My new motto: I take the "t" out of the word "can't"

As much as this has been a tough year, I realize I still have a lot to be thankful for. My latest good news came Wednesday. Suzanne and I went to see the eye oncologist, Dr. Mieler, for my monthly visit. We took photos to monitor for changes, then proceeded with laser to both the retinal and optic nerve tumor, and then I had an eye injection of a chemo drug to prevent further vascular growth of tumors. Unfortunately, my glaucoma pressure was 28, which is somewhat high, so I had to have an additional needle inserted and fluid withdrawn (good thing for numbing drops). The best news was that in addition to my seeing some better shadows in the last 10 days to two weeks, I had an episode 2.5 weeks ago when I saw color for the first time in 15 months (since Sept. 13, 2012, to be exact). It was definitely not imagined because the colors I saw matched the colors people were actually wearing and they verified that my perception was correct. The doctor did not expect me to notice much of a change after just one treatment, and is now very hopeful that I will continue to have improved vision as we continue the monthly treatments.

I'm also thankful about finally having my hysterectomy on Nov. 22 and there were no complications...knock on wood. It was my first surgery I think ever without a glitch, which is amazing.

In addition to those two blessings, I'm thankful to everyone who helped me throughout the year - friends, family, and therapists - who have been trying to make my life easier and get me through this most difficult time. I still think God made a mistake when he picked me to be blind because I don't adapt to this disability very well.

Yesterday I saw yet another dermatologist to hopefully, finally, determine what is wrong with my skin, but I left very frustrated. I'd seen two dermatologists and two rheumatologists, had eight skin biopsies and at least 50 tubes of blood drawn. I know what I don't have, but in terms of what it is, if it's not NSF, the doctors are baffled. Definitely they ruled out a rheumatology-based diagnosis. My skin continues to worsen as well as my joints being more painful. My bone pain, fatigue, and all the other symptoms also continue to worsen. So, I was excited when I heard about this new dermatologist who is at Northwestern and comes highly recommended by the NSF Foundation specialists from Yale. However, at my appointment we found out that she is very elderly, set in her thinking, and didn't seem to have any suggestion as to what I have. She was quick to discount NSF because I walked into the office, and she said she has never seen anyone move who has NSF. In order to diagnose it, she wanted my skin to be attached down to the bone level so I would be stiff and couldn't move. She then thought it was prophyria, but I've already been diagnosed with pseudo-prophyria. She has also never heard of VHL. She recommended I see her again in two months but in the meantime I'll decide whether that would be worthwhile. When you research NSF, it says it's a gradual progression, so if I have it I want to know soon so I can try to stop it.

I have one more appointment with the glaucoma specialist next week about my pressure, and then I'm going to try not to see any more doctors for the rest of the year, if I can do that.

This month I've found so many helpful new resources. I have recently gotten involved with the Lighthouse for the Blind in Glenview and I'm taking iPhone and iPad training. I work in addition with a girl in occupational therapy there who deals with the basics of everyday cooking, organization - things that are easy for the sighted to do but are not when you can't see. There's also an entertainment lady there named Pam who puts together trips to the movies, theater, art institute, dinners and seminars for blind people, and she invited me to their Christmas party and cookie exchange next week. It's nice that I'm finally meeting people who I feel can relate to me and I can ask them questions without feeling stupid or whatever. They have lots of resources to offer that I never heard of or would have found without them.

In addition, they put together a little packet in printed format that I can read at home on a new machine that I got just last month. It's called the SARA, it looks like a mini copy machine (8x11), and on the top arm is a camera that copies the page and reads it to me, as long as the words are typewritten. I can read my mail, magazines and any book or other literature, but nothing handwritten, and newspaper columns and ads are awkward. But, overall, it's really handy. You can set it to continually scan the pages and read it all at once, which is good for books especially. It stores an unbelievable amount of memory and computer files. Everything on my computer screen I can put on my SARA and it will read it to me. It's worth like $2,000 but I got it for free from the State.

I still attend the Mundelein Center's support group for disabled people and they had a Christmas gathering last night, which I attended with my neighbor. I have become friends with my coffee buddy from the Mundelein Center, who I call Blind Judy, and her seeing eye dog Winter. She has been incredibly informative for me. She's been losing her vision since she was five years old and the bulk of it was lost in the last 10 years. She got her first seeing eye dog then, and Winter is now her third. She's taken tons of classes at Hadley School for the Blind and she gave me the information to get a catalog and sign up for their online classes. You can learn all sorts of things like Spanish or French, scrapbooking, drawing, etc., and it's all geared for blind people. You get credit for it that could potentially go toward a degree. She also hooked me up with Second Sense, which has seminars for the blind and they do a lot of things for the families as well, such as a 24-hour experience blindfolded and I SO want my family to do it. Another girl gives me podcasts and I listen to them like a book.

I recently had a most wonderful week of accomplishment. My sister Robin flew in from Pennsylvania on a buddy pass from Brian and Darlene Schick (thank you!) for nearly a week. We spent numerous hours both cleaning and organizing the kitchen, files, clothes, closets, and in addition we went grocery shopping. She made and froze seven family meals. We threw out seven garbage bags of stuff from the kitchen alone (e.g., iced tea that expired in 2009). She ordered me all new storage containers where the lids attach to the base. We donated 20-some sweaters to Goodwill and she helped me throw out clothes that I didn't know were stained. She took me to two appointments and we went out for a couple breaks as well. For six days straight, we started working between 10AM and noon and were up until 1-2AM working. It was very intense and I have to say it was probably no fun for Robin, honest to God, but she was so much appreciated and so much was accomplished in such a short time, that I can't thank her enough. Compared to the girl I paid to work here for 16 hours, Robin did that much work in one hour. Not only did she give up time with her kids, but she could have been with her husband and father-in-law who was in critical condition if she were not helping me. She never complained. Now I'm wracking my brain for an ever-so-special, thoughtful gift for Robin.

Christmas Eve and Day we'll spend with my whole family as we always do. It's a 48-hour good time. My neighbor is having a New Year's Eve party. We had our annual book club Christmas party on Tuesday with an ornament game, and I got a really good one. I also had a couple cookie exchanges, so I need to get better at blind baking. I got a lot of early and online Christmas shopping done ahead of my surgery and I'm almost done with that. Sheila's family is coming in town from Atlanta and we're all going to Alpine Valley for a couple of days of skiing and snowboarding right after New Year's.

Tyler finishes his finals on Monday and hopefully he'll keep his As and Bs. Alyssa also has As and Bs and we're trying to spend more time on consistent study habits with her. They're both looking forward to the break and Alyssa is excited for Christmas. She has a few parties herself to attend. Steve had his 51st birthday and decided to make a big change to his life and joined the Park District health club. He's been spending about 4-5 days there per week working out and he's watching his diet. Hopefully this will assist in destressing him so that he will be a little less tense, and more lean and hopefully not so mean (ha ha) for the new year. My birthday is later this month and I'll probably celebrate it with the girls next month.

I'm worried about my brother Jeff because he's really not doing very well. He has had on-and-off pain for about two months that is increasing in his back and stomach, although his tumor has not changed in size (16cm). He has also lost a great deal of weight and is getting dizzy spells and headaches, and one of his brain tumors has developed a cyst. When it changes again in size, he will most likely require surgery. So, he has been kind of down for the holidays and wasn't able to enjoy any food for Thanksgiving. I'd like him to go to the Clinical Care Center here for an evaluation. Please send your thoughts and prayers Jeff's way, and continue to pray that my eye has further miraculous improvement.

Wishing you the blessings of the season and a happy and healthy 2014!

Balancing the good, the bad, and the ugly skin

Boo! I hope this post finds you all getting into a bone-chilling mood for Halloween.

Regarding my eye, after 10-15 appointments over the past three months, I feel like I've been through a whirlwind of ups and downs. First and foremost, the worst problem is that I had found a new chemo eye injection that I was willing to try, so I went to see a retinal specialist at UofC for his opinion, and when he looked into my eye, he said "Oh my gosh, your eye has changed dramatically in the past nine months." He said my tumor is much larger and has partially detached my retina and lifted it up so that it no longer lays flat. Normally, a detached retina requires emergency surgery to repair as it works best to save vision when done quickly. Yet, due to the large size of my tumor and it pushing my retina up, I am not even a surgical candidate unless my tumor will shrink. His feeling on the chemo drug Eylea is that it would not shrink the tumor due to its size, but had I tried this when it was smaller nine months ago, I might have had better results. When I asked him what he would do if it were him, he told me to pray. I said no, really, seriously, and he said again, "I would pray. I'm going to contact several experts in the area but I really don't know if there is anything more we can do for you."

I am very disappointed because I knew my vision had been changing rapidly, and every time I questioned my usual doctor, Dr. Cohen, he stated everything looked the same and he never told me of the growth. Nothing I can do now; hindsight is 20/20.

One of the experts that the retinal specialist contacted at the University of Illinois, Dr. Mieler, I have now seen three times. He has not used the Eylea chemo on me as it is $1,800 per injection and not covered by my insurance for my diagnosis. Instead, he is using a similar chemo, which he injected into my eye. Now, I will wait four weeks and have a re-injection done on Nov. 30, and follow it with a laser treatment in hopes that it will start to shrink the tumor. He said he can't promise anything, but as long as I'm willing to try and since I have no vision to speak of, I have nothing to lose.

There is going to be a study at NIH that requires monthly trips to their facility for phase 1 trial treatments. I'm waiting for Dr. Chu to call me with more details and to decide whether or not I'm a candidate for this trial.

During this whole process, my glaucoma has gone absolutely out of control. A normal level is 8-15. A low level means your eye is soft and a high level means your eyeball is hard and can rupture. My numbers have been as low as 4 and as high as 61. 61 is one of the highest readings the doctor has ever seen and he thought I would require surgery in order to stabilize my pressure. Thankfully, we found the right cocktail of eye drops and pills and my pressure has been ranging between 18-30 lately. I am having this monitored every 1-2 weeks.

Regarding my kidney, I finally was able to get an MRI and ultrasound of my kidneys done in early August. As I was unable to receive contrast, my doctor met with a team of radiologists and a specialist and they feel that there has been little or no change in the last six months. However, I do have a change in my kidney function, which is causing them to focus on me more closely. My blood pressure has been extremely high, so they have me recording it three times per day, and the function per blood work continues to decrease. I feel I am more swollen in my hands, joints, and face as I retain more fluid due to this problem. I will have a follow-up MRI in January.

My most bothersome problem since July has been my skin and the pain associated with it. My skin had been for several years very thin and would rip like an elderly person's. This summer, many people began to notice a change in the color and leather-like appearance of my skin on my arm. I saw my dermatologist regarding this in mid-August and he, along with two other nephrologists, feels that this may now be a condition called "NSF" (nephrogenic systemic fibrosis). What does this mean? This is a condition that is very rare that is caused by receiving contrast for an MRI scan with poor kidney function. The toxins injected to help view in the MRI get trapped in the cells and cannot get out through your kidneys. Basically, you start to develop fibrin and collagen growths that are visible externally, yet they also internally damage your liver, heart, lungs, and cause them to become very sickened. My brother Steve had this condition and it caused him severe pain in his joints. When he died, he had heart issues and lung problems that they felt were related to this condition. On his autopsy, they determined that this was a significant cause of his death.

Some of the symptoms of NSF are blood clots of no apparent cause (I've had two), incredible itching or burning of the skin, bone pain especially in hips and arms, leather-like appearance of skin, and eventual restriction of movement of joints. This condition can rapidly progress or take years to progress. Whatever I had started in July on my arms and has now moved to my feet, ankles, calves, thighs, hands, back, and chest area. Thankfully, it does not go to your face. I am still waiting for a full diagnosis. I have seen two dermatologists, my internist, and the first of two rheumatologists. There is no blood test to diagnose this and there are only 400+ reported cases in the registry at Yale. If I do not have this condition, I'd like to know what I have. It's making me crazy.

Again today I returned to see my local dermatologist, who decided to take four further biopsies as he felt since August there has been a dramatic change in the appearance and spread of the skin condition. He encouraged me to see a rhumatologist ASAP to rule out any form of Lupus, as he said Lupus has a lot of similar symptoms as the NSF. Lupus is an autoimmune disorder where your body attacks itself, usually following an acute infection or illness. It definitely includes achiness, joint pain, swelling of hands, ankles and wrists, fatigue, fever of unknown origin, and skin rash that varies in appearance. This can be treated with steroids and topical medications, whereas NSF has no treatment other than a kidney transplant. Lupus can be diagnosed through a series of blood tests while NSF is diagnosed by ruling out everything else. If it's not Lupus, they think it might be NSF. Hopefully we're getting closer to an answer. Dr. Lahti prescribed me a few new cocktails to take for anti-itching because I felt I was going to lose my mind from that.

I still use my cane to navigate mostly through my home and at some local stores, yet I require much more training in this area. I have gotten lost walking from my front yard to my back yard with the cane. When in an open area, it is hard to tell where you are, and I nearly walked into a road once but was stopped by a tree branch in the face. It is very scary to know how easily I can get lost. It takes a lot of focus and concentration and counting of steps so I know about how far I am away from my starting point.

Regarding the mysteriously box from the State, I finally received it the first week in October and, sadly enough, it contained a machine that is no longer useful to me as my vision has changed so significantly for the worse. Thankfully, I am expecting a delivery in the next several weeks of a machine that will take a picture of any printed material I put underneath it and then it will have a Siri-like voice read it to me. I can't wait to get it. I'm so excited.

So what does my next month hold? More trips to the eye doctor, skin doctor, and round two of repairing my prolapse. I'm scheduled on Nov. 22 for a hysterectomy at Lutheran General Hospital with a one-night hospital stay. Hopefully this time there won't be a problem.

On the bright side, my daughter Alyssa turns 11 tomorrow, although in her mind she's already a teenager. We're postponing her birthday party as she's had a rough couple of months. She broke her right arm six weeks ago rollerblading and broke her left arm nine days ago playing soccer. At least she kicked that winning goal before she went down. She's been a good sport. Whoever thought there would be such a selection of colors to choose from -- she's had a bright orange cast and now a pale blue cast. Otherwise, her school year is going well. She doesn't miss a beat with her Girl Scouts, tap dancing, and travel soccer. Alyssa had a lot of problems with me being blind and we've had lots of conversations and many tears have been shed, but the outcome I feel was a good one. She broke down and told me she never really meant to hurt my feelings and how much she loves me, and how she's going to try so hard to help me do things. Since then, she started making me coffee that she brings to my bed on the weekends and sometimes even before school. My tears of sadness turned to tears of joy when I realized she really does love me.

Things have been quieter around the house. Even though my children are seven years apart, there was always laughing or bickering going on at all times. Tyler has been off to college since mid-August at UW-Whitewater with his major remaining undecided. He loves school and has been studying hard, and as of mid-terms he had 2 As and 3 Bs. I'm starting to think that brain surgery really did something good for him. Ha ha. He plans to come home this weekend as he wants to surprise his sister and take her to Great America (not looking so good as of now due to our unfortunate weather forecast being cloudy and a high of mid-40s; they may need to pick a different outing). We attended the parent weekend at his school as a family several weekends ago and really enjoyed our day. Alyssa hung out with the dance team and got to perform at the football game halftime with the pom pom team. We went to half of a soccer game as well, and then to the local pub to eat. We offered to hang at the dorm but the boys didn't seem to want anything to do with that. We were quite surprised they actually vacuumed that morning, but nobody wanted to take out the garbage. How hard can it be to throw a bag down the chute? Hopefully Tyler will grow up a lot this year. I know he is already doing his laundry but that's only because he's run out of his clothes twice. He plays on an intramural soccer team and practices with the club. He plans to try out next year for the team. This year they only took two freshman so next year he'll have a better chance. I'm just glad he's happy. He appears so, which makes me a very happy mom.

Steve's been traveling a bit more with business and trade shows. He still manages to get Alyssa to her soccer games and practices, pay the bills, and keep up on the house. We're trying to work together to be more aware of the stress we each feel, because he is under constant stress to do it all for the family and doesn't get a break, and he feels responsible financially. He just feels like he has to keep it all together. I only have to be responsible for me, even though my life is bad. I rely on other people for things I need to do. So, we're trying to be more thoughtful and show more appreciation to each other and offer a word of thanks more often. It all sounds so easy on paper.

My family was here this past Sunday and they thought Steve appeared to be trying really hard to be a kinder person. He picked up our food and was much more outgoing and everything. They came to celebrate Alyssa's birthday and to help me out for the day, although there was little time. The good part was, by them coming here to my home, I think they realized by looking around the house how much help I could use. They saw paperwork that needs to get filed and I showed them my closet and how I have begun to organize it, and everyone again committed to wanting to come out and help again. My Aunt Winnie brought homemade food for our upcoming weekend with Tyler and Debbie brought me a bottle of holy water from the Vatican blessed by the new Pope. However, I accidentally drank a third of it thinking it was just a water bottle. Nooo! Now I'm blessed inside and out, I guess. She also got me a glass jar of water for health, which came from the holy land where sightings of the Virgin Mary took place, I think.

Besides all my medical fiascoes, I always manage to find time for fun. I went out with college friends including DiTy, Missy, Lori, Mindy, Carrie, Nancy, Darlene, Mary Jo, my Brookhaven neighbors, the two Sheilas and Sandy, and several others. I even arranged for a long weekend in Ann Arbor, MI. Suzanne was thoughtful enough to offer up her time for a whole weekend to attend the VHL conference, and when we weren't doing conference stuff we were out having fun. It was nice to meet some new people there as well as learn a lot of new information and treatment changes in the many affected areas of my disease. It seems everything I've done has changed now.

I have recently connected with a small group of visually impaired-to-blind women. It has been nice to have someone to talk to that can relate to what I've been going through. In addition, I joined a support group for disabled people in our area, yet most of these people have spinal cord injury or stroke paralysis. I have also met three other visually impaired people through the Center for Independent Living and have found it very helpful to talk with them.

As you well know, my biggest life saver has been Suzanne with her driving me to and from all my doctor appointments, etc., etc. I swear she's like an angel. Some days I even refer to her as Dr. Baumruk as she researches everything following my appointments. Who could ask for a better friend? She's even learning how to navigate the iPhone and iPad for the visually impaired for me. We truly spend a lot of time together. I wish we had more time to spend doing fun things instead of always going to a doctor.

Much thanks to my friend Sheila in Atlanta who spends many hours on the phone typing and editing my blog, and you know I have the gift of gab so it takes a lot of tweaking. I truly am lucky to be blessed by so many good friends.

This Friday I'm off to another fiasco for happy hour and Thai food with three blind women and a dog, which is so funny because we can't see each other or the menu. Cheers!

So far this summer has been very good to me.

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...

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.

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.

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.

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.