom because I was connected to a monitor and IV, and I couldn't see. I am never doing this again. It was the worst night. The tests themselves are easy -- it's the prep that's not. I got Propofol (Michael Jackson's sleeping aid) during the test. After sleeping only two hours and spending my night in the bathroom, it was incredible to receive the Propofol. I probably slept 40 minutes for my test and woke up feeling like I slept 8 hours and fully refreshed. No wonder he got hooked on this stuff.
My doctor said to make an appointment to see him that following Monday after Thanksgiving. Sadly enough, I couldn't wait until Monday as the Tuesday prior I started having pain in my left leg and shortness of breath. This continued to increase and sent me to the emergency room on Friday, where I was told I now have two new blood clots -- one in my left calf and one in my left groin. Hard to believe but...even with my elevated white count and swollen, warm, painful left leg, full of blood clots, they sent me home and told me to follow up with my doctor on Monday. They wrapped my leg with a compression wrap and told me to rest, relax, and elevate my leg on a pillow. Needless to say, by Monday my leg was much more swollen and painful, and when I got to my doctor's office, he sent me directly to the hospital to be admitted, which is where I spent the last six days.
Throughout the week, they have drawn about 50 tubes of blood in hopes of finding why my blood is making clots, especially when I have a disorder that causes me to bleed. In addition, they have been checking on my WBC every day and will do a bone marrow biopsy or bone scan if my white count elevates again, as I had very high counts for nearly a month that did not respond to antibiotics. They told me I could have leukemia, which is almost funny. They're still trying to find out why I am not anemic if my hemoglobin has dropped from 12.8 on 10/29 to 8.5 the last three days.
As for the bloody blood clot, by Monday, the clot was now connected to the one in my calf, and extended all the way up to my renal vein, which is near the belly button. It basically starts 4 inches above my ankle and travels all the way to the kidneys, where I had a filter placed in Hawaii to catch the blood clot should it ever break free, to prevent a pulmonary embolism (PE). They checked my abdomen and right leg for other clotting and everything was negative.
Normally they treat and remove blood clots with thrombolytic drugs, which are injected into your vein and break down the clot. They were unable to do that with me because they were afraid that as these drugs got into my system, they would also break any clots from old surgical sites and I could end up having a stroke, or my other tumors might start to bleed. So unfortunately, I will have these clots for life and the goal is to stop them from spreading past the filter. They also hope that the blood thinners will keep the pain to a minimum, decrease the swelling in the leg and make it softer, and they said I should start to develop a new venous system in that leg -- just like a tree, new branches (veins) will develop.
I've been on a Heparin drip and plan to go home tomorrow and switch over to Coumadin pills and blood thinning injections for about a week, and then drop to just the pills. Then I will have my blood drawn weekly, because I have to stay on this medication for 6 months and it's important to take only enough to make your blood thin, but not too thin that you will hemorrage.
Prior to the drip, I had a bit of a scare. To treat the blood clot with Heparin, they put a pic line in, which is an IV that goes directly to your heart. This made it easier because the nurse didn't have to stick me every 6 hours for blood. Prior to use, you need a chest x-ray to confirm placement. Once it was done, I couldn't figure out why so many hours passed, and then a doctor showed up and he said they confirmed placement of the pic line but also noticed a nodule the size of a marble, and he spent the last hour on the phone with my doctor going through my records for past nodes. They came up with nothing and thought it was a metastasis from my kidney, and ordered a CT scan. I said my prayers and I had no sleep that night, but at 10:00 a.m. the next morning they came in and said it was just a fractured rib. I think I did a happy dance in my bed!
I hope that these drugs to thin my blood don't have a negative effect on my eye and cause further bleeding. Steve has notified both my eye doctor as well as Dr. Jagar (the VHL specialist from the Univ. of Chicago). On Dec. 10, I go to meet with three other physicians from the VHL clinical center and hope they have some insight for me regarding all the problems I've been having lately.
I finally met with a legally blind facilitator for the State of Illinois Rehab Dept., who helps people like her get whatever they can from the State. She is planning to come out on Dec. 5 to start training with a basic cane and software for the computer, and she also will see if she can find some gadgets that are useful for people with low vision (e.g. color-coded sock connectors so they can be washed and stored together). Regarding getting help, she was going to put in for 20 hours per week of budgeted time for me for a personal assistant to help me in the home, check my emails, do minimal house stuff, grocery shopping, doctor appointments, etc. but we're still waiting to see if I qualify for that. Everything takes so long. It'll be 12 weeks on Dec. 7 since my eye started bleeding.
It has been wonderful that everyone has made extra efforts to see me in the hospital this month. It makes the day go faster. Alyssa and Tyler are of course stressed but seem to be getting used to it, as it hasn't let up now for months. I basically keep Alyssa busy, and that keeps her mind on happier things. Tyler is still doing very well neurologically and his doctor released him to play soccer as long as he no longer does headers, so he is once again a happy child. Steve's job is still going well and he is doing some traveling.
I hope everyone had a nice Thanksgiving. We spent it with my cousin Debbie and all my relatives. Every year everyone around the table says what they are thankful for. There were 18 of us so it took 2.5 hours this year. Also, a few months ago I'd seen a healing priest, Father Rookey, and Alyssa and I decided it would be special to say the prayer at Thanksgiving, so she led the prayer and we all passed his anointed oil around to bless each other.
As life brings us many more challenges and obstacles to overcome, we learn not to sweat the small stuff and be thankful for the big and little miracles in life.
In addition to being thankful for my family, I can't begin to thank all of my friends and their acquaintances for all their thoughts and prayers and everything. My friends and family are like my support group and they continue to give me the strength to go on.
Hope to see you all over the holidays. There are 24 shopping days left before Christmas...Ho Ho Ho!
Friday, October 26, 2012
Hiking blind at 50...who would have guessed?
Again to summarize, without going into too much detail, this is where things stand today. None of the three options that we were considering for my eye were viable. I felt like a sitting duck and at this point I was only seeing shadows or complete whiteness. It was recommended that I have surgery and therefore underwent a vitrectomy, where two incisions are made to open the eye to clean out the gel-like fluid, but in my case it was to clean out the blood. The doctor also applied a very high-level laser to the two retinal lesions to hopefully stop them from growing and bleeding. The hope was that after my eye heals, the pressure would go down and the fluid that had accumulated near the optic nerve would be lowered, decreasing the risk of a detached retina.
I had the surgery on Oct. 9, was able to see shadows on the 10th, and since then, other than an occasional shadow here and there, have experienced complete blindness (darkness or whiteness). It has been a very scary time, especially as the days go on and the vision doesn't improve. But I guess I'm learning to adapt to it, as I guess anyone else would when you have to.
Over the past 4-5 days I've noticed an increased pain behind that eye as well as swelling in the eyelid. I went to the eye doctor today. He checked the pressure within the eye, which is normally within the normal range, yet today it was extremely high and consistent with glaucoma-like readings. He gave me two new drops to take to decrease the pressure. If the pressure doesn't return to normal levels by early next week, he wants to try an Avastin injection into the eye. At the appointment today, he was also unable to see into my eye because it was filled with blood, so he did an ultrasound to confirm the findings. If we can't resolve this blood within the next week or so, he said he would go back in to surgically take the blood out.
For me, the blindness is very disorienting because I can't hear in my left ear so I can't follow sounds, and I've had many brain surgeries, and therefore I'm unsteady on my feet. And when you combine that with vision loss, it's simply not a good picture. But I'm very optimistic that I'll see again now that I know what the problem is. If the blood goes away, I know I'll be able to at least see shadows. Even if I can only see shadows, at least I'll be able to walk around things.
Along with my eye pressure being high, I've also been running extremely high blood pressures, which I feel is compounding the bleeding issue. I'm going to see Dr. Havey, my internist, on Monday to start on another blood pressure medication. (I already take three.)
I spoke with my neurosurgeon today, Dr. Bendok at Northwestern, regarding all my brain and spine scans. He said everything for the most part was unchanged, yet two areas were of somewhat concern. One is in the balance center of the ear, where there was a new build-up of protein-like cells, which I'm worried could mean the start of a hearing loss or another tumor in my right ear. I cannot be like Helen Keller so this cannot happen. So I'm hoping to hear from my ENT that it's nothing to worry about.
The other was an area in my lumbar spine (lower back) that has changed and would cause a walking imbalance and incontinence, and he would like me to see a specialist to make sure that the issues I'm having in those areas are not caused from this tumor. I have noticed my balance is off. After my brain surgeries and not seeing, of course my balance is off.
On a new forefront and brighter note, my neighbor Suzanne and I attended a VHL conference two weeks ago. There were five families present other than myself, plus a geneticist, kidney surgeon, and the leader from the East coast that runs the VHL Alliance. It was very enlightening as they have recently opened a VHL clinical care center, which is now the fourth in the country. How lucky am I that it is here in the University of Chicago.
Basically, they have eight different specialties to make sure that no areas are overlooked, including a geneticist. I plan to make an appointment to see all the physicians over a two-day span at the beginning of November. They mentioned that you can use them as a primary or just as a second opinion. Now that I know Tyler has VHL, I need to have Alyssa checked through DNA analysis, which the geneticist can arrange. It should be interesting to see their opinions compared to that of the general doctors I have been dealing with.
Since the start of my vision loss over a month ago, I have contacted the State Department of Rehab and the Lighthouse for the Blind. I have yet to see a body and I've only received calls back twice. It's very discouraging to me that somebody with a recent diagnosis of blindness can go this long with nobody following up on you. I am a very fortunate person that I have all the support of my friends and family that I do, because in general people might not have this support and might have given up by now. Blindness is like nothing else - it's the worst thing I've experienced in my life. What do all these people do out there? Our State runs on deadlines, the first of which they've already missed. They have 60 days to put a plan into action but they have not even come up with the plan yet. The State is very poor and slow, and they don't have enough accountability.
On an lighter note, I just returned from a well-needed vacation to Steamboat Springs and Golden, CO. The first half of the trip was spent with five friends from high school who all celebrated our 50th (or did I mean 30th?) birthdays. The accommodations were lovely in our five-story mountainside town home with mountain views and a Jacuzzi to boot. We went hiking, the girls all went horseback riding, and we even soaked in the natural hot springs and had a massage. We basically ate, drank, and reconnected. I can hardly wait to see the pictures when I can see again - hopefully soon.
We then went down the mountain to see my brother Jeff, sister-in-law Cindy, and their kids Anthony, Emma, and McKenna. Alyssa came along and stayed in Golden with them while the girls went our way to Steamboat. In Golden we again went hiking and we also went to Pearl Street in Boulder, which has a lot of shops, restaurants and street performers. We also celebrated Alyssa's 10th birthday there on Oct. 24. It was good to visit and catch up. Again, I can hardly wait to see the pictures of where I've been. A big thank you to everyone: Sue, Diana, Sheila, Sheila, and the Kolinski family, for making this all possible. And another big thank you to Sheila and her mother for splurging once again. I think Ruby wanted a fourth daughter.
Tyler, since the last post, had a full week of tutoring, and then returned to school about 10 days ago. He goes in early or stays late to continue to catch up on his work. He missed a total of 9 days prior to surgery and 18 days after, so he had a lot of making up to do. So far so good. His energy is coming back slowly, his appetite is improving, and his pain has nearly subsided. It's so nice to have my Tyler back again. He still suffers no neurological deficits. We see the doctor for a follow-up in a week because he is still restricted to walking only, and has been unable to lift over 5 lbs or drive a car. Other than his short hair and incision, you would almost forget he had surgery. We still need to continue to check the other areas of his spine and his eye to look for further signs of VHL, yet his ears and abdomen appear to be okay. Now that his energy level is improving, we plan to continue his college search.
Steve has never been busier. Between taking care of Tyler, his newly blinded wife, and schlepping Alyssa around here and there, he has had very little time for himself. Work has been crazy and busy, which is a good thing, but he suffers a tremendous amount of stress. Everyone in this family handles stress differently and we are all looking for the perfect outlet. Poor Alyssa just goes with the flow of life, but she's very busy with her girl scouts, soccer, choir, and jazz and tap. She needed the Colorado break since she's been under stress, too. It was a well-needed vacation for her.
Alyssa's teacher Sherrie ("Urbie") and Suzanne started up a meal train earlier this month, which has relieved a tremendous strain from Steve and has provided healthy, delicious meals for our family. It even has my kids trying foods they never would have tried, so they are developing new tastes along the way. It has been very appreciated and helpful. It's three days per week, and the leftovers feed us most of the other days.
Does anybody local know a good cleaning lady or someone good with organizational skills? If so, please email me.
Wishing you all a spooky, spectacular Halloween before the holiday rush begins. I will keep you posted on my vision and upcoming doctor visits as per usual.
I had the surgery on Oct. 9, was able to see shadows on the 10th, and since then, other than an occasional shadow here and there, have experienced complete blindness (darkness or whiteness). It has been a very scary time, especially as the days go on and the vision doesn't improve. But I guess I'm learning to adapt to it, as I guess anyone else would when you have to.
Over the past 4-5 days I've noticed an increased pain behind that eye as well as swelling in the eyelid. I went to the eye doctor today. He checked the pressure within the eye, which is normally within the normal range, yet today it was extremely high and consistent with glaucoma-like readings. He gave me two new drops to take to decrease the pressure. If the pressure doesn't return to normal levels by early next week, he wants to try an Avastin injection into the eye. At the appointment today, he was also unable to see into my eye because it was filled with blood, so he did an ultrasound to confirm the findings. If we can't resolve this blood within the next week or so, he said he would go back in to surgically take the blood out.
For me, the blindness is very disorienting because I can't hear in my left ear so I can't follow sounds, and I've had many brain surgeries, and therefore I'm unsteady on my feet. And when you combine that with vision loss, it's simply not a good picture. But I'm very optimistic that I'll see again now that I know what the problem is. If the blood goes away, I know I'll be able to at least see shadows. Even if I can only see shadows, at least I'll be able to walk around things.
Along with my eye pressure being high, I've also been running extremely high blood pressures, which I feel is compounding the bleeding issue. I'm going to see Dr. Havey, my internist, on Monday to start on another blood pressure medication. (I already take three.)
I spoke with my neurosurgeon today, Dr. Bendok at Northwestern, regarding all my brain and spine scans. He said everything for the most part was unchanged, yet two areas were of somewhat concern. One is in the balance center of the ear, where there was a new build-up of protein-like cells, which I'm worried could mean the start of a hearing loss or another tumor in my right ear. I cannot be like Helen Keller so this cannot happen. So I'm hoping to hear from my ENT that it's nothing to worry about.
The other was an area in my lumbar spine (lower back) that has changed and would cause a walking imbalance and incontinence, and he would like me to see a specialist to make sure that the issues I'm having in those areas are not caused from this tumor. I have noticed my balance is off. After my brain surgeries and not seeing, of course my balance is off.
On a new forefront and brighter note, my neighbor Suzanne and I attended a VHL conference two weeks ago. There were five families present other than myself, plus a geneticist, kidney surgeon, and the leader from the East coast that runs the VHL Alliance. It was very enlightening as they have recently opened a VHL clinical care center, which is now the fourth in the country. How lucky am I that it is here in the University of Chicago.
Basically, they have eight different specialties to make sure that no areas are overlooked, including a geneticist. I plan to make an appointment to see all the physicians over a two-day span at the beginning of November. They mentioned that you can use them as a primary or just as a second opinion. Now that I know Tyler has VHL, I need to have Alyssa checked through DNA analysis, which the geneticist can arrange. It should be interesting to see their opinions compared to that of the general doctors I have been dealing with.
Since the start of my vision loss over a month ago, I have contacted the State Department of Rehab and the Lighthouse for the Blind. I have yet to see a body and I've only received calls back twice. It's very discouraging to me that somebody with a recent diagnosis of blindness can go this long with nobody following up on you. I am a very fortunate person that I have all the support of my friends and family that I do, because in general people might not have this support and might have given up by now. Blindness is like nothing else - it's the worst thing I've experienced in my life. What do all these people do out there? Our State runs on deadlines, the first of which they've already missed. They have 60 days to put a plan into action but they have not even come up with the plan yet. The State is very poor and slow, and they don't have enough accountability.
On an lighter note, I just returned from a well-needed vacation to Steamboat Springs and Golden, CO. The first half of the trip was spent with five friends from high school who all celebrated our 50th (or did I mean 30th?) birthdays. The accommodations were lovely in our five-story mountainside town home with mountain views and a Jacuzzi to boot. We went hiking, the girls all went horseback riding, and we even soaked in the natural hot springs and had a massage. We basically ate, drank, and reconnected. I can hardly wait to see the pictures when I can see again - hopefully soon.
We then went down the mountain to see my brother Jeff, sister-in-law Cindy, and their kids Anthony, Emma, and McKenna. Alyssa came along and stayed in Golden with them while the girls went our way to Steamboat. In Golden we again went hiking and we also went to Pearl Street in Boulder, which has a lot of shops, restaurants and street performers. We also celebrated Alyssa's 10th birthday there on Oct. 24. It was good to visit and catch up. Again, I can hardly wait to see the pictures of where I've been. A big thank you to everyone: Sue, Diana, Sheila, Sheila, and the Kolinski family, for making this all possible. And another big thank you to Sheila and her mother for splurging once again. I think Ruby wanted a fourth daughter.
Tyler, since the last post, had a full week of tutoring, and then returned to school about 10 days ago. He goes in early or stays late to continue to catch up on his work. He missed a total of 9 days prior to surgery and 18 days after, so he had a lot of making up to do. So far so good. His energy is coming back slowly, his appetite is improving, and his pain has nearly subsided. It's so nice to have my Tyler back again. He still suffers no neurological deficits. We see the doctor for a follow-up in a week because he is still restricted to walking only, and has been unable to lift over 5 lbs or drive a car. Other than his short hair and incision, you would almost forget he had surgery. We still need to continue to check the other areas of his spine and his eye to look for further signs of VHL, yet his ears and abdomen appear to be okay. Now that his energy level is improving, we plan to continue his college search.
Steve has never been busier. Between taking care of Tyler, his newly blinded wife, and schlepping Alyssa around here and there, he has had very little time for himself. Work has been crazy and busy, which is a good thing, but he suffers a tremendous amount of stress. Everyone in this family handles stress differently and we are all looking for the perfect outlet. Poor Alyssa just goes with the flow of life, but she's very busy with her girl scouts, soccer, choir, and jazz and tap. She needed the Colorado break since she's been under stress, too. It was a well-needed vacation for her.
Alyssa's teacher Sherrie ("Urbie") and Suzanne started up a meal train earlier this month, which has relieved a tremendous strain from Steve and has provided healthy, delicious meals for our family. It even has my kids trying foods they never would have tried, so they are developing new tastes along the way. It has been very appreciated and helpful. It's three days per week, and the leftovers feed us most of the other days.
Does anybody local know a good cleaning lady or someone good with organizational skills? If so, please email me.
Wishing you all a spooky, spectacular Halloween before the holiday rush begins. I will keep you posted on my vision and upcoming doctor visits as per usual.
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