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!
Friday, November 30, 2012
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.
Friday, June 22, 2012
Maui...wow me with vision!
Hopefully everyone is enjoying summer. It seems like everyone is running around like crazy since school got out. At least we've had great weather. There have been a lot of celebrations like graduations, dance recitals, soccer tournaments and camps to keep us all busy.
Today is Day 60 since I've started the crazy cycle of high-dose steroids. As for now I'm on a maintenance dose of 30mg per day for at least another week or so, and will gradually taper down. Unfortunately, I haven't found it to be the wonder drug I once hoped it would be, yet I am optimistic that it can still work because the doctors in Philadelphia said that it often takes 1.5 to 2 months before you see results when there is a lot of swelling and fluid near the optic nerve.
On the other hand, I did have a miraculous(?) profound change in my vision back on May 23rd. It lasted for three days. Basically, I could see almost perfectly, as if a straight line was drawn through my seeing eye and my whole left side had the ability to see color, and everything was much more defined and clear like it had been 2.5 years ago. I could even see the fine hairs on my arms. The right side of vision remained blurry with cloudy, muted color. I believe this change was a gift from my mother. The story behind this is that I was purchasing a cross for my Pandora bracelet on May 22nd. As I purchased this, I smelled the scent of my mother. Periodically through the rest of the day, the scent came to me, yet nobody else could smell it. When I went to bed that night, the scent got stronger so I decided to ask my mom for her help in healing and to stay close to me through this medical dilemma. On awakening, again I had the smell and I was able to see as described above. I called my sister and she said "Oh shut up, no way. Today is mom's 13th anniversary of her passing." I on the other hand was unaware of that being the day because my calendar had been so filled with the dosage and recordings of my medical information that I didn't even see the date on the calendar, let alone remember it.
I saw the doctor two days later, while my vision was still good, and I was able to see better on the eye chart by two lines. He could not explain this and he could see no change visibly or through photos. That was Day 30 of this drug. On day four, as profoundly as the change occurred, it went away. I woke up and the window of vision was gone. Several weeks later, the doctor decided the drug was not effective and had me taken rapidly down over a week from 40mg to 10mg, and my vision became worse than ever. The other reason he decided to take me off this medication was because my kidney was stressed. I gained about 10 lbs in fluid and my kidneys could not accommodate the extra water.
I did leave multiple messages for the doctors out in Philly and they told me the reason for the dramatic change was because I tapered too quickly, and to taper over several weeks instead of over several days, so now I'm back up to 30mg.
Periodically, I do notice that my vision improves, especially in the late afternoon/evening, and they think this is due to the drugs peaking, so I'm playing around with when I take the pill.
After that miraculous change, I was looking for answers as to why this could have happened and went to an intuitive/healer, a hands-on healer, and additionally was blessed over the phone by Peter Rookey, who had been blind himself. He became a priest after praying and got the gift of sight, and then he gained the ability to heal others. He has healed countless blind people. I plan to go see him personally for a blessing but he is 92-years-old and his schedule is quite busy. He's about 1.5 hours south of me in Olympia Fields.
I feel that my life is changing for the better as countless positive events keep occurring. Steve got a job, all my other medical issues (brain, kidney, spine, skin) are stable, I traveled to Atlanta, and now I'm preparing to take another well-needed trip, again without my husband and children. My brother's and sister's families had planned a trip to Maui and Oahu 3-4 months ago after my brother Jeff was told his life could be drastically shortened due to an inoperable brain lesion that appeared to be growing rapidly. After much discussion, my brother and sister decided to take a family-trip-of-a-lifetime. My family was invited but Steve was unemployed at the time, so we declined. My sister-in-law arranged to have their marital vows renewed and a photographer on hand in case this was their last family trip. My brother and sister continued to call me weekly, begging me to join them, yet financially I felt we were not in a place to do so. But as time grew closer, and my vision has gone through such dramatic change, Steve decided to use his airline miles (which we've had for 15 years through American but had been unable to use) and I am now booked to join them for 8 days of fun and sun in Maui. Yippee Skippee!
In the meantime, Jeff had waited 6-8 weeks to see a world-renown neurosurgeon. The wait was very difficult because he was symptomatic (dizzy, headache, nausea). He got good and bad news from the neurosurgeon: rather than a brain lesion, it was scar tissue. On the flip side, the reason for feeling ill is that he has another brain tumor that he'll have to deal with, but this one is in a better location. So instead of making this the last family trip, we are going to celebrate our first brother/sister trip together.
Whoever said 50 could be bad? So far this year has brought me a lot of happiness.
Steve and Tyler recently traveled for 5 days to Kansas City for a regional soccer tournament. I thought it was nice to give back to Steve after what he did for me. Yet, the trip turned out a bit more disastrous than planned. After 2 minutes of game time, Tyler collided with another boy and his leg kept giving out, so they would not let him resume play for the rest of the tournament. Upon returning home and having an MRI, we found he has a complete torn ACL. He will start therapy today to strengthen his leg, and then we need to decide if he'll have surgery in a month or play high school soccer with a brace. If he plays, there's a 5-10% chance that he could do more damage, so we may opt for surgery in a month instead. Poor Tyler. Last year the elbow, this year the ACL.
Alyssa and I stayed home and organized the house. She's been to VBS camp and a 1-week theater camp. As for me, I've been busy preparing for my trip and catching up with old college friends, like Jeryl, Patti, DiTy, Mindy (my old college roommate who I've not talked with for 20 years; it was like no time had passed) doing lunch and shopping.
Maui, here I come! Keep your prayers coming for my return of vision, as I continue to say my own daily. And throw in an extra prayer for Steve that he survives my travels and being home alone with the kids. Can't wait to catch up after I return on July 4th from my trip.
Today is Day 60 since I've started the crazy cycle of high-dose steroids. As for now I'm on a maintenance dose of 30mg per day for at least another week or so, and will gradually taper down. Unfortunately, I haven't found it to be the wonder drug I once hoped it would be, yet I am optimistic that it can still work because the doctors in Philadelphia said that it often takes 1.5 to 2 months before you see results when there is a lot of swelling and fluid near the optic nerve.
On the other hand, I did have a miraculous(?) profound change in my vision back on May 23rd. It lasted for three days. Basically, I could see almost perfectly, as if a straight line was drawn through my seeing eye and my whole left side had the ability to see color, and everything was much more defined and clear like it had been 2.5 years ago. I could even see the fine hairs on my arms. The right side of vision remained blurry with cloudy, muted color. I believe this change was a gift from my mother. The story behind this is that I was purchasing a cross for my Pandora bracelet on May 22nd. As I purchased this, I smelled the scent of my mother. Periodically through the rest of the day, the scent came to me, yet nobody else could smell it. When I went to bed that night, the scent got stronger so I decided to ask my mom for her help in healing and to stay close to me through this medical dilemma. On awakening, again I had the smell and I was able to see as described above. I called my sister and she said "Oh shut up, no way. Today is mom's 13th anniversary of her passing." I on the other hand was unaware of that being the day because my calendar had been so filled with the dosage and recordings of my medical information that I didn't even see the date on the calendar, let alone remember it.
I saw the doctor two days later, while my vision was still good, and I was able to see better on the eye chart by two lines. He could not explain this and he could see no change visibly or through photos. That was Day 30 of this drug. On day four, as profoundly as the change occurred, it went away. I woke up and the window of vision was gone. Several weeks later, the doctor decided the drug was not effective and had me taken rapidly down over a week from 40mg to 10mg, and my vision became worse than ever. The other reason he decided to take me off this medication was because my kidney was stressed. I gained about 10 lbs in fluid and my kidneys could not accommodate the extra water.
I did leave multiple messages for the doctors out in Philly and they told me the reason for the dramatic change was because I tapered too quickly, and to taper over several weeks instead of over several days, so now I'm back up to 30mg.
Periodically, I do notice that my vision improves, especially in the late afternoon/evening, and they think this is due to the drugs peaking, so I'm playing around with when I take the pill.
After that miraculous change, I was looking for answers as to why this could have happened and went to an intuitive/healer, a hands-on healer, and additionally was blessed over the phone by Peter Rookey, who had been blind himself. He became a priest after praying and got the gift of sight, and then he gained the ability to heal others. He has healed countless blind people. I plan to go see him personally for a blessing but he is 92-years-old and his schedule is quite busy. He's about 1.5 hours south of me in Olympia Fields.
I feel that my life is changing for the better as countless positive events keep occurring. Steve got a job, all my other medical issues (brain, kidney, spine, skin) are stable, I traveled to Atlanta, and now I'm preparing to take another well-needed trip, again without my husband and children. My brother's and sister's families had planned a trip to Maui and Oahu 3-4 months ago after my brother Jeff was told his life could be drastically shortened due to an inoperable brain lesion that appeared to be growing rapidly. After much discussion, my brother and sister decided to take a family-trip-of-a-lifetime. My family was invited but Steve was unemployed at the time, so we declined. My sister-in-law arranged to have their marital vows renewed and a photographer on hand in case this was their last family trip. My brother and sister continued to call me weekly, begging me to join them, yet financially I felt we were not in a place to do so. But as time grew closer, and my vision has gone through such dramatic change, Steve decided to use his airline miles (which we've had for 15 years through American but had been unable to use) and I am now booked to join them for 8 days of fun and sun in Maui. Yippee Skippee!
In the meantime, Jeff had waited 6-8 weeks to see a world-renown neurosurgeon. The wait was very difficult because he was symptomatic (dizzy, headache, nausea). He got good and bad news from the neurosurgeon: rather than a brain lesion, it was scar tissue. On the flip side, the reason for feeling ill is that he has another brain tumor that he'll have to deal with, but this one is in a better location. So instead of making this the last family trip, we are going to celebrate our first brother/sister trip together.
Whoever said 50 could be bad? So far this year has brought me a lot of happiness.
Steve and Tyler recently traveled for 5 days to Kansas City for a regional soccer tournament. I thought it was nice to give back to Steve after what he did for me. Yet, the trip turned out a bit more disastrous than planned. After 2 minutes of game time, Tyler collided with another boy and his leg kept giving out, so they would not let him resume play for the rest of the tournament. Upon returning home and having an MRI, we found he has a complete torn ACL. He will start therapy today to strengthen his leg, and then we need to decide if he'll have surgery in a month or play high school soccer with a brace. If he plays, there's a 5-10% chance that he could do more damage, so we may opt for surgery in a month instead. Poor Tyler. Last year the elbow, this year the ACL.
Alyssa and I stayed home and organized the house. She's been to VBS camp and a 1-week theater camp. As for me, I've been busy preparing for my trip and catching up with old college friends, like Jeryl, Patti, DiTy, Mindy (my old college roommate who I've not talked with for 20 years; it was like no time had passed) doing lunch and shopping.
Maui, here I come! Keep your prayers coming for my return of vision, as I continue to say my own daily. And throw in an extra prayer for Steve that he survives my travels and being home alone with the kids. Can't wait to catch up after I return on July 4th from my trip.
Wednesday, May 16, 2012
"Looking" for a miracle
Getting to and from Atlanta was uneventful, other than a four-hour delay on the tarmac coming home. The altitude did not seem to have any effect on the eye. What a great long weekend I got to spend with my high school friend Sheila and her family (Barry, Austin and Devin). We jam-packed everything we could into the short three days. We saw a movie (The Lucky One), went on a 90-minute electric car tour of Atlanta showing the city where Gone With the Wind originated, went in the CNN building, and walked through Centennial Olympic Park. We did a tour of the Coke Museum where we sampled Cokes from all over the world and obtained a sugar rush, and realized we were famished and needed food, so we stopped at Bahama Breeze for dinner and enjoyed some outdoor Jamaican music and food on the patio. The next day we saw Sheila's sister and her son, and then went to the Georgia Aquarium. While we were enjoying the fish and a dolphin show, Barry was preparing for an evening happy hour/party at the house. I got to meet a lot of wonderful neighbors and even got a hands-on healing by her energy-healing neighbor Carol. What a great treat to get away without the kids and with no worries. Sheila's been waiting for 20 years for me to come out there and so she bought me a ticket. The kids loved receiving miniature bottles of Coke compliments of the Kennedy-Luppowitz family as well as the tee-shirt and sweatshirt.
After returning home, I had several doctor's appointments. Today is day 23 of a high-dose Prednisone. Unfortunately, according to the photos I've been taking and what subjective vision I see, there is no significant improvement, if any, but I do see changes. I feel like there is a wall of pebbles on the right side of my eye. I return to the doctor this Friday for further photos and evaluation.
I finally spoke with the doctors in Philly, who have used this high-dose steroid method before, yet it had never been used for VHL or an optic nerve tumor. They were generally using it for inflammation and fluid in the eye. They would not give me any percentages of whether or not this would work, as they said every case is individualized. They did tell me, in my situation, it appears that the damage I'm having that is changing my vision so rapidly is due to the fluid that the tumor has produced, as well as swelling. That's why I describe my vision as like being under water, because I'm looking through a layer of murky fluid. When I asked if they can aspirate the fluid out, they said no because the fluid is within the cells, and it would damage the cells, but to be patient because my problem takes longer than 2-3 weeks to repair. It could take up to two months, in fact. My local doctor wanted me to fly out so they can visually see my eye, but they felt there was no need since he's sending them weekly photos, and they will see me if this treatment doesn't work. As for anything else in the works, they know of nothing within our country or elsewhere.
So, this is where all of you come in. I need to be the next miracle and everybody please say your prayers that this will happen.
Although my eye has changed, my brain tumors are stable. I just had an MRI on my abdomen and pelvis on Thursday, which also showed no change in any pancreas cysts or kidney cancer. Woo hoo! Thank God, because I put the idea of starting the search for a live kidney transplant on hold while I've been dealing with the eye issues. If this eye tumor would just stop growing and producing fluid, maybe I can get a few more years and technology will advance.
Speaking of technology, I now have an iPhone 4G with Siri -- a new friend. It has voice recognition, which is cool, and it can look things up for me.
This past weekend I was lucky enough to go to the Genessee Theatre to see SafetySuit and Daughtry for a concert compliments of my sorority sisters, Patti and Nancy. We had awesome seats and even got to go on SafetySuit's touring bus and hang out with the band. We took some photos, got a signed CD, and had lots of laughs with DiTy, Nancy, Alyssa, Patti, and Katie. (Alyssa is married to the manager of SafetySuit.) We started the evening at the Gillespie house for cocktails and appetizers.
Hope you all had a great and lovely Mother's Day. This was actually one of my better ones. My kids chose not to bicker, which was amazing. We made a day of fun, playing games in the backyard and hanging out as a family. We ordered a BBQ grill as my gift. Alyssa made the most beautiful card that made me want to cry. The sweetest part says, "Even though my mom can't do things that other mothers can, I will always love her." It was just such a good day.
We started our countdown for the end of school. Only 12 more days of freedom until the kids are out. Yikes! Wish me luck for Friday's eye appointment.
After returning home, I had several doctor's appointments. Today is day 23 of a high-dose Prednisone. Unfortunately, according to the photos I've been taking and what subjective vision I see, there is no significant improvement, if any, but I do see changes. I feel like there is a wall of pebbles on the right side of my eye. I return to the doctor this Friday for further photos and evaluation.
I finally spoke with the doctors in Philly, who have used this high-dose steroid method before, yet it had never been used for VHL or an optic nerve tumor. They were generally using it for inflammation and fluid in the eye. They would not give me any percentages of whether or not this would work, as they said every case is individualized. They did tell me, in my situation, it appears that the damage I'm having that is changing my vision so rapidly is due to the fluid that the tumor has produced, as well as swelling. That's why I describe my vision as like being under water, because I'm looking through a layer of murky fluid. When I asked if they can aspirate the fluid out, they said no because the fluid is within the cells, and it would damage the cells, but to be patient because my problem takes longer than 2-3 weeks to repair. It could take up to two months, in fact. My local doctor wanted me to fly out so they can visually see my eye, but they felt there was no need since he's sending them weekly photos, and they will see me if this treatment doesn't work. As for anything else in the works, they know of nothing within our country or elsewhere.
So, this is where all of you come in. I need to be the next miracle and everybody please say your prayers that this will happen.
Although my eye has changed, my brain tumors are stable. I just had an MRI on my abdomen and pelvis on Thursday, which also showed no change in any pancreas cysts or kidney cancer. Woo hoo! Thank God, because I put the idea of starting the search for a live kidney transplant on hold while I've been dealing with the eye issues. If this eye tumor would just stop growing and producing fluid, maybe I can get a few more years and technology will advance.
Speaking of technology, I now have an iPhone 4G with Siri -- a new friend. It has voice recognition, which is cool, and it can look things up for me.
This past weekend I was lucky enough to go to the Genessee Theatre to see SafetySuit and Daughtry for a concert compliments of my sorority sisters, Patti and Nancy. We had awesome seats and even got to go on SafetySuit's touring bus and hang out with the band. We took some photos, got a signed CD, and had lots of laughs with DiTy, Nancy, Alyssa, Patti, and Katie. (Alyssa is married to the manager of SafetySuit.) We started the evening at the Gillespie house for cocktails and appetizers.
Hope you all had a great and lovely Mother's Day. This was actually one of my better ones. My kids chose not to bicker, which was amazing. We made a day of fun, playing games in the backyard and hanging out as a family. We ordered a BBQ grill as my gift. Alyssa made the most beautiful card that made me want to cry. The sweetest part says, "Even though my mom can't do things that other mothers can, I will always love her." It was just such a good day.
We started our countdown for the end of school. Only 12 more days of freedom until the kids are out. Yikes! Wish me luck for Friday's eye appointment.
Wednesday, May 2, 2012
Toughing out another week
After being discharged from Northwestern on Friday, I accompanied Alyssa to a Brownie campout at Camp Timberlee in Wisconsin on Saturday! It sounds like a crazy thing to do, but it was really important to Alyssa and we made some fun memories together. Other than the cold (30's) and rain, we all had a good time. However, I feel like I am still in recovery mode from that...
Today I had photos taken of my eye to see whether I was having any positive or negative results from the Prednisone drug. Apparently, I posed well because the technician said he got some great photos and he spent over an hour taking them! After viewing the photos, the doctor called me this evening and said he feels that my eye looks the same or maybe even a little better. He sees blood in the area, as well as a lot of inflammation. He is not concerned that my vision seems blurrier to me right now. He feels all the changes and flashing lights just means that the drug is having a shocking effect on my eye. Hopefully, this will improve as the blood dissipates and the swelling goes down. Presently, I take 80 mg./day of Prednisone. This is much lower than the 1000 mg I had in the hospital, yet it is making me feel very different, i.e. restless, interrupted sleep, nervous energy & sweaty. The eye doctor is not worried about the short-term effects this will have on my body because he is more interested in saving my eye. On the other hand, my internist is concerned with this high dose and feels it is causing kidney damage and putting stress on my body - my blood pressure is high and my blood sugars are high. My kidney function labs are really bad as well. For now, I am going to take this drug week to week and will follow up with both my eye doctor and medical doctor next Tuesday and Wednesday re: further plans.
Because the doctors do not believe it is dangerous for me to fly, I am leaving for Atlanta tomorrow as scheduled to visit my friend, Sheila. We will just play it by ear regarding our activities and do as much as my body can tolerate. Hopefully, I will feel good. I'd love to see where the Olympics were held. I am very excited to get away, but am not looking forward to the heat. It is supposed to be VERY hot there - about 88-degrees!
Today I had photos taken of my eye to see whether I was having any positive or negative results from the Prednisone drug. Apparently, I posed well because the technician said he got some great photos and he spent over an hour taking them! After viewing the photos, the doctor called me this evening and said he feels that my eye looks the same or maybe even a little better. He sees blood in the area, as well as a lot of inflammation. He is not concerned that my vision seems blurrier to me right now. He feels all the changes and flashing lights just means that the drug is having a shocking effect on my eye. Hopefully, this will improve as the blood dissipates and the swelling goes down. Presently, I take 80 mg./day of Prednisone. This is much lower than the 1000 mg I had in the hospital, yet it is making me feel very different, i.e. restless, interrupted sleep, nervous energy & sweaty. The eye doctor is not worried about the short-term effects this will have on my body because he is more interested in saving my eye. On the other hand, my internist is concerned with this high dose and feels it is causing kidney damage and putting stress on my body - my blood pressure is high and my blood sugars are high. My kidney function labs are really bad as well. For now, I am going to take this drug week to week and will follow up with both my eye doctor and medical doctor next Tuesday and Wednesday re: further plans.
Because the doctors do not believe it is dangerous for me to fly, I am leaving for Atlanta tomorrow as scheduled to visit my friend, Sheila. We will just play it by ear regarding our activities and do as much as my body can tolerate. Hopefully, I will feel good. I'd love to see where the Olympics were held. I am very excited to get away, but am not looking forward to the heat. It is supposed to be VERY hot there - about 88-degrees!
Thursday, April 26, 2012
Bring on the Steroids!
Last week, I got a call from the guru of optice nerve tumors from Grand Rapids, Michigan (Dr. Aaberg). He is very knowledgeable about all of the possible optic nerve treatments and know all of the key doctors working in this area of expertise. He had little to offer me other than IV Avastin, which is a systemic chemo drug. He has only used this treatment one time on a 15-year-old VHL girl ten years ago for a two-year course. It eventually stopped her tumor from growing but never shrank it. He told me at the present time there are no new chemo agents or clinical trials available for my optic nerve tumor. He also told me that there are only 10-15 people like me in the country right now seeking treatment for this VHL type tumor. How did I get so lucky? I talked to this doctor for over an hour. He was already aware of who I was and was very happy to talk to me. I asked him about the gamma knife, radiation, or anything else that could possibly shrink my tumor without vision loss. He mentioned one other type of heat treatment (diathermy), but the patient who received it went completely blind in that eye (his other eye was unaffected). Then over the course of the next six months, his vision returned to where it was pre-treatment, but the good thing is that the tumor died. The risk for me would be complete blindness and not knowing if vision would be restored back to where it is now and/or if the tumor would die completely. He feels that would be pretty risky for me, but wanted me to be aware of it. I told him what Dr. Cohen suggested (the heavy course of steroids) and he thought that was a good option, but he has not used it before. He explained in further depth why I am seeing the way that I am. He said that as the tumor grows, not only does it apply pressure on the nerve sending signals to my brain, but it leaks an exudate (fluid) that causes the area to be inflamed. So the thought behind the high-dose steroids is that you can shock that area to reduce swelling and maybe the fluid would get absorbed. Then perhaps the vision would become more clear. I told him I would call my internist right away to make a decision quickly and he agreed. He said he'd be happy to see me any time, whether I wanted treatment through him or not.
The following day (Friday), I went to see Dr. Havey for medical clearance and to get his opinion on how the high-dose steroids or IV chemo would affect my overall health considering all of my issues. He said I should do the steroids first to reduce the swelling, and see how that goes before moving to chemo. He felt that I could handle the steroids just fine, but should receive the drug in the hospital so I could be closely monitored, as a high dose of steroids can cause high blood pressure, heart attack or hyperglycemia. He said he would admit me as soon as I chose a date and I did all the pre-op work while I was there.
I considered putting it off for a couple of weeks due to insurance issues and scheduling conflicts. However, I decided my health was too important and I was losing sleep worrying about continuing vision loss that I might never get back. So, on Tuesday I became a patient once again at Northwestern. They started the IV and are giving me 1000mg of Prednisone a day. So far, my blood pressure is a little high but stable. I have experience bad headaches and last night my blood sugar was really high (389), so I am now receiving insulin. Today it is under control.
The plan is to get another dose tomorrow and follow my blood sugars throughout the day. Then they ordered me a glucose monitor for home and I will track it for the next month. I will continue to take oral Prednisone at a lower dose (80 mg/day) at home for another four weeks. This is still a rather high dose, as normally I take 6 mg a day.
Hopefully on Saturday I will still be able to go to Camp Timberlee in Wisconsin with Alyssa and her Brownie troop. Keep me in your prayers and I will keep you posted!
The following day (Friday), I went to see Dr. Havey for medical clearance and to get his opinion on how the high-dose steroids or IV chemo would affect my overall health considering all of my issues. He said I should do the steroids first to reduce the swelling, and see how that goes before moving to chemo. He felt that I could handle the steroids just fine, but should receive the drug in the hospital so I could be closely monitored, as a high dose of steroids can cause high blood pressure, heart attack or hyperglycemia. He said he would admit me as soon as I chose a date and I did all the pre-op work while I was there.
I considered putting it off for a couple of weeks due to insurance issues and scheduling conflicts. However, I decided my health was too important and I was losing sleep worrying about continuing vision loss that I might never get back. So, on Tuesday I became a patient once again at Northwestern. They started the IV and are giving me 1000mg of Prednisone a day. So far, my blood pressure is a little high but stable. I have experience bad headaches and last night my blood sugar was really high (389), so I am now receiving insulin. Today it is under control.
The plan is to get another dose tomorrow and follow my blood sugars throughout the day. Then they ordered me a glucose monitor for home and I will track it for the next month. I will continue to take oral Prednisone at a lower dose (80 mg/day) at home for another four weeks. This is still a rather high dose, as normally I take 6 mg a day.
Hopefully on Saturday I will still be able to go to Camp Timberlee in Wisconsin with Alyssa and her Brownie troop. Keep me in your prayers and I will keep you posted!
Wednesday, April 11, 2012
Stevo gets a job
We had a great start to the week. Steve landed the job and should be starting April 14. He'll be working for a semi-start-up company doing medical sales to surgeons. The best news is his territory is Illinois, Wisconsin and part of Indiana, and will require only overnight travel. The benefit package appears to be much better than the last company and the funding hopefully will be better as well. Hopefully this time the company will grow big and be bought by another company. Even though we have not received a paycheck yet, we just feel so blessed that he got his job. A big weight has been lifted.
I went for more physical therapy and the eye doctor recently. In addition to the good, I have been having some stomach issues and pain in my abdomen and just so happen to have a general surgeon on Tyler's travel soccer team. At our game Saturday, I had a physical consultation in the parking lot. I found I have two types of hernias. One is a ventral hernia up high that was repaired 16 years ago but came back, and the other is an umbilical hernia, so now my belly button is distended out like when I was pregnant. It causes digestive issues. I'll need outpatient surgery but it's a 3-4 week recovery. I plan to do that maybe mid-May.
Yesterday I went to the eye doctor, Dr. Cohen, to track the optic nerve size. He said the tumor has gotten significantly larger and a lot of swelling around it is affecting my vision. Unfortunately he has no answers. We put in several calls to other eye experts, one in Michigan and two in Philadelphia, and late this afternoon Dr. Cohen told me the two doctors in Philly recommended I be admitted to the hospital for extremely high dose steroids to bring the swelling down. When I asked why in the hospital, he said the high dose steroids will cause me to gain extra fluid weight as a side effect, which can affect my heart and kidneys and I need to be closely monitored. Afterward I'll continue steroids for about a month and hopefully it'll keep the swelling down enough that I don't lose more vision. He'll call my internist, Dr. Havey, to see if it is safe to do this and if we can get it done before there is more permanent damage. Meanwhile, we have not heard from the Michigan doctor yet. Looking online, there are not many patients with optic nerve tumors or doctors with experience in this area. I NEED A MIRACLE.
Whatever they do, they only have three weeks to figure it out. I have a give forward-style trip to take. I'm going to Atlanta to visit Sheila and her family and we'll play, have girl time and a little R&R. I am glad that I'm getting away.
I'm working on the projects that I want to get done before school is out. We got the carpet cleaned and next we're getting the house cleaned. Outdoor soccer is in full swing. We have three games on Saturday.
We had Easter with the family, which was fun. I think I drank too much but it was so nice to get out and it was really relaxing. The Easter Bunny came to our house so there were lots of candy, gum and treats. Steve even got me Trinidads.
Today I picked up my two new pairs of glasses. You have no idea what a difference. My prescription had changed so much and these glasses are so much better. I still want to look at lights for the house and I really want to organize my photos and closets so that I can enjoy the kids when they get out of school.
I went for more physical therapy and the eye doctor recently. In addition to the good, I have been having some stomach issues and pain in my abdomen and just so happen to have a general surgeon on Tyler's travel soccer team. At our game Saturday, I had a physical consultation in the parking lot. I found I have two types of hernias. One is a ventral hernia up high that was repaired 16 years ago but came back, and the other is an umbilical hernia, so now my belly button is distended out like when I was pregnant. It causes digestive issues. I'll need outpatient surgery but it's a 3-4 week recovery. I plan to do that maybe mid-May.
Yesterday I went to the eye doctor, Dr. Cohen, to track the optic nerve size. He said the tumor has gotten significantly larger and a lot of swelling around it is affecting my vision. Unfortunately he has no answers. We put in several calls to other eye experts, one in Michigan and two in Philadelphia, and late this afternoon Dr. Cohen told me the two doctors in Philly recommended I be admitted to the hospital for extremely high dose steroids to bring the swelling down. When I asked why in the hospital, he said the high dose steroids will cause me to gain extra fluid weight as a side effect, which can affect my heart and kidneys and I need to be closely monitored. Afterward I'll continue steroids for about a month and hopefully it'll keep the swelling down enough that I don't lose more vision. He'll call my internist, Dr. Havey, to see if it is safe to do this and if we can get it done before there is more permanent damage. Meanwhile, we have not heard from the Michigan doctor yet. Looking online, there are not many patients with optic nerve tumors or doctors with experience in this area. I NEED A MIRACLE.
Whatever they do, they only have three weeks to figure it out. I have a give forward-style trip to take. I'm going to Atlanta to visit Sheila and her family and we'll play, have girl time and a little R&R. I am glad that I'm getting away.
I'm working on the projects that I want to get done before school is out. We got the carpet cleaned and next we're getting the house cleaned. Outdoor soccer is in full swing. We have three games on Saturday.
We had Easter with the family, which was fun. I think I drank too much but it was so nice to get out and it was really relaxing. The Easter Bunny came to our house so there were lots of candy, gum and treats. Steve even got me Trinidads.
Today I picked up my two new pairs of glasses. You have no idea what a difference. My prescription had changed so much and these glasses are so much better. I still want to look at lights for the house and I really want to organize my photos and closets so that I can enjoy the kids when they get out of school.
Sunday, April 1, 2012
Things are getting brighter
At the end of February I went to Northwestern Memorial to see who I thought was my neurosurgeon, Dr. Bendok, in person. I had not seen him in more than a year and a half, although over this time my internist, Dr. Havey, had been making sure I was obtaining MRIs of my brain and spine every six months and sending all MRI scan reports to Dr. Bendok's office. When Steve and I walked into the office, the first question he had for me was, "What does your neurosurgeon think of the scans and changes you've had in the last year and a half?" Steve and I both looked at each other and said, "What doctor?" Dr. Bendok thought I was seeing a doctor at MD Anderson. We told him we were understanding that he had been my doctor since Dec. 2009, when I had returned from MD Anderson with complications and he became my physician through the ER, since one of his partners, Dr. Chandler, had told me he would not follow me with complications.
Luckily, there have been minimal changes in my brain tumor and some growth in two spinal cord tumors, and as I am asymptomatic, Dr. Bendok did not recommend doing any treatments or surgery. Before leaving his office, we confirmed that he would be taking care of me from this point forward.
Of biggest concern is herniation in my cervical spine. It is herniated from the top of my neck to my upper back. Basically, it's like the bones are pushing down and all of the soft areas that normally protect the nerves are squished out, and what I feel is pain in my left upper arm and deep bone pain in my right arm to my elbow, as well as numbness down to my fingers on the right side. So after wondering these past two years if I had a dormant infection or metastasis, had this doctor actually looked at these reports prior to this appointment, I would have had this answer long ago. Instead, this problem has only just worsened.
Regarding treatment, he said I may require cervical fusion, which would entail putting in rods and a bone graft to stabilize my upper spine, yet it may only prevent this pain from worsening. He mentioned steroid injections also. He did not want to do either of these two options at this time due to my history of infection with the last surgery. As for now, I go to the Rehab Institute of Chicago for traction and physical therapy twice a week. Things seem to be getting a little better, yet I don't think the pain will ever completely go away.
Other than seeing the neurosurgeon, I've had two precancerous skin treatments on my arms and chest with blue lights, which appears to work well with squamous and basil cell cancers.
Also, I've had two steroid injections in my right foot for a painful area where my bones are rubbing together, and eventually it will require surgery to have scar tissue removed.
Since January 15, I have been paying all medical expenses out of pocket because Cobra had not kicked in, but I received a call this past week with the best news I've had all year: the state finally decided to approve me for Medicare (woo hoo!) and not make me wait for enrollment in July. This week I hope to see if they can retroactively submit all my medical bills from Feb. 1st for coverage under Medicare.
So there is one prayer answered. We shall find out soon if another prayer is answered, as Steve has had a final interview with a company last Thursday and should know something early this week.
I saw my low-vision eye specialist and placed my order yesterday at Costco for new magnifier glasses. My vision has worsened, yet the best they can offer is just magnification and better lighting.
I received a phone call several weeks ago that my aunt (my real dad's sister) went into liver failure and was not doing well. She didn't suffer long and recently passed away. Upon going to her services, I reconnected with a lot of family from my father's side, most of whom I have not seen or spoken with for many years. Sadly, it took a funeral to reconnect us and we are now planning a happier family reunion in about a year. At the service, I sat next to my 70-year-old aunt who has recently been diagnosed with VHL. Her doctors (the same as mine) said she is probably the oldest person ever to have been diagnosed with VHL. She never went to the doctor and was asymptomatic until recently.
Steve and Tyler have had quite a busy spring break week seeing colleges. They went to Western Michigan, Northern Illinois University, and National Louis University. The latter is really small. Tyler already decided he needs at least a mid-sized college that has a good sports program. He has not chosen his field of choice yet but would like to play soccer if possible. Today he is at Northern playing with their soccer team.
Alyssa and I have been very busy as well. We have mostly done things locally. We went downtown to Chicago one day, taking the train to the city and cabbing over to American Girl and Navy Pier. The store provided us with a personal shopper for two hours due to my vision. They were so nice. It was like the royal treatment. Then we saw Mirror Mirror, the movie, and Alyssa has had many play dates. I've seen Hunger Games and October Baby, too. For me it was a good week because I love movies and I was able to get out and do something I enjoy.
Although the week was fun, I'm exhausted and looking forward to the return of school tomorrow.
St. Patrick's Day was a very special day for me as it marked the close of a very thoughtful fundraiser set up by Diane and Jim Lipuma. My life has truly been touched by the most amazing, giving, thoughtful, sensitive friends as well as strangers who have heard my story/blog. Even though some have never met me or my family, they have made donations to help alleviate my medical bills. It's hard to put into words how that gesture of giving makes you feel, even though I feel like I have done nothing out of the ordinary myself. I believe anyone who was in my circumstances would rise up and live the same lifestyle I do.
I have learned from this experience and have passed on and given forward to others as well as told many others of the GiveForward program. Specifically, I would like to thank everyone who donated, large or small, and all of you who have passed along my story, as well as the two families who donated $500 as matching donors. Both were made anonymously, yet I know they were both friends of Diane and Jim. One of them posted the comment, "God Bless You." Every donation was greatly appreciated. The comments were so touching and have inspired me.
The total contribution brought in a phenomenal amount of slightly over $10,000, which I just received yesterday. Tomorrow I'm opening a special account to keep this money in as the money is going to be used for medical costs. Recently I ordered two pair of glasses. Thank you Shelly for the frames at your cost. In addition, I'm going to upgrade my phone to an iPhone 4G so that I can talk to Siri and have her do things for me. I'm so excited. I might need an Apple class but it's got to be easier than how I do it now. I also really need to get some better lighting throughout my house, like under-counter and brighter lights.
For now, life is looking better and the days are looking brighter. I'm looking forward to spring and spending Easter with my relatives, who I have not seen in months. Hopefully you've all had a wonderful spring break and are returning home safely. I think we only have about 40 more school days left until we're back in the swing of summer. I'd better get my project list in order. Hoping the weather returns back to our 70-degree weather soon.
Luckily, there have been minimal changes in my brain tumor and some growth in two spinal cord tumors, and as I am asymptomatic, Dr. Bendok did not recommend doing any treatments or surgery. Before leaving his office, we confirmed that he would be taking care of me from this point forward.
Of biggest concern is herniation in my cervical spine. It is herniated from the top of my neck to my upper back. Basically, it's like the bones are pushing down and all of the soft areas that normally protect the nerves are squished out, and what I feel is pain in my left upper arm and deep bone pain in my right arm to my elbow, as well as numbness down to my fingers on the right side. So after wondering these past two years if I had a dormant infection or metastasis, had this doctor actually looked at these reports prior to this appointment, I would have had this answer long ago. Instead, this problem has only just worsened.
Regarding treatment, he said I may require cervical fusion, which would entail putting in rods and a bone graft to stabilize my upper spine, yet it may only prevent this pain from worsening. He mentioned steroid injections also. He did not want to do either of these two options at this time due to my history of infection with the last surgery. As for now, I go to the Rehab Institute of Chicago for traction and physical therapy twice a week. Things seem to be getting a little better, yet I don't think the pain will ever completely go away.
Other than seeing the neurosurgeon, I've had two precancerous skin treatments on my arms and chest with blue lights, which appears to work well with squamous and basil cell cancers.
Also, I've had two steroid injections in my right foot for a painful area where my bones are rubbing together, and eventually it will require surgery to have scar tissue removed.
Since January 15, I have been paying all medical expenses out of pocket because Cobra had not kicked in, but I received a call this past week with the best news I've had all year: the state finally decided to approve me for Medicare (woo hoo!) and not make me wait for enrollment in July. This week I hope to see if they can retroactively submit all my medical bills from Feb. 1st for coverage under Medicare.
So there is one prayer answered. We shall find out soon if another prayer is answered, as Steve has had a final interview with a company last Thursday and should know something early this week.
I saw my low-vision eye specialist and placed my order yesterday at Costco for new magnifier glasses. My vision has worsened, yet the best they can offer is just magnification and better lighting.
I received a phone call several weeks ago that my aunt (my real dad's sister) went into liver failure and was not doing well. She didn't suffer long and recently passed away. Upon going to her services, I reconnected with a lot of family from my father's side, most of whom I have not seen or spoken with for many years. Sadly, it took a funeral to reconnect us and we are now planning a happier family reunion in about a year. At the service, I sat next to my 70-year-old aunt who has recently been diagnosed with VHL. Her doctors (the same as mine) said she is probably the oldest person ever to have been diagnosed with VHL. She never went to the doctor and was asymptomatic until recently.
Steve and Tyler have had quite a busy spring break week seeing colleges. They went to Western Michigan, Northern Illinois University, and National Louis University. The latter is really small. Tyler already decided he needs at least a mid-sized college that has a good sports program. He has not chosen his field of choice yet but would like to play soccer if possible. Today he is at Northern playing with their soccer team.
Alyssa and I have been very busy as well. We have mostly done things locally. We went downtown to Chicago one day, taking the train to the city and cabbing over to American Girl and Navy Pier. The store provided us with a personal shopper for two hours due to my vision. They were so nice. It was like the royal treatment. Then we saw Mirror Mirror, the movie, and Alyssa has had many play dates. I've seen Hunger Games and October Baby, too. For me it was a good week because I love movies and I was able to get out and do something I enjoy.
Although the week was fun, I'm exhausted and looking forward to the return of school tomorrow.
St. Patrick's Day was a very special day for me as it marked the close of a very thoughtful fundraiser set up by Diane and Jim Lipuma. My life has truly been touched by the most amazing, giving, thoughtful, sensitive friends as well as strangers who have heard my story/blog. Even though some have never met me or my family, they have made donations to help alleviate my medical bills. It's hard to put into words how that gesture of giving makes you feel, even though I feel like I have done nothing out of the ordinary myself. I believe anyone who was in my circumstances would rise up and live the same lifestyle I do.
I have learned from this experience and have passed on and given forward to others as well as told many others of the GiveForward program. Specifically, I would like to thank everyone who donated, large or small, and all of you who have passed along my story, as well as the two families who donated $500 as matching donors. Both were made anonymously, yet I know they were both friends of Diane and Jim. One of them posted the comment, "God Bless You." Every donation was greatly appreciated. The comments were so touching and have inspired me.
The total contribution brought in a phenomenal amount of slightly over $10,000, which I just received yesterday. Tomorrow I'm opening a special account to keep this money in as the money is going to be used for medical costs. Recently I ordered two pair of glasses. Thank you Shelly for the frames at your cost. In addition, I'm going to upgrade my phone to an iPhone 4G so that I can talk to Siri and have her do things for me. I'm so excited. I might need an Apple class but it's got to be easier than how I do it now. I also really need to get some better lighting throughout my house, like under-counter and brighter lights.
For now, life is looking better and the days are looking brighter. I'm looking forward to spring and spending Easter with my relatives, who I have not seen in months. Hopefully you've all had a wonderful spring break and are returning home safely. I think we only have about 40 more school days left until we're back in the swing of summer. I'd better get my project list in order. Hoping the weather returns back to our 70-degree weather soon.
Sunday, February 26, 2012
I'm finding that things happen for a reason
Merry Christmas and Happy Belated New Year to everyone. Obviously, Christmas cards never did happen this year but I still plan to post some photos on the blog. I don't know if it was the weather being more mild or my lack of motivation, but I never got around to finding the perfect picture.
As for Christmas, everyone had a wonderful time even though it was very different than I had planned. I got very sick prior to Christmas and was unable to celebrate with my family or go to church or do our traditional Christmas celebration with the relatives. Steve and Alyssa did go, though. Tyler stayed home and took care of me. We all enjoyed our gifts. GiveForward (http://www.giveforward.com/wecareforkim) sent us a box containing a gift for everyone in the family -- things like a scooter, video game, and a Live Love Laugh cross, which I love.
We had a wonderful New Year's Eve with my great neighbors. As for New Year's resolutions, I decided I want to eat more nutritiously and focus more on a healthier lifestyle. In addition, one of my neighbors asked me to join a Bible study group so I committed to starting a more spiritual life as well.
As for my health, I did have my brain and spinal MRI scans and will finally be seeing the neurosurgeon tomorrow. I'd been waiting for nearly six months. I don't anticipate anything major but I do know I have some pinched nerve or disc pinching causing me to have pain in my upper arms, like deep bone pain. Hopefully there's some sort of steroid injection I can take to relieve this pressure because I refuse to have any more surgery after my last bout with infections.
In addition, I saw the eye doctor, Jack Cohen, who has still no answers for me at all. He said he plans to go to a conference this spring to see if there is anything new on the forefront to treat optic nerve tumors. As for now, in all the research I've done, everything has failed or caused further vision problems or blindness. The scariest thing is my tumor continues to grow at a slow rate, yet my vision seems to be worsening. I see very grainy, like Seurat's paintings with dots. All my colors look the same, which drives me crazy. As you lose your vision, it's irreparable according to the doctors. My biggest fear is blindness.
I need to make a trip to the vision specialist to get another pair of stronger-magnification prescription glasses. Most of you use readers like 1.5 or 2.0, but I'm up to 8.0. In addition to the 8.0s, I still use a handheld magnifier to further assist in reading print. I can't stand it, although I do have to count my blessings that technology has made available the Mac computer and the Acrobat (a machine that blows up my print). Without these I would be lost from seeing any print materials.
Besides having bad vision, I get less light in, and the winter, even though it hasn't been snowy, really seems to affect my mood. Whether it be the shorter days with more darkness, or the days are darker and drearier, I feel that this year I've dropped off the face of the earth and haven't talked to anybody for ages. It's been a very depressing time and I'm sorry for not reaching out to people in the past few months, but I haven't connected with anyone really. Hopefully spring and the sunnier days ahead will help.
Still, my greatest joy is going to the movies with a big screen, and I've been listening to many books on tape as I've always been an avid reader.
In January, I noticed an unusual skin spot on my right calf, which turned out to be squamous cell, and I had that removed with Mohs surgery. In addition, I did blue-light treatment on some dry, precancerous areas on my face, and now my skin looks awesome. At my followup appointment, my doctor said she wants me to do the treatment on precancerous areas on my arms and chest too, as it worked so well on my face. Although it's painful, it's worth the result. I plan to take care of this before spring.
As you can see, January was a very busy, stressful month, but the biggest stress was when Steve lost his job mid-January. The worst of this is not just financial, but it is medically burdensome as well from an insurance standpoint. We took out a Cobra plan from the company and the premiums for coverage are very high, so in addition I tried to apply for Medicare. I was denied because open enrollment ended January 1st and the next enrollment is June 1st. We missed the cut-off by two weeks and have been arguing with the Springfield Medicare office because this was a life-changing event that occurred, and we feel it should be reevaluated. So far, all we've heard is "No." The downside is, now that I've applied, they consider Medicare my primary insurance (which makes no sense to me since I was denied) and I have to pay out-of-pocket unless I'm hospitalized. Doesn't this seem crazy?
So, thank goodness for all of the donations from the GiveForward fundraiser (http://www.giveforward.com/wecareforkim), which ends on March 17. Thank you to all of you who have donated and shared the link with your friends. Say your prayers that Steve finds employment soon so that this whole issue will be resolved. Anybody who has connections in the medical sales field, please let us know.
Prior to our insurance ending on January 31, I was unable to get my appointment in for a followup MRI to my kidney or a visit to a transplant coordinator. Hopefully, if Medicare reconsiders, I will do these visits sooner rather than later, because MRIs cost $3,000-4,000.
On the bright side, at the end of January we had our second annual DZ reunion. It was great to get out and enjoy the night with all my close friends and "cheerleading squad," including DiTy, Lori, Carrie, Karen, Nancy A., Nancy T., Patti and all the others who attended.
I haven't been doing so well with my nutritional eating, but on the spiritual side of life, things have been very rewarding. I just completed a six-week Bible study and start another six-week session this Wednesday. I met a wonderful group of women who are also new to studying the Bible. Besides learning much, I have found this to be a very peaceful and meaningful time. This past weekend I attended a Women in Christ spa retreat in Lake Forest. It was a very wonderful experience. My new friend Gail, one of the Bible class facilitators, says nothing happens by chance with God; when you pray and ask Him for help, He really does answer your prayers. He will work through you in your life and what you do, and you sometimes have to look outside the box for the answers. Thank you Gail for your friendship, prayers and a wonderful weekend. In addition, Gail plans to hook me up with some miracle healers she knows.
Since January, I have been meeting people who I believe I was truly meant to cross paths with. Not only have I been able to help them with their medical crises, but I have found that it has been rewarding to be able to help others again as the nurse in me has been dormant for years. One such girl has lymphoma of the eyes and we plan to somehow work together to support others going through similar circumstances, as the doctors rarely give you the right resources, e.g. transportation, social security benefits, websites, clinical trials, support groups, etc. As for now, it is just an idea, but I can see this turning into something as a sort of web-based resource for physician referrals. Maybe this is why I've had these trials, because maybe this is my true calling.
As for the kids, Tyler made the Honor Roll last semester and now we have a sticker for the car. He's still on indoor travel soccer three days a week. Alyssa does Brownies, jazz, tap and basketball, and she does very well in school as well. It seems like Steve is working harder looking for a job than he did when he had a job. Rather than the usual stay-home for spring break, Steve and Tyler will be traveling for several days to look at colleges with Tyler's friend. Hopefully this will get Tyler more excited about his future, because right now he has no interest and doesn't know what he wants to do when he grows up. As for me, I'm looking forward to watching the Oscars tonight at my neighbor's annual Red Carpet Night.
Wishing you all the best in your lives and spring break travels. I'll try to be a better friend and hope to see you all more often. At least I didn't wait so long to post this time.
As for Christmas, everyone had a wonderful time even though it was very different than I had planned. I got very sick prior to Christmas and was unable to celebrate with my family or go to church or do our traditional Christmas celebration with the relatives. Steve and Alyssa did go, though. Tyler stayed home and took care of me. We all enjoyed our gifts. GiveForward (http://www.giveforward.com/wecareforkim) sent us a box containing a gift for everyone in the family -- things like a scooter, video game, and a Live Love Laugh cross, which I love.
We had a wonderful New Year's Eve with my great neighbors. As for New Year's resolutions, I decided I want to eat more nutritiously and focus more on a healthier lifestyle. In addition, one of my neighbors asked me to join a Bible study group so I committed to starting a more spiritual life as well.
As for my health, I did have my brain and spinal MRI scans and will finally be seeing the neurosurgeon tomorrow. I'd been waiting for nearly six months. I don't anticipate anything major but I do know I have some pinched nerve or disc pinching causing me to have pain in my upper arms, like deep bone pain. Hopefully there's some sort of steroid injection I can take to relieve this pressure because I refuse to have any more surgery after my last bout with infections.
In addition, I saw the eye doctor, Jack Cohen, who has still no answers for me at all. He said he plans to go to a conference this spring to see if there is anything new on the forefront to treat optic nerve tumors. As for now, in all the research I've done, everything has failed or caused further vision problems or blindness. The scariest thing is my tumor continues to grow at a slow rate, yet my vision seems to be worsening. I see very grainy, like Seurat's paintings with dots. All my colors look the same, which drives me crazy. As you lose your vision, it's irreparable according to the doctors. My biggest fear is blindness.
I need to make a trip to the vision specialist to get another pair of stronger-magnification prescription glasses. Most of you use readers like 1.5 or 2.0, but I'm up to 8.0. In addition to the 8.0s, I still use a handheld magnifier to further assist in reading print. I can't stand it, although I do have to count my blessings that technology has made available the Mac computer and the Acrobat (a machine that blows up my print). Without these I would be lost from seeing any print materials.
Besides having bad vision, I get less light in, and the winter, even though it hasn't been snowy, really seems to affect my mood. Whether it be the shorter days with more darkness, or the days are darker and drearier, I feel that this year I've dropped off the face of the earth and haven't talked to anybody for ages. It's been a very depressing time and I'm sorry for not reaching out to people in the past few months, but I haven't connected with anyone really. Hopefully spring and the sunnier days ahead will help.
Still, my greatest joy is going to the movies with a big screen, and I've been listening to many books on tape as I've always been an avid reader.
In January, I noticed an unusual skin spot on my right calf, which turned out to be squamous cell, and I had that removed with Mohs surgery. In addition, I did blue-light treatment on some dry, precancerous areas on my face, and now my skin looks awesome. At my followup appointment, my doctor said she wants me to do the treatment on precancerous areas on my arms and chest too, as it worked so well on my face. Although it's painful, it's worth the result. I plan to take care of this before spring.
As you can see, January was a very busy, stressful month, but the biggest stress was when Steve lost his job mid-January. The worst of this is not just financial, but it is medically burdensome as well from an insurance standpoint. We took out a Cobra plan from the company and the premiums for coverage are very high, so in addition I tried to apply for Medicare. I was denied because open enrollment ended January 1st and the next enrollment is June 1st. We missed the cut-off by two weeks and have been arguing with the Springfield Medicare office because this was a life-changing event that occurred, and we feel it should be reevaluated. So far, all we've heard is "No." The downside is, now that I've applied, they consider Medicare my primary insurance (which makes no sense to me since I was denied) and I have to pay out-of-pocket unless I'm hospitalized. Doesn't this seem crazy?
So, thank goodness for all of the donations from the GiveForward fundraiser (http://www.giveforward.com/wecareforkim), which ends on March 17. Thank you to all of you who have donated and shared the link with your friends. Say your prayers that Steve finds employment soon so that this whole issue will be resolved. Anybody who has connections in the medical sales field, please let us know.
Prior to our insurance ending on January 31, I was unable to get my appointment in for a followup MRI to my kidney or a visit to a transplant coordinator. Hopefully, if Medicare reconsiders, I will do these visits sooner rather than later, because MRIs cost $3,000-4,000.
On the bright side, at the end of January we had our second annual DZ reunion. It was great to get out and enjoy the night with all my close friends and "cheerleading squad," including DiTy, Lori, Carrie, Karen, Nancy A., Nancy T., Patti and all the others who attended.
I haven't been doing so well with my nutritional eating, but on the spiritual side of life, things have been very rewarding. I just completed a six-week Bible study and start another six-week session this Wednesday. I met a wonderful group of women who are also new to studying the Bible. Besides learning much, I have found this to be a very peaceful and meaningful time. This past weekend I attended a Women in Christ spa retreat in Lake Forest. It was a very wonderful experience. My new friend Gail, one of the Bible class facilitators, says nothing happens by chance with God; when you pray and ask Him for help, He really does answer your prayers. He will work through you in your life and what you do, and you sometimes have to look outside the box for the answers. Thank you Gail for your friendship, prayers and a wonderful weekend. In addition, Gail plans to hook me up with some miracle healers she knows.
Since January, I have been meeting people who I believe I was truly meant to cross paths with. Not only have I been able to help them with their medical crises, but I have found that it has been rewarding to be able to help others again as the nurse in me has been dormant for years. One such girl has lymphoma of the eyes and we plan to somehow work together to support others going through similar circumstances, as the doctors rarely give you the right resources, e.g. transportation, social security benefits, websites, clinical trials, support groups, etc. As for now, it is just an idea, but I can see this turning into something as a sort of web-based resource for physician referrals. Maybe this is why I've had these trials, because maybe this is my true calling.
As for the kids, Tyler made the Honor Roll last semester and now we have a sticker for the car. He's still on indoor travel soccer three days a week. Alyssa does Brownies, jazz, tap and basketball, and she does very well in school as well. It seems like Steve is working harder looking for a job than he did when he had a job. Rather than the usual stay-home for spring break, Steve and Tyler will be traveling for several days to look at colleges with Tyler's friend. Hopefully this will get Tyler more excited about his future, because right now he has no interest and doesn't know what he wants to do when he grows up. As for me, I'm looking forward to watching the Oscars tonight at my neighbor's annual Red Carpet Night.
Wishing you all the best in your lives and spring break travels. I'll try to be a better friend and hope to see you all more often. At least I didn't wait so long to post this time.
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