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.
Wednesday, March 20, 2013
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.
Wednesday, September 26, 2012
Another day, another challenge
Without going into too much detail, I'll just give you the summary of where things stand today. Two weeks ago I had gone to the eye doctor as I had noticed my vision to have greater fogginess, and he said it looks like my retina was close to detaching and the reason for the increased fogginess was due to the fluid that the tumors are producing. The fluid is causing the retina to detach from the back of my eye. He reiterated there was nothing he can do from this end until I see the eye specialist in Grand Rapids, MI, to see if he has any ideas to approach the situation without causing further vision loss.
Little did I know, the following morning, I woke up and heard the news from our pediatrician that my son had a brain stem tumor and cyst, and my blood pressure must have significantly shot up because 10 minutes later, my house turned white. I was home alone and thought I had a stroke. I had no pain and was trying to figure out what happened to me. Thank God for the iPhone 4S with Siri that I was able to contact my neighbor Suzanne, who immediately came over to see if we could determine what happened. We called my eye doctor, who was running between surgical rooms as well as giving a presentation at Rush Hospital, and was not able to talk with him until later in the afternoon. Dr Havey, my internist, thought it could have been a bleed behind my eye to the brain, and wanted me to race down and have an MRI scan. We felt this was more eye-related and opted to see the doctor in Grand Rapids instead.
Luckily, he took me as an emergency case the following day and explained that I had a large bleed, which was causing me to not see out, but he felt that as with any bruise, it would be a matter of 2-3 weeks before the blood would re-absorb and my vision would return to normal.
Regarding his recommendation to treat the retinal detachment/increased fluid, he gave me three options. His #1 choice is systemic chemo with a drug called Avastin. He has had experience personally with this drug 10 years ago and felt that it would be beneficial for me as well. His choices #2 and #3 involved radiation therapy, one being whole eye radiation, and the other being focal radiation to the tumors, yet he feels I would get radiation damage 2-3 years down the line even though I would probably get better results initially.
So, for the past two weeks, I have been focusing on getting approved for this drug, which unfortunately is not approved by the FDA for my diagnosis. I've been denied by Medicare as well as my secondary insurance, and have had doctors write letters to the insurance company saying this is a last-resort drug treatment and I have no other option. In addition, we have submitted articles of studies that I have found related to my diagnosis where this drug has successfully been used. I should have an answer in the next 7-10 days. If denied, I will have to come up with the amount out-of-pocket or see if the manufacturer (Genentech) will give me a discounted rate or donate several doses. This drug is very pricey (e.g. $14,800 per dose), of which I need two per month.
Say your prayers and wish me luck that my appeal goes through. I hope it's a go because presently I'm nearly blind. I see very limited shadowing and have again had another bleed a week ago. My doctor has upped my blood pressure medication and tells me to rest and relax, which I'm trying to do with the increased family stresses and Tyler's health issues.
I see the oncologist tomorrow to see if I qualify to take the drug, due to my medical health and increased risk of bleeding that I have. In addition, I am running my own trial and I'm getting MRI scans of my brain, complete spine, kidneys, and abdomen. I'm also seeing the dermatologist tomorrow to evaluate my skin to see if this drug may have any effects one way or another. I thought I would get a baseline on everything as well as my eye to see if this chemo will help others with VHL down the road. Several of the articles I've found show this drug to be promising, so I'm hopeful it can help me, too.
As for my gyne situation, I need to postpone the surgery until I can be cleared medically with my increased blood pressure and possibly being on a chemo drug.
As most of you know, my son Tyler was recently diagnosed with a brain stem/cerebellum tumor and cyst. Fortunately, the surgery couldn't have gone better. We used a pediatric neurosurgeon, who has never operated on our family before, from Lutheran General Hospital. We found not only his expertise but the staff to be top notch. Tyler did so well that he was discharged on the 4th day. He no longer suffers from nausea, vomiting and dizziness, which had been constant for about a month before the surgery. He now just has post-op incisional head pain and neck pain, and headaches from mild to severe. We see the doctor Tuesday for our follow-up appointment where we'll get a back-to-school date. He has missed two weeks of school and will probably miss two more. Tutoring should start later this week.
He's actually had a lot of stress besides just brain surgery. He started the summer with mono in June, tore his left ACL, and suffered from infections and then the neurological problems. In addition, Tyler underwent surgery on his left knee to repair his torn ACL on August 16th. One way or another, he's been unable to play varsity soccer -- his passion in life. He had so looked forward to his senior year and so far but it's been a horrific start. Fortunately, upon returning home from the hospital, two of Tyler's friends surprised him with having a salt water fish tank up and running in his room to help him relax, with beautiful coral, clown fish, crabs, starfish and more.
My sister Robin flew out prior to Tyler's surgery for a week to help with Tyler as well as with myself. While Tyler was in the hospital, Steve took the night shift and Robin and I spent the full day with him. I couldn't have done it without her, especially with the vision loss these past few weeks. Thank you Robin!
Fortunately, Steve's company has been very understanding and told him to take off what he needs throughout the course of Tyler's illness. And, somebody's on his side because his sales are better than anybody else's in the company, so at least his job is going well.
We continue to count our blessings and are thankful for our friends and family, who have been incredible during the past few weeks, as well as always. I can't personally thank everyone enough for all you've done. I hope that your good Karma will be returned to you one day.
Little did I know, the following morning, I woke up and heard the news from our pediatrician that my son had a brain stem tumor and cyst, and my blood pressure must have significantly shot up because 10 minutes later, my house turned white. I was home alone and thought I had a stroke. I had no pain and was trying to figure out what happened to me. Thank God for the iPhone 4S with Siri that I was able to contact my neighbor Suzanne, who immediately came over to see if we could determine what happened. We called my eye doctor, who was running between surgical rooms as well as giving a presentation at Rush Hospital, and was not able to talk with him until later in the afternoon. Dr Havey, my internist, thought it could have been a bleed behind my eye to the brain, and wanted me to race down and have an MRI scan. We felt this was more eye-related and opted to see the doctor in Grand Rapids instead.
Luckily, he took me as an emergency case the following day and explained that I had a large bleed, which was causing me to not see out, but he felt that as with any bruise, it would be a matter of 2-3 weeks before the blood would re-absorb and my vision would return to normal.
Regarding his recommendation to treat the retinal detachment/increased fluid, he gave me three options. His #1 choice is systemic chemo with a drug called Avastin. He has had experience personally with this drug 10 years ago and felt that it would be beneficial for me as well. His choices #2 and #3 involved radiation therapy, one being whole eye radiation, and the other being focal radiation to the tumors, yet he feels I would get radiation damage 2-3 years down the line even though I would probably get better results initially.
So, for the past two weeks, I have been focusing on getting approved for this drug, which unfortunately is not approved by the FDA for my diagnosis. I've been denied by Medicare as well as my secondary insurance, and have had doctors write letters to the insurance company saying this is a last-resort drug treatment and I have no other option. In addition, we have submitted articles of studies that I have found related to my diagnosis where this drug has successfully been used. I should have an answer in the next 7-10 days. If denied, I will have to come up with the amount out-of-pocket or see if the manufacturer (Genentech) will give me a discounted rate or donate several doses. This drug is very pricey (e.g. $14,800 per dose), of which I need two per month.
Say your prayers and wish me luck that my appeal goes through. I hope it's a go because presently I'm nearly blind. I see very limited shadowing and have again had another bleed a week ago. My doctor has upped my blood pressure medication and tells me to rest and relax, which I'm trying to do with the increased family stresses and Tyler's health issues.
I see the oncologist tomorrow to see if I qualify to take the drug, due to my medical health and increased risk of bleeding that I have. In addition, I am running my own trial and I'm getting MRI scans of my brain, complete spine, kidneys, and abdomen. I'm also seeing the dermatologist tomorrow to evaluate my skin to see if this drug may have any effects one way or another. I thought I would get a baseline on everything as well as my eye to see if this chemo will help others with VHL down the road. Several of the articles I've found show this drug to be promising, so I'm hopeful it can help me, too.
As for my gyne situation, I need to postpone the surgery until I can be cleared medically with my increased blood pressure and possibly being on a chemo drug.
As most of you know, my son Tyler was recently diagnosed with a brain stem/cerebellum tumor and cyst. Fortunately, the surgery couldn't have gone better. We used a pediatric neurosurgeon, who has never operated on our family before, from Lutheran General Hospital. We found not only his expertise but the staff to be top notch. Tyler did so well that he was discharged on the 4th day. He no longer suffers from nausea, vomiting and dizziness, which had been constant for about a month before the surgery. He now just has post-op incisional head pain and neck pain, and headaches from mild to severe. We see the doctor Tuesday for our follow-up appointment where we'll get a back-to-school date. He has missed two weeks of school and will probably miss two more. Tutoring should start later this week.
He's actually had a lot of stress besides just brain surgery. He started the summer with mono in June, tore his left ACL, and suffered from infections and then the neurological problems. In addition, Tyler underwent surgery on his left knee to repair his torn ACL on August 16th. One way or another, he's been unable to play varsity soccer -- his passion in life. He had so looked forward to his senior year and so far but it's been a horrific start. Fortunately, upon returning home from the hospital, two of Tyler's friends surprised him with having a salt water fish tank up and running in his room to help him relax, with beautiful coral, clown fish, crabs, starfish and more.
My sister Robin flew out prior to Tyler's surgery for a week to help with Tyler as well as with myself. While Tyler was in the hospital, Steve took the night shift and Robin and I spent the full day with him. I couldn't have done it without her, especially with the vision loss these past few weeks. Thank you Robin!
Fortunately, Steve's company has been very understanding and told him to take off what he needs throughout the course of Tyler's illness. And, somebody's on his side because his sales are better than anybody else's in the company, so at least his job is going well.
We continue to count our blessings and are thankful for our friends and family, who have been incredible during the past few weeks, as well as always. I can't personally thank everyone enough for all you've done. I hope that your good Karma will be returned to you one day.
Sunday, July 29, 2012
Shades of gray (not the trilogy type)
You learn to take the good with the bad. I guess trying to stunt the growth of the optic nerve tumor and make my vision better caused more problems than I had anticipated, not only with my eye but throughout other areas of my body. The snowball occurrence began with my high-dose steroid use back in mid-April. It caused my kidney function to deteriorate dramatically and my creatinine to rise from 1.2 to 2.4, causing water retention and increased blood pressure.
As I decreased my steroid dosage from 80 mg to the present 15 mg, my vision has only worsened, and is worse than it was prior to the start of the drug use. My best vision was when I was on 30-40 mg of Prednisone per day. That dose is too high to take every day as it comes with many side effects, e.g. brittle bones, shakiness, inability to sleep and concentrate, diabetes, weight gain, muscle atrophy, easy bruising -- and every side effect it causes, I have, and I'm now taking oral diabetic medication.
After starting the drug, my muscles that support my uterus and pelvic organs atrophied, which caused there to be a pressure and less blood flow to my left leg, which caused a blood clot behind my left knee. I have a complete popliteal clot and I tried and failed using blood thinners because I have a blood clotting disorder, so I've been told I will probably have this clot forever and to try to remain active. If it ever should break apart, at least I have a vein filter to catch it that was installed in Maui. My leg will be swollen for the rest of my life and it will only get worse. I'll wear special stockings in the winter (too hot in the summer) to help the blood flow so the swelling doesn't get worse.
The drug used to treat the blood clot (injectable blood thinners) caused me to hemorrhage abdominally in Hawaii. Unfortunately, I am in a worse place because I was told I'll need a complete hysterectomy and ligament/bladder repair. I have a very severe prolapsed bladder and uterus that worsened with this course of steroids and requires lifting my ligaments, putting in a sling, and lifting the bladder so it will empty normally. The prolapse started after my brain stem surgery in 2009 and is now grade 4, which is as bad as it gets. My organs literally hang out of my body by about four inches, which has required me to frequent uro-gyne doctors since returning from Hawaii.
In addition, I've been to my internist three times in hopes that my blood pressure and lab work for kidney function, hemoglobin, and creatinine will improve. He thinks my blood pressure will improve as I get off the steroid because I'll be retaining less fluid.
I last saw my eye doctor about two weeks ago and he told me that he sees nothing different when he looks into my eye, but when I read the eye chart, I am not able to read two lines that I could read the last time. There might be slight changes going on in my eye that he is unable to see, but I can tell there's a change. My vision has gotten darker and more blurry, with less color and more shades of gray, although it improves somewhat through the day. I'm getting headaches all the time because my vision is changing all the time, which is aggravating. My next appointment is in another 2-3 weeks. Nobody has any ideas as to what I should do. Back to the drawing board. But, oddly enough, I noticed my vision improved when I was in higher altitudes. The day I flew to Hawaii and the day I flew home, my vision was the best it's been. Perhaps I should become a flight attendant or move to the mountains.
Until my hemoglobin returns to normal and my body goes back to baseline, the surgeon will not do the hysterectomy or any gyne surgery as she feels I'm too high of a risk. So I'm waiting for my body to get back to normal. In the meantime, I'm focusing on getting to see the guru eye doctor in Michigan and another in Philadelphia.
Also, I continue to say my prayers and have been blessed by several different healers. This past Monday I went to see a man named Father Peter Mary Rookey. The 95-year-old Priest was blinded at the age of 8. His family and parents prayed the rosary for several years daily, and one day he woke up and had the gift of sight returned. He had lost his vision as a result of a firecracker blowing up and damaging his eyes and face. From a doctor's perspective, he should not be able to see. To this day, he can read fine print (e.g. the phonebook) without the use of any reading glasses or aid. Once his vision was restored, he gained the gift of healing and has healed many people, even the blind. Lori Pritchett and I saw him this past Monday and received his blessing on our oils, candles, books, religious medals and miracle prayer, and had a semi-private three-hour visit with him. I feel blessed to have met someone so holy as he, and can only pray that I receive his healing.
I hope you're all enjoying your summer and trying to stay cool. Only 24 days until school...
As I decreased my steroid dosage from 80 mg to the present 15 mg, my vision has only worsened, and is worse than it was prior to the start of the drug use. My best vision was when I was on 30-40 mg of Prednisone per day. That dose is too high to take every day as it comes with many side effects, e.g. brittle bones, shakiness, inability to sleep and concentrate, diabetes, weight gain, muscle atrophy, easy bruising -- and every side effect it causes, I have, and I'm now taking oral diabetic medication.
After starting the drug, my muscles that support my uterus and pelvic organs atrophied, which caused there to be a pressure and less blood flow to my left leg, which caused a blood clot behind my left knee. I have a complete popliteal clot and I tried and failed using blood thinners because I have a blood clotting disorder, so I've been told I will probably have this clot forever and to try to remain active. If it ever should break apart, at least I have a vein filter to catch it that was installed in Maui. My leg will be swollen for the rest of my life and it will only get worse. I'll wear special stockings in the winter (too hot in the summer) to help the blood flow so the swelling doesn't get worse.
The drug used to treat the blood clot (injectable blood thinners) caused me to hemorrhage abdominally in Hawaii. Unfortunately, I am in a worse place because I was told I'll need a complete hysterectomy and ligament/bladder repair. I have a very severe prolapsed bladder and uterus that worsened with this course of steroids and requires lifting my ligaments, putting in a sling, and lifting the bladder so it will empty normally. The prolapse started after my brain stem surgery in 2009 and is now grade 4, which is as bad as it gets. My organs literally hang out of my body by about four inches, which has required me to frequent uro-gyne doctors since returning from Hawaii.
In addition, I've been to my internist three times in hopes that my blood pressure and lab work for kidney function, hemoglobin, and creatinine will improve. He thinks my blood pressure will improve as I get off the steroid because I'll be retaining less fluid.
I last saw my eye doctor about two weeks ago and he told me that he sees nothing different when he looks into my eye, but when I read the eye chart, I am not able to read two lines that I could read the last time. There might be slight changes going on in my eye that he is unable to see, but I can tell there's a change. My vision has gotten darker and more blurry, with less color and more shades of gray, although it improves somewhat through the day. I'm getting headaches all the time because my vision is changing all the time, which is aggravating. My next appointment is in another 2-3 weeks. Nobody has any ideas as to what I should do. Back to the drawing board. But, oddly enough, I noticed my vision improved when I was in higher altitudes. The day I flew to Hawaii and the day I flew home, my vision was the best it's been. Perhaps I should become a flight attendant or move to the mountains.
Until my hemoglobin returns to normal and my body goes back to baseline, the surgeon will not do the hysterectomy or any gyne surgery as she feels I'm too high of a risk. So I'm waiting for my body to get back to normal. In the meantime, I'm focusing on getting to see the guru eye doctor in Michigan and another in Philadelphia.
Also, I continue to say my prayers and have been blessed by several different healers. This past Monday I went to see a man named Father Peter Mary Rookey. The 95-year-old Priest was blinded at the age of 8. His family and parents prayed the rosary for several years daily, and one day he woke up and had the gift of sight returned. He had lost his vision as a result of a firecracker blowing up and damaging his eyes and face. From a doctor's perspective, he should not be able to see. To this day, he can read fine print (e.g. the phonebook) without the use of any reading glasses or aid. Once his vision was restored, he gained the gift of healing and has healed many people, even the blind. Lori Pritchett and I saw him this past Monday and received his blessing on our oils, candles, books, religious medals and miracle prayer, and had a semi-private three-hour visit with him. I feel blessed to have met someone so holy as he, and can only pray that I receive his healing.
I hope you're all enjoying your summer and trying to stay cool. Only 24 days until school...
Maui-velous!
Had a great nine days in Maui. We stayed in a place called Kehei, which is about 20 miles south of Kaanapali and/or Lahaina. We had two condos somewhat adjoining that each slept eight and were very spacious and nice, and included all the amenities of home. My brother, sister and I bonded throughout the trip and we became closer than we ever thought possible. It was also a wonderful opportunity for me to get closer to my nieces and nephews and my brother- and sister-in-law. We all got along great.
We went to a different beach every day. Everyone tried snorkeling. We saw coral reefs, eels, turtles, and even little Nemo. During our stay, we never saw a whale or dolphin, but we ran across turtles daily. Jeff and Robin actually got to hang onto a ginormous turtle's four-foot body and went for a ride on the ocean. The current was so strong. The beaches and mountainous areas are beautiful and the flowers are the brightest colors you've ever seen. Why do we live in the middle of the country?? We enjoyed many steak dinners and Malibu Rum and pineapple juice to boot.
All was going well until day five, when I felt a ripping or pulled muscle near my left old kidney incision. I thought it was nothing but it was causing a lot of pain. Additionally, I was trying to remain very active throughout the trip so that my blood clot would remain under control, and continued with the blood thinner injection twice a day. On Friday we noticed a slight bruising where I first felt the pull, but decided to go to the beach and look at it later. After we got home, my whole left side of my abdomen was now purple so we showered and set off to Maui Memorial. It was a small, 192-bed hospital set at the base of a mountain, whereupon I was admitted with complaints of shortness of breath, worse pain, and to further evaluate the bruise. I had a hemoglobin of 13 prior to my trip, and once I was admitted it went down to 8.7 before it was stabilized. Basically I was internally bleeding and on admission the hematoma was 12" x 9" in size. In order to stop the bleeding, they wrapped me like a mummy with ace wraps, which caused further shortness of breath and more pain, and they gave me some crazy pain medications that made me very loopy.
They found the reason for the hematoma was the blood thinner dose was too strong with my kidney function being so poor, in addition to my clotting disorder. They also mentioned I could not return home from Maui without having a filter surgically installed in my vein so that if the clot were to break down, I would not throw a pulmonary embolism (clot to the lung). Needless to say, I promptly went to surgery and spent 36-hours of my nine-day trip to Maui in the hospital. Sadly enough, my brother and sister lost 36-hours of their trip as well because they would not leave my bedside. Many thanks again, Robin and Jeff.
I was given some strict discharge instructions, yet I was on vacation and decided not to follow most of them after the first day or two. It was time to enjoy the trip again so we continued our adventures and on our last day had yet another brush with death. We had gone to Hana to their national park and did a four-hour, four-mile hike through uneven, rocky, muddy, volcanic stepping-stone terrain. At almost mid-point we came upon a banyan tree and then we went through a tropical rainforest made of bamboo trees. The bamboo was so dense that you could barely see through to the sky. It was really dark and so cool. We hiked through that for at least a mile with occasional openings and waterfalls. At the end of the rainforest, we crossed high-current streams that led to the ocean, which were again rocky and hard to navigate, to our final destination -- a beautiful 480' waterfall. Unfortunately, none of us read the danger sign as we all proceeded to take photos as close as we could get to the waterfall. The sign, about 100' prior, warned all hikers that avalanches may occur, causing death. And, believe it or not, after about 20 minutes of enjoying the sights, we heard the loudest thunder-like sound we've ever heard. We looked up and saw large volcanic rocks falling down the mountainside. My sister started yelling, "We're all going to die!" and my brother yelled, "Avalanche!" and all the hikers (about 30 of us) ran in different directions. Needless to say, I'll have some scars to remember that day as we all were falling as we raced to safety. I'm still getting my photos in order and will put them in my Facebook file called Hawaii.
In addition to all our adventures, my brother Jeff renewed his marital vows in a private Hawaiian ceremony. It was so beautiful. I was happy to attend this as I missed his real wedding.
We also attended a luau and visited the typical tourist places in Lahaina: banyan trees and Cheeseburgers in Paradise. It's been a long 22 years since my honeymoon when I first went to Maui and hopefully I won't have to wait so long before going back again. I did end up buying their Kona coffee. It's $18 for 7 oz. bag but it's so good. I'm trying to savor that purchase by enjoying a cup every few days. The biggest regret I have is that I didn't pursue taking my kids with me because I feel they missed such a wonderful experience, not only as a vacation but as a time to bond with their family.
We went to a different beach every day. Everyone tried snorkeling. We saw coral reefs, eels, turtles, and even little Nemo. During our stay, we never saw a whale or dolphin, but we ran across turtles daily. Jeff and Robin actually got to hang onto a ginormous turtle's four-foot body and went for a ride on the ocean. The current was so strong. The beaches and mountainous areas are beautiful and the flowers are the brightest colors you've ever seen. Why do we live in the middle of the country?? We enjoyed many steak dinners and Malibu Rum and pineapple juice to boot.
All was going well until day five, when I felt a ripping or pulled muscle near my left old kidney incision. I thought it was nothing but it was causing a lot of pain. Additionally, I was trying to remain very active throughout the trip so that my blood clot would remain under control, and continued with the blood thinner injection twice a day. On Friday we noticed a slight bruising where I first felt the pull, but decided to go to the beach and look at it later. After we got home, my whole left side of my abdomen was now purple so we showered and set off to Maui Memorial. It was a small, 192-bed hospital set at the base of a mountain, whereupon I was admitted with complaints of shortness of breath, worse pain, and to further evaluate the bruise. I had a hemoglobin of 13 prior to my trip, and once I was admitted it went down to 8.7 before it was stabilized. Basically I was internally bleeding and on admission the hematoma was 12" x 9" in size. In order to stop the bleeding, they wrapped me like a mummy with ace wraps, which caused further shortness of breath and more pain, and they gave me some crazy pain medications that made me very loopy.
They found the reason for the hematoma was the blood thinner dose was too strong with my kidney function being so poor, in addition to my clotting disorder. They also mentioned I could not return home from Maui without having a filter surgically installed in my vein so that if the clot were to break down, I would not throw a pulmonary embolism (clot to the lung). Needless to say, I promptly went to surgery and spent 36-hours of my nine-day trip to Maui in the hospital. Sadly enough, my brother and sister lost 36-hours of their trip as well because they would not leave my bedside. Many thanks again, Robin and Jeff.
I was given some strict discharge instructions, yet I was on vacation and decided not to follow most of them after the first day or two. It was time to enjoy the trip again so we continued our adventures and on our last day had yet another brush with death. We had gone to Hana to their national park and did a four-hour, four-mile hike through uneven, rocky, muddy, volcanic stepping-stone terrain. At almost mid-point we came upon a banyan tree and then we went through a tropical rainforest made of bamboo trees. The bamboo was so dense that you could barely see through to the sky. It was really dark and so cool. We hiked through that for at least a mile with occasional openings and waterfalls. At the end of the rainforest, we crossed high-current streams that led to the ocean, which were again rocky and hard to navigate, to our final destination -- a beautiful 480' waterfall. Unfortunately, none of us read the danger sign as we all proceeded to take photos as close as we could get to the waterfall. The sign, about 100' prior, warned all hikers that avalanches may occur, causing death. And, believe it or not, after about 20 minutes of enjoying the sights, we heard the loudest thunder-like sound we've ever heard. We looked up and saw large volcanic rocks falling down the mountainside. My sister started yelling, "We're all going to die!" and my brother yelled, "Avalanche!" and all the hikers (about 30 of us) ran in different directions. Needless to say, I'll have some scars to remember that day as we all were falling as we raced to safety. I'm still getting my photos in order and will put them in my Facebook file called Hawaii.
In addition to all our adventures, my brother Jeff renewed his marital vows in a private Hawaiian ceremony. It was so beautiful. I was happy to attend this as I missed his real wedding.
We also attended a luau and visited the typical tourist places in Lahaina: banyan trees and Cheeseburgers in Paradise. It's been a long 22 years since my honeymoon when I first went to Maui and hopefully I won't have to wait so long before going back again. I did end up buying their Kona coffee. It's $18 for 7 oz. bag but it's so good. I'm trying to savor that purchase by enjoying a cup every few days. The biggest regret I have is that I didn't pursue taking my kids with me because I feel they missed such a wonderful experience, not only as a vacation but as a time to bond with their family.
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