Hello,
Again, sorry for the sporadic posts but it's been a very difficult few months. After continued testing and multiple doctors visits, scans, etc. my latest issues that put me in the hospital around the middle of August were swallowing problems. I was not able to eat or drink because the muscles that control my swallowing in my throat were forcing food and drink back up my nose when I tried to swallow instead of down into my stomach. The same day this started I had numbness/weakness in my left arm and finally agreed to go to the emergency room. I was in the hospital for 8 days while they pumped me full of steroids, pain meds because of the pains in my left side of my neck and shoulder that has been another on going issue over the past two months and my oncologist again tried to contact Neurosurgeons or any other doctors who could help him determine how to help me. After meeting with a Board of Neurosurgeons in Peoria in addition to the Neurosurgeon from Northwestern my doctor was advised that surgery to remove the tumor in my skull that they believed was the primary cause for many of my problems was simply too risky and not an option for me at all. Too many nerves in the location, too much liability for anyone to take a chance. My doctor then consulted with Doctors from Central DuPage Hospital who have a Proton Radiation facility in Warrenville and thought this might be something that can help pin point the tumor and shrink it. I was released from the Rockford hospital (OSF St. Anthony) on a Thursday, went to CDH the next day, Friday and had one round of regular radiation to a couple small spots of cancer on the back of my spine. I had the same type of radiation in early February 2011 and for no-known reason I had an allergic reaction immediately following this radiation and was then rushed to the emergency room at CDH where I stayed for about 5 hours until I was taken by ambulance back to Rockford and admitted for another 2 or 3 days until they were sure I was stable again. Since then I have been at home and in bed pretty much round the clock. Initially I had to have IV fluids hooked up each night so I didn't dehydrate and didn't end up back in the hospital. Chris moved out here as soon as I went in the hospital and if it weren't for him I would still be in the hospital today because I am unable to take care of myself due to all the constant pain, medication requirements, etc. They also put me on the pill form of Chemo in efforts to shrink the tumor, however, that caused such bad blistering in my mouth and tongue I had to stop after 11 days and struggle terribly everytime I try to eat because everything burns. The swallowing is better now but the blisters make it impossible to eat anything other than pudding, cottage cheese, frozen yogurt etc. because of the acids in most food. Have to stick to very plain, cold things. I can't wait to be able to eat again. :(
As of today I am scheduled to begin the Proton Radiation this Wednesday and will go everyday for at least two weeks but they said they will let me know more next week when we begin. Since they have no idea why I had a reaction to the regular radiation a few weeks ago everyone is a little nervous what will happen with the Proton therapy but hopefully my body is strong enough to handle it. Again the hope is this Proton radiation will shrink the tumor and alleviate the pinching and/or damage to my nerves so that I will be able to swallow, talk and eat again. I am also not able to move my neck due to the pain and that too is suppose to improve but of course no one has any idea that it will. Everything at this point is just a hope no guarantee.
The kids are back to school and doing ok so far. Of course this has been very hard for them and we are taking everything one day at a time and hope it won't be too much longer before we can see some great improvements.
Sorry the tone of this blog isn't very positive and please know I have not lost my positive focus just a very tough time and too many medications right now to be in my right frame of mind. Not being able to take care of myself, work and stress over bills and constant pain is just not a fun place to be right now. :( I know I'll get thru this just as in the past and as always am thankful to all of you who remind me daily I'm in your thoughts and prayers. I will update again as soon as I can. Love to all!!!!
Sunday, September 4, 2011
Thursday, May 26, 2011
Week 82
Long time no blog again.
I just re-read my post from April and unfortunately my happiness was short lived. While the headaches went away completely by the second week of April by mid April unexplained dizziness started. My doctors sent me for an MRI and found so far the radiation had no affect on the tumor in the skull and it had grown slightly. Assuming this was causing the dizziness they put me on steriods AGAIN and wanted me to meet with a Neurosurgeon ASAP to consult on surgery to remove the tumor before things got worse. After at least three weeks of back and forth with Loyola trying to schedule an appt. I finally met with a surgeon at Northwestern who said he didn't feel immediate surgery was necessary and that the tumor wasn't causing the dizziness (no in the right location to cause this symptom) and that we needed to pursue other causes. He wants to keep a close eye on the tumor and operate only when absolutely necessary. Not 100% thrilled but if I can post pone surgery for a little bit that will be nice. So, after 3 weeks of no driving and barely working they're still trying to find out why I'm dizzy. Vertigo meds don't do anything, allergy meds don't help, I'm scheduled for vestibular testing and possible therapy next week - whatever the heck that is. I'm driving (carefully) and working at least part-time again and things are calming down at work so that's nice.
Kids are officially out of school - uuuuuggggghhhhh. Shauna made it about 3 weeks in track and then quit. Both girls are now in a crazy, hectic softball schedule with 2 to 3 games a week - each in different towns usually. Freezing our behinds off this week watching them. :) Nicholas was offered a scholarship for tumbling at Kyla's gym and so far he's really enjoying it and doing well.
So much to do now that the weather is better - tons of yard work, repairs, etc.
Hope everyone is doing well.
Love to all!!!!
Lynn
I just re-read my post from April and unfortunately my happiness was short lived. While the headaches went away completely by the second week of April by mid April unexplained dizziness started. My doctors sent me for an MRI and found so far the radiation had no affect on the tumor in the skull and it had grown slightly. Assuming this was causing the dizziness they put me on steriods AGAIN and wanted me to meet with a Neurosurgeon ASAP to consult on surgery to remove the tumor before things got worse. After at least three weeks of back and forth with Loyola trying to schedule an appt. I finally met with a surgeon at Northwestern who said he didn't feel immediate surgery was necessary and that the tumor wasn't causing the dizziness (no in the right location to cause this symptom) and that we needed to pursue other causes. He wants to keep a close eye on the tumor and operate only when absolutely necessary. Not 100% thrilled but if I can post pone surgery for a little bit that will be nice. So, after 3 weeks of no driving and barely working they're still trying to find out why I'm dizzy. Vertigo meds don't do anything, allergy meds don't help, I'm scheduled for vestibular testing and possible therapy next week - whatever the heck that is. I'm driving (carefully) and working at least part-time again and things are calming down at work so that's nice.
Kids are officially out of school - uuuuuggggghhhhh. Shauna made it about 3 weeks in track and then quit. Both girls are now in a crazy, hectic softball schedule with 2 to 3 games a week - each in different towns usually. Freezing our behinds off this week watching them. :) Nicholas was offered a scholarship for tumbling at Kyla's gym and so far he's really enjoying it and doing well.
So much to do now that the weather is better - tons of yard work, repairs, etc.
Hope everyone is doing well.
Love to all!!!!
Lynn
Saturday, April 2, 2011
Week 74
Hello All- Spring is hopefully here - yeah!! Hope everyone is doing great! Had scans this week and saw my Oncologist again - 30% reduction in tumor markers and size of spots in liver so this has brought me 2 more months off chemo. I'm sooooo happy. My doctor is hopeful that if the numbers continue to improve now that all the surgeries are done and the new meds seem to be working I can hopefully make it thru the whole summer without more chemo. I've finally lost all the weight I gained from the steriods and he said all I can do now is take are of myself, reduce my stress (ha) and exercise more. I'll see him again the end of May and I will have another brain scan in May and see the radiologist too but they figure if my markers are improving and the headaches are almost gone that is a sign. After an overnight stay in the hospital with Kyla following her appt. with the specialist (he wanted to evaluate the seizures for himself right away to determine the best treatment) she is doing really well with a higher dose of medication and feeling like herself again. She's really excelling at tumbling and so excited at all the new things she is learning. Shauna joined the track team in Jr. High and their first meet is Monday. It's a lot of hard work but she seems to enjoy it so far, hope she sticks with it. The girls will both start Softball again in May. So far nothing for Nicholas until the end of summer when Football starts again but we'll see about finding more to do for the summer. :) Hoping work will settle down so I can reduce my hours a little more. Financially not great but overall better for my health. Hope to be able to actually get out and see some of you in the near future now that the weather is getting better and I'm on a longer leash for the time being!! Love to All!!
Wednesday, March 9, 2011
Week 71
Hello All,
Internet at home hasn't been working and still working too many hours so haven't had the opportunity to update my blog. :(
Hope everyone is doing great - spring is coming - yeahhhhhhh!!!!
Doing ok at the moment - radiation was rough, somehow caught strep in the middle of it but at least the throat pain took my mind off the side affects of the radiation. It's been about 3 weeks since I finished and my hair just started falling out really bad last week but it's in the back underneath and I think it might finally be stopping now so I'm not completely bald again. :) My headaches are finally starting to get better - they're not completely gone but sooo much better.
I will meet with my Oncologist again at the end of March and have scans again on the liver but as of my last visit all was going ok - breast MRI came back clean. Now we just have to get rid of the skull and liver spots for good. I haven't felt this good probably since this all started so I am trying to take advantage of it and I hope the weather gets better quickly so I can get outdoors more with the kids.
Kids are doing good overall. Kyla has had some health issues recently which has been scary for all but we're meeting with a specialist next Wednesday and she is on some preventative medication so hopeful this will be short lived. For those of you who aren't aware I had adolescent epilepsy, something my father passed down to me and I have feared which of my kids might also get it. So far Kyla is the one. I was 13 when it started for me, she just turned 12 and my father was between 13 and 14. Since we know what it is hopefully since she is on medication right away we can prevent any further seizures and she will eventually out grow it just like I did. We'll see what the specialist has to add since I still don't know that much about it just that I was thankful it only lasted about 6 months to a year for me on while on medication I didn't have any further issues.
They are anxious to start Softball in the next few months and I promised Nicholas a hiking trip. :)
Love to All!!!!
Lynn
Internet at home hasn't been working and still working too many hours so haven't had the opportunity to update my blog. :(
Hope everyone is doing great - spring is coming - yeahhhhhhh!!!!
Doing ok at the moment - radiation was rough, somehow caught strep in the middle of it but at least the throat pain took my mind off the side affects of the radiation. It's been about 3 weeks since I finished and my hair just started falling out really bad last week but it's in the back underneath and I think it might finally be stopping now so I'm not completely bald again. :) My headaches are finally starting to get better - they're not completely gone but sooo much better.
I will meet with my Oncologist again at the end of March and have scans again on the liver but as of my last visit all was going ok - breast MRI came back clean. Now we just have to get rid of the skull and liver spots for good. I haven't felt this good probably since this all started so I am trying to take advantage of it and I hope the weather gets better quickly so I can get outdoors more with the kids.
Kids are doing good overall. Kyla has had some health issues recently which has been scary for all but we're meeting with a specialist next Wednesday and she is on some preventative medication so hopeful this will be short lived. For those of you who aren't aware I had adolescent epilepsy, something my father passed down to me and I have feared which of my kids might also get it. So far Kyla is the one. I was 13 when it started for me, she just turned 12 and my father was between 13 and 14. Since we know what it is hopefully since she is on medication right away we can prevent any further seizures and she will eventually out grow it just like I did. We'll see what the specialist has to add since I still don't know that much about it just that I was thankful it only lasted about 6 months to a year for me on while on medication I didn't have any further issues.
They are anxious to start Softball in the next few months and I promised Nicholas a hiking trip. :)
Love to All!!!!
Lynn
Wednesday, February 2, 2011
Week 66
Hi All,
Sorry it's been so long again but it's been a rough several weeks again. Ovaries are out and doing good now but it took a lot longer than I was hoping to feel better. If I'm not at work 9 to 10 hour days I'm at the hospital all day for tests, scans, prep now for radiation.
I was supposed to start radiation on Monday but the doctor called on Friday to tell me they're having "technical difficulties" and will start sometime this week or next Monday, Feb. 7th at the latest. :( Not giving me the warm and fuzzies. He tells me not to worry he just wants to make sure everything is 100% before shooting radiation at my head and while I appreciate that I don't like the potential for technical difficulties after we start.
The headaches are still constant so I am having to take medication 3 to 4 times a day. No fun. The hot flashes aren't bad so as long as they don't get worse that part is going good. :) I've started on the femar (new hormone/chemo pill) and other than some joint pain that's pretty good too. I have another appointment with my oncologist Feb.15th and another round of CT scans to check the liver. If the skull and liver aren't improving or at least stable by then I will go back on chemo no other options at that point.
Ohhhh - some good news - rest of the bone scan came back clear - the only cancer going on is in the skull and the growth in the liver is minimal but still growth is not great.
Kids are doing good - enjoying the blizzard and day off from school today.
Hope everyone is doing great!!! Love to all!!!
Lynn
Sorry it's been so long again but it's been a rough several weeks again. Ovaries are out and doing good now but it took a lot longer than I was hoping to feel better. If I'm not at work 9 to 10 hour days I'm at the hospital all day for tests, scans, prep now for radiation.
I was supposed to start radiation on Monday but the doctor called on Friday to tell me they're having "technical difficulties" and will start sometime this week or next Monday, Feb. 7th at the latest. :( Not giving me the warm and fuzzies. He tells me not to worry he just wants to make sure everything is 100% before shooting radiation at my head and while I appreciate that I don't like the potential for technical difficulties after we start.
The headaches are still constant so I am having to take medication 3 to 4 times a day. No fun. The hot flashes aren't bad so as long as they don't get worse that part is going good. :) I've started on the femar (new hormone/chemo pill) and other than some joint pain that's pretty good too. I have another appointment with my oncologist Feb.15th and another round of CT scans to check the liver. If the skull and liver aren't improving or at least stable by then I will go back on chemo no other options at that point.
Ohhhh - some good news - rest of the bone scan came back clear - the only cancer going on is in the skull and the growth in the liver is minimal but still growth is not great.
Kids are doing good - enjoying the blizzard and day off from school today.
Hope everyone is doing great!!! Love to all!!!
Lynn
Tuesday, December 28, 2010
Week 62
Hello All - Long time no Blog
Hope everyone had a great holiday and will have a Happy New Year!!! Been so busy with work and the kids and the holidays over the past two months. Medically there wasn't too much going on until the last few weeks. The shot they gave me a couple months ago is finally working to put me into menapause and the hot flashes have started. They're not too bad yet so I hope it doesn't get much worse. I've also been having terrible headaches which I thought at first was just the change in weather but it's everyday now for about a month and I'm really pretty fed up. If not the weather then I'm thinking hormone levels but my doctor wanted to be sure and ordered another brain MRI which showed everything good in the brain but the small spot of cancer the the base of my skull is increasing slightly. Still waiting to talk to the doctor and find out what he wants to do next.
I'm supposed to start a new hormone pill to stop and kill the cancer and I just met with another doctor and scheduled to have my ovaries removed January 12th which should also help stop the cancer from growing. Until my Oncologist tells me otherwise I'm still planning and try the pill and surgery for another month or two and not go back on chemo right away but obviously I have to do what he recommends. I just went back to work 4 days a week and the additional money coming in would really be nice. :(
On the positive side, we just got back from Disney World in Florida - our first real family vacation. Due to the cancer we qualified for a trip thru the Memories of Love Foundation where they generously provided tickets to Disney, Universal Studios and Sea World and a 5 night stay at a hotel in Orlando. There is no way we could have taken this trip without this assistance, we are so thankful!!! It was a little chilly but Wonderful!
Love to All!!!!
Hope everyone had a great holiday and will have a Happy New Year!!! Been so busy with work and the kids and the holidays over the past two months. Medically there wasn't too much going on until the last few weeks. The shot they gave me a couple months ago is finally working to put me into menapause and the hot flashes have started. They're not too bad yet so I hope it doesn't get much worse. I've also been having terrible headaches which I thought at first was just the change in weather but it's everyday now for about a month and I'm really pretty fed up. If not the weather then I'm thinking hormone levels but my doctor wanted to be sure and ordered another brain MRI which showed everything good in the brain but the small spot of cancer the the base of my skull is increasing slightly. Still waiting to talk to the doctor and find out what he wants to do next.
I'm supposed to start a new hormone pill to stop and kill the cancer and I just met with another doctor and scheduled to have my ovaries removed January 12th which should also help stop the cancer from growing. Until my Oncologist tells me otherwise I'm still planning and try the pill and surgery for another month or two and not go back on chemo right away but obviously I have to do what he recommends. I just went back to work 4 days a week and the additional money coming in would really be nice. :(
On the positive side, we just got back from Disney World in Florida - our first real family vacation. Due to the cancer we qualified for a trip thru the Memories of Love Foundation where they generously provided tickets to Disney, Universal Studios and Sea World and a 5 night stay at a hotel in Orlando. There is no way we could have taken this trip without this assistance, we are so thankful!!! It was a little chilly but Wonderful!
Love to All!!!!
Thursday, November 4, 2010
Week 54
Hello to All!
Not much new going on - work, kids, etc. Feeling good, healing well. Had an appointment with one of my surgeons today and he said everything is looking really good. So far no side affects from the shot they gave me a couple weeks ago and my next appointments are the 16th and 18th. I will start new medication that week and see what my tumor markers have done over the last month. Will probably have scans again toward the middle of December to see if the new meds are working.
Can't believe it's November already and they're forcasting snow - yuck!! Kids are doing good
Hope everyone is doing great!!
Love to all
Lynn
Not much new going on - work, kids, etc. Feeling good, healing well. Had an appointment with one of my surgeons today and he said everything is looking really good. So far no side affects from the shot they gave me a couple weeks ago and my next appointments are the 16th and 18th. I will start new medication that week and see what my tumor markers have done over the last month. Will probably have scans again toward the middle of December to see if the new meds are working.
Can't believe it's November already and they're forcasting snow - yuck!! Kids are doing good
Hope everyone is doing great!!
Love to all
Lynn
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