A birthday without you Amy

Today would have been your 33rd birthday and we would have gone out to Darcy's to order your favorite horseshoe for your birthday dinner. After that I would have done everything I could to make this day more special to you than last years birthday. But this was not to be, you know you are missed everyday by your friends and family. Though we will never understand why you had to leave us we know that you would not want us to dwell on the why, but instead to celebrate all that you accomplished and stood for. Please forgive those us that are still struggling with losing you. Maybe you could lend them some of that strength that seemed to have no end. We may no longer be able to hold you in our arms but we will forever hold you in our hearts. I know you made sure that I promised you that I would move on but I will never stop holding on to the love you put in my heart.

P.S. JJ and I visited your grave today to talk to you and we left roses for you .

      Your loving Husband
      John Orr

My Spirit Will Never Dye

 From Amy's husband John

I know most of you have heard already but to those that haven't Amy past away Friday evening around 8:20. She fought a long hard battle and no matter how much it hurt she still greeted all with a smile and a warm heart. While sorting through some affairs I found this note written by her. 

My Spirit Will Never Dye

  To my friends, family, and readers:

If you are reading this, then my spirit has joined many others in heaven.  Do not fear, for I am not afraid.  Some of you I have known for many years, some but a short while, others my entire life.  Some of you came into my life through one of my many online groups or communities, others only through my blog.  I have loved all of you, even those I will never really know.

I know you all will carry on and remember who I was.  My spirit will live, my heart will continue, my love will be carried.  I do not know if anyone will carry this blog on, but if they do, I hope you may continue to learn from the very thing I started.

If there is anything I want you to take from this blog, it’s to live life each day to its fullest.  Life can be taken from us so quickly, it would be a waste for us not to live it every step of the way.  Leave no step untaken, no stone unturned, no word unspoken.  Tell those you love how you feel and forgive those who have done you wrong.  Life is too short to do anything but smile and love each day.

Keep your heads high, celebrate the life I lived, and cherish those you love.

Huggles

Amy

To all those that wish to come her visitation will be held at the Athens Christian Church on Route 29 on Tuesday January 10th 2012 From 5:00pm till 7:00pm.The funeral service will also be held at the Athens Christian Church on Wednesday January 11, at 10:00am.  If you would like directions or any other info please send me an email at johnboy75@gmail.com. 

In The Pits Steroid Hell

• It has been 4 +years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and completed my third round of a new chemo avastin last  Wednesday.  I have been on the steroid decradon for going on four weeks now, it's not as high as they want the steroid but it's plenty high for my blood. I'm hoping to continue to wean off the steroid since i really feel mostly normal other than the steroid side effects.  Beyond  that, I just want to feel good again for awhile.  I am certain when i get off the steroid I can do this. I will have to see what my oncologist says next time.  i really just want a break from the steroid mentally and physically from the seroid.  mentally more than anything.

If it weren't for still being on the steroid, I thik i'd be doing really well today.  I just finished speech therapy and it was a good day for it.  Now if I can get off the steroid i think I would be feeling much better but I wILL NOT COMPLAIN ABOUT IT RIGHT NOW.  I would just love a few weeks break from it to feel strong once again.  Therapies have begun and so far so good.  WIll have better idea come Friday when my next therapy begins with PHysical.

medically - I would say that physically, I"m as strong as as I'm going to get while on the steroids.I've starrted seeing the decline in my physical  conidtion and less improvement.  I need to be sure to tell my oncologist I've leveled off and seem to be getting worse instead of better.  I would say that's a sign the steroid has done all it's going to and the rest is up to me and my body to deal with.  I know that many doctors, including my docs at Mayo, feel steroids are good, I would normally go with them but at this point I'm seeing less improvement and more decline so it's hard to honestly believe they are doing me any good.

Emotionally - A decrease in my steroid has assisted in decreasing my manic episodes by a hair.  I still seem to go to sleep begging God to take me.  I fully believe this is the steroid, it's exactly what happened before when I was on this steroid.  I would much rather not be here than deal with the mental state I'm in.  please don't think of me as selfish for feeling this way.  It really is the steroid that makes me have no hope.   Why my doctors can't see what is so obvious to me, I may never know.  Maybe they just reallydon't believe what I am telling them.  I just feel that no amount of improvement is worth whaT i m currently experiencing.  ANYONE that knows me, has to be seeing what it is doing because I AM NOT AMY, RIGHT NOW!!!!

Mentally - anyone that knows me, knows that I am the furthest thing from a quitter.  Therefore why is it so hard to not quit right now, mentally, if not for outside influences like the steroids?  I don't believe I've ever struggled as much asI am right now.

Family - season is finally slowing down for John so that should ease some of the burden from him until I can drive again.   Hopefully that time will come real soon although, I have t get off the steroid and through some more therapy before I'm ready for that.

Therapy - SPeaking of therapy, it seems to be going really well.  I have had three or four sessions of speech therapy at this point (working on memory mostly but very important work.  I've made huge improvements already.  I can actually remember things up to 20 minutes from now.  Should be interesting to see where that one ends. I may even end up in bettere position than before I got sick.  ANyone that knows me knows my memoy was never my strongest suit.

ai have not yet met with either the physical or occupational therapist but that will start this week.  I look forward to seeing what physical therapy does with me and hope that it can get me off this steroid before I lose everything I've still got.

I think the guys just pulled in so I'm going to wrap this up now.

huggles,
Amy

Update - One day At A Time

• It has been 4 +years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and will have my third round of a new chemo avastin on Wednesday.

Medically - We will know more in a few weeks what improvements if any are taking place ( I will be getting another MRI at that time.  MY counts are very low at present thanks to the steroid, however, today at least,I am feeling fairly well other than fatigued.  Hoping the swelling in the next MRI Is was down so I can go off the steroid and just go on the chemo.  That would make m me feel 100 times better!!!!I am improving in some areas but it's hard to judge because of the total body weakness caused from the steroids. 

Emotionally - Being trapped at home due to not being able to drive on the steroids has got me the most emotionally down, I think ive been since diagnosis.  I'm trying hard to stay positive but there's not much ot look forward to at the present, especially when th steroids have you feeling so crappy you can' expend much energy to anything positive.  MY counts  were very low yesterday so that doesn't help and not driving is a bigger emptional toll than you realize.  Not that I would be safe or attempt being brhind the wheel right now.   I might be emotionallly down about it but I'm not stupid or suicidal either one!!!!

Family - Just conituing one day at a time.  My son is enjoying high shool, JOhn is finally wrapping up harvest, and with a little luck i'll keep improving.

physically - My leeft side weakness is getting better by the day, however the reason for improvement is still out in the open in my eyes.  The doctors and certain family members think it's the steroids, I think it's the chemo shrinking the blood vessels effectively reducing swelling and that the steroids are just a nuisance i'lI have to put up with a bit longer.  They have been lowered again and I am feeling better so I hope that's enough proof to go off of them next week during my nExt treatment.  Besides the steroids, not the chemo, are hurting my counts.  UGH!!!!We are hoping I am right in ths case. I'm having a good day today, but I refuse to believe it's the best I can hope for.  I'm not ready to be out of this game yet.  

Mentally - In a week when things were only so/so, I did get some positive news on the mind front.  according to some neuroogical testing I'm doing, despite what feels like a major loss in my mental abilities, I am still testing quite accurately compared to what   I was prior to everything happening to me and even high compared to normal.  ai have beeen reassured that, depsite current issuew is shouldn't give up on my my learning dreams.  There' no reason I shouldn't be be able to return to some capacity at some point.  It's going to take more work on my behalf but it's not out of the question.  This is a huge moral booster because I was seriously beginning to think that a lot of my future goals were shot at this point because of being unable to transfer from short term memory to long term.  I guess the iss isn'tbas bad as it appears to me, I'm just used to things coming easier to me is all. 

Ok, I'm going to go warm up in a bath, I will talk to you all again soon and hopefully not so far between this time.  I just haven't hd the energy until now to give a proper update, aslthough short updates can often be found on Facebook if you have me there. 

http://www.facebook.com/dreamcatcher79

UPdate - Doing Much Better Now

Another busy week and feeling a lot better than I was.

• It has been 4 +years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and will have my third round of a new chemo avastin on Wednesday.

Medically - I'm steadily improving with each day and will be starting my third round of Avastin on Wednesday.  SO far I haven't had any side effects other than the expected fatigue.  *KNock on wood*.  I pretty much have my left side strength back and my mind get clearer by the day.

EMotionally - Other than being down in the dumps because I"m not allowed to

Mentally - I've been doing a lot of reading and my concentration is doing well

Family - This was a good week for us.  John is working his tail off and I've barely seen him before 8 PM for a couple of weeks.  My son had his first homecoming dance last weekend.  He went with a friend NIcole Allen.  They had a blast and they looked fabulous.

Other - We had a big reunion Saturday with all my former coworkers.  It was great seeing everyone that I haven't seen since I got sick last October.  THey will forever be family to me.  MY one and only place of employment at this point, possibly forever since I'm on social securitydisability with something that never really goes away.

Update: After a Good Week

Been a busy week but I feel pretty good today and I did yesterday as well.  I'm even typing normal again for the most part just a few minor adjustments.

• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and will have my second round of a new chemo avastin on Tuesday.

Medically - Following my first round of a new chemo for me, Avastin, my symptoms steadily improved from what I was having.  My left side weakness is at times completely unnoticeable.  Where I couldn't type a week ago, I am typing pretty well now.  I am able to get out of bed, get dressed, and pretty much fend for myself now and I couldn't do that a few weeks ago.  ( I couldn't push myself with my left side to crawl out of bed nor could I get up and walk. With the assistance of a cane and the chemo doing it's job, I can now do this pretty easily.)  We won't know for a couple of weeks what positive effect has taken place on the inside but I'm confident we'll see significant decrease again or I wouldn't be making as good of progress as I am.

Emotionally - Other than being annoyed that John doesn't want me driving, emotionally I'm doing pretty good.  It's been helped a lot by my mom being here during the day with me so that I don't feel trapped at home.  The good progress I've been making has me feeling good and confident as well.

Mentally - Other than my Short Term Memory being horrible, I've been doing fairly well.  I'm even able to do some calculations in my head again.  It's not as quick as I once was but it's a start.  Now if only I can figure out how to calculate time again.  (I can't calculate, what time will it be in 4 hours and 15 minutes or if I need to be somewhere at ____ time, what time do I need to leav/get up.  IT just doesn't sink in.)

Family - My son is very busy with band and is preparing for his first ever school dance (Homecoming.  He is super excited because he has a date for it.  He's been doing a lot of leg work to try to make the evening super special for her.  I think he feels a special connection to this girl because he discovered that her dad is also a cancer survivor so she knows what he is going through.  I think they are good for each other and he is really turning on the charm.  His natural romantic side and compassion are oozing everywhere.  I can't wait to see them together Saturday night to go to the dance.


My hubby is hard and heavy into harvest right now.  He is hoping to get off at least half day on Saturday to take me to a picnic with my former coworkerand half the Saturday to take me to dinner for our 15th wedding anniversary (We are still trying to find somewhere new and exciting in Springfield to go eat.  IF anyone has suggestions, we are open to them!!!)

Ok, this update has taken me three days to write so I had better rap it up now.

HUggles, - Amy

Update - Not the news we wanted

This update is going to take me hours to type because I am unable to type with my left hand  ou'll understand after my next update.

• It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor. (It was in June or July but I don't recall the exact date)
• It has been 3 years and  11 months since I completed External beam radiation on October 1.
• It has been 3 years and 4 months since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 21 months since my second resection, 20 since my shunt insertion, and and 19 since the start of a month of chaos.
• ICompletedr7 rounds of Temodar Chemo.

Medically - OVer the past couple of months I have had the worst sympyoms to date from my brain cancer.  I have been experiencing left side weakness and a steady decline in my memory and cognitive abilities.  I had an appointment at Mayo on Tuesday, the MRI did not show positive results.  My tumor has regrown to the size it was prior to  my surgery in October (around that of an orange ( or baseball)It went from nearly gone to this size since April.  Therefore it is growing very quickly, possibly even a GRade 4 now instead of a Grade 3.

It's currently not operable so we are going to try a different type of chemo Avastin.  It is usually rather effective.

Emotionally - surprisingly, I"'m holdin up very well deapite my frustation at my left side weaknesses and being grounded from driving AGAIN by my wonderful husband.  The weaknesses also prevent me from typing with both hands.  This makes life a pain since I have typed with both hands since I was very young.  At one point I could type 53 words per minute, now I"m lucky to get five

I am holding my own despite the news that my cancer has returned with a vengeance.  for now my major symptoms are the left side weakness, memory issues, and trouble putting thoughts together (Thus the other reason this is so delayed.

Mentally - MY short Term Memory has been atrocious!  I Can't do much of anything inside my head.  I used to be excellent at complex math in my head but now I find even simple calculations near impossible to do in my head  (I've returned to using my fingers a lot!!!

Family - My son is enjoying High School and is in the marching band.  John is busy with harvest as the farmers are able to get into the fields.  He's put in a lot of overtime the last couple of weeks.

Well I think that's the majority of it.  Hopefully my left side weakness starts to improve instead of getting worse.  Prayers are welcome that Avastin does it's job and shrinks the tumor back to a manageable size and that any side effects I experience are minor.  The treatment I will be taking is still fairly new sowe also want to pray that it works to keep the tumor at bay and shrink it.  After this one is done, I'd love to have a year or so off medically.  This is an only if GOD HAS Some spare time for my request.  Otherwise I will keep fighting unless the dirty s word keeps coming up (steroids).  I"M not sure how much fight is left in me if I Have to go on steroids.

Update - following round 6 chemo

• It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor. (It was in June or July but I don't recall the exact date)
• It has been 3 years and 9 months since I completed External beam radiation.
• It has been 4 years and 1 month since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 9 months since my second resection, 8 since my shunt insertion, and and 7 since the start of a month of chaos.
• Completed round 6 of Temodar Chemo.

Medically - The shunts still seem to be working and I've tolerated the chemo well. I am probably due for another MRI since it's been 3 months but will need to discuss that with my NeuroSurgeon.

Emotionally - I'm managing to keep my head up despite getting really frustrated at the lack of ability to do what I could after my first surgery. I'm adjusting to a "new normal" yet again. This time being on disability and therefore not working is slowing me down quite a bit and I think that is taking an emotional toll. I'm just not one to be completely stay-at-home when I only have a 14 year old. (I considered being stay-at-home after we had our second child but that was never meant to be. At least with a baby there's always something going on. With just my son, there isn't, he doesn't want to do anything with mom so it puts a huge limit on things.

Mentally - I'm fair. I don't think I will ever be even half of what I used to be mentally but I think I can adjust to what I am now. My short term memory is horrible (I told John my brain is about 64 now so all of you that are near that age and have short term memory issues, think of getting there overnight instead of it gradually declining...) I can't do some of the things that used to come so easily to me. I can't calculate in my head... even simple things. I can't figure times (such as when to leave to get to a certain place) so I'm always late these days and that is very unlike me.

Physically - I think I've done more this week than I have since I had surgery... and I'm paying the price for it. I think I'm learning my boundaries on what I can do without affecting the shunts. This is going to be a long, slow process though.

Chemo - Well, round 6 of chemo went pretty good although it gave me a scare on the second day. I thought for sure it was going to be a rough round when I woke up queasy on the second day. Luckily I got through it with nothing more than being very tired.

Family - I've been running my son to Lincoln a lot lately for band practice. He has a practice once a week and marching practice as well. He seems to be enjoying it and likes the conductor so it's a good thing. He is also playing the baritone again instead of the Sax. He says he thinks he's mastered enough of the sax to still list it as an instrument he can play. School will start for him in about a month. He has 4H shows in two weeks so he is finishing up his projects.

I think the reality of what is going on has hit John. He's been very moody of late and is focusing very hard on redoing out sidewalk. (I had an idea, we tried it, found out it didn't work well, so going for plan B. It looks nice and will be really nice when it is all finished.)

Play - I've been reading a new series about Vampires, Supernaturals, and other things along that lines. Fantasy is definitely my favorite genre. If anyone has watched "True Blood" on HBO, I'm reading the books that it is based off. Well, I've finished the last book I currently have and next two in the series have not been delivered yet so I am going to use my decent brain day to try some brain games while the guys are out working on my son's woodworking project. We saw Harry Potter Deathly Hallows Part 2 at the IMAX yesterday. It was truly an awesome experience and I'm glad we went.

Well, better get started on exercising my brain before it gets too tired to try.

Huggles,

Update - I need some Energy

I have no excuse to have not been sending out updates other than just not thinking about it. My days all seem to run into each other. I honestly woke up this morning asking John why he was getting up. I thought this morning was Memorial Day. *Shakes head* It's just darn hard trying to keep the days straight. I think I'm one of those that is just meant to be on the go working so that I can keep my head on straight. Even in high school I had a ton of things going on each day besides just school.

• It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor. (It was in June or July but I don't recall the exact date)
• It has been 3 years and 8 months since I completed External beam radiation.
• It has been Just shy of 4 years (Friday is 4 years) since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 5 months since my second resection, shunt insertion, and the start of a month of chaos.

Medically - I think I'm starting up a new record, I have managed to stay out of the hospital for an entire 5 months now!!! One more month and I'll be a whole half a year! According to my local doctors, my last MRI shows no change from the previous one in March. I see my NeuroSurgeon in July to talk to him about what he feels. The shunts still appear to be working great *Knock on wood*.

Emotionally - Several things have fallen nicely into place and that is keeping me emotionally stable at this point. A big emotional help was being approved for Social Security Disability. It helps a lot to actually have money coming in again. We had been preparing to lose some of my pay anyway but medical expenses started us off on the wrong track. When my disability through work expired at 6 months we were dependent on John's paycheck and what was left of our savings, post medical. It's nice to be able to breathe a sigh of relief and try to start building our savings back up for the third time in 4 years.

I really need to be thinking of things for my son and I to do this summer. We are at each other's throats being home by ourselves every day. Boy was I wrong when I said that "things will get better when I'm able to drive and not at home by myself all day." I failed to calculate in that my son is now a teenager and doesn't want to do anything with mom. UGH.

Even though my former company is officially closed, I have seen several of my former co-workers at various lunches and gatherings so that has helped keep me on a decent emotional path.

Mentally - I truly think that mentally I'm as good as I will get this time around. If it weren't for the horrid short term memory, it would be easy to work through but when you head to town and forget what you have to do while there, it's not a good thing. Thank God for my iphone!!!

Physically - I still have a long way to go to building myself back up. I started walking again but I'm nearly dead the next day. My physical strength is lower than I ever remember it being. I don't allow myself to lift anything over 10 pounds because I don't trust myself doing it and it pulls. I don't want to do any damage to the shunt and have to start over. I will discuss this will my NS next month. I also continue to struggle finding clothes for the lower half of my body. I am actually still at a lower weight than I was before I lost all the weight I did but it is literally all in my stomach area. I might have to stop by Goodwill next time I'm in town and see what I can find. I want to get back down to the size I was after I lost all the weight so I don't want to buy a bunch of pants in a bigger size if I don't have to.

Chemo - My fourth chemo round when great. I didn't get sick at all and other than being very tired I wouldn't have even known I was on it. I've decided that there's something about the odd-numbered(1 and 3) rounds that don't agree with my body. The 1st and 3rd round I got sick the 2nd and 4th round I didn't. I start chemo again next week. However, instead of it being my 5th round... I'm going to call it my 4th round to see if I can trick my mind/body into not being sick. Wish me luck!!!

Family - My son managed to pass the 8th grade and will be in high school next school year. It will be quite the change for him but I hope it is a positive thing. I think being in a larger school may help him as long as he keeps focused and gets his homework turned in on time.

Relay is next week as well. It will be different this year. It's the first time I will not have my own team. I decided last year that being a captain was just too much on me. I'm really glad I did because there's no way I could have done it this year. I look forward to Relay though. It should be fairly quiet for me this year. Thank you to everyone who has donated to me. It's not too late to donate. Visit http://main.acsevents.org/goto/amy79a if you wish to donate. Any support is greatly appreciated and will help us try to put an end to cancer once and for all.

Well my brain is telling me it's time to either nap or stop working it so I better wrap this up now.

Huggles

I Almost Forgot About Relay

Sorry about the flood of messages today but I just realized I forgot to post about Relay For Life in my last update. I guess I'm having a better head day than I realized. :)

I am again doing Relay For Life this year. It is on June 17th at 6 PM and goes until June 18th at 6 AM. I hope to see many of you there.

There is a Relay For Life "all you can eat" Breakfast Sunday, May 15th (This Sunday) at the Lincoln College Cafeteria in Lincoln, Illinois from 9 AM - 1 PM. You can get your tickets from me Adults - $8 or children under 12 - $4. If we can't get together before Sunday you can also pay at the door. The College puts out a beautiful spread for breakfast and it was delicious last year so I'm sure it will be this year as well. There will also be raffle items if you are interested. All proceeds go to benefit Logan County Relay For Life and if you buy your tickets from me it counts towards my fundraising goal.

I know several of you have already donated to me this year. If you would like to donate to my efforts this year to help towards an end to cancer you can donate on my page: Relay Donations

The American Cancer Society isn't just about research but also about helping cancer patients while they go through treatment. All donations are appreciated and with any luck we will be able to prevent and/or cure cancer in our lifetimes.

Note that the Relay Link on my blog does not work properly.

Update While We are Waiting

Disability sucks. Not sure which direction to go on a lot of things.

• It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor.
• It has been 3 years and 4 months since I completed External beam radiation.
• It has been 3 years and 7 month (today) since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 10 weeks since my second resection, shunt insertion, and the start of a month of chaos.
• 3 weeks ago I had to have my shunt revised with 5 surgeries over 3 days.

Medically - I've managed to stay out of the hospital since January and the shunts appear to be working well. In Mid-April I had another MRI. My NeuroSurgeon read my MRI from March 1 and didn't like what he saw in it. He couldn't verify what he saw but felt that another MRI was needed as soon as I could. That MRI has been done. My local team thinks the March 1 and April MRI show no change. This is good but they also thought my March 1 MRI showed no change. I'm more likely to believe them this time because they didn't calculate in my surgery in the March 1 MRI they read. Due to scheduling issues I will not see my NeuroSurgeon until July 25 so that he can read my MRI.

Emotionally - Needless to say they have shut down the site I work at so I never did make it back to work. Therefore, to all my former co-workers reading this, it was quite the ride but if you are on this email, I truly enjoyed working with you. Good luck to you all in the future.

Thanks to being back behind the wheel, I am working my way out of the depression that was slowly creeping up on me.

Mentally - My mental stamina is still not back to par but It's at about 80% now. I'm doing fairly well with my mental processing (at least it's a huge improvement from a couple of months ago.) My short term memory is shot. Anything up to five minutes might as well not exist. Half the time I'm happy to remember to put the windows in my car up. If I'm lucky I can remember things five minutes after I think of it. I don't think it's all that much worse than it was after my very first surgery in 2008. It just seems worse this time.

Physically - I am still struggling with physical stamina as well. I can get around physically now but I'm pretty weak when it comes right down to it. (I'm sure you all know I don't handle "weak" well.)

The biggest physical struggle I have now is that I can't wear most of my pants and shorts. The steroid I was on at the end of last year made all of my weight go to my stomach. I can't even wear the pants I wore before I lost all my weight last year. UGH!!! I don't weight but five pounds more than I did at that point but it all now lives between my knees and bra!!!

My wounds have all healed nicely and other than a few spots on my head where there are raised areas, you'd never know I had surgery 6 months ago.

Chemo - Round Three of chemo went fairly well. I have found that I do great until day 4 and then I get sick and unable to keep anything down. Round four will be starting next Wednesday (Possibly earlier depending on what my Oncologist says... long story.)

Family - My son graduates from 8th grade next week. I feel old!!! He'll be going to high school next year. YIKES!!!! Anyway, John has been putting in the hours for planting season. As much as we are both itching to get back out on the dance floor I think it might still be a few weeks away. Although he and I were both wanting to go last Saturday before we realized that there was no dance. I'm not sure how well I'll do or if my stamina will hold but I think I could handle a single tip.

OK, I think that's all I can update on right now. I'm tired and my brain is literally telling me to get my tail to bed!!! LOL

Feeling Good; ROund Two Chemo

On day 3 of my second round of Chemo and feeling pretty good.

• It has been almost 5 years since I was hit with a baseball that led to the discovery of my brain tumor.
• It has been 4 years and 7 months since I completed External beam radiation.
• It has been 4 years and 7 month since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 13 weeks since my second resection, shunt insertion, and the start of a month of chaos.
• It has been 2 months since I had surgeries to have a shunt revision and second shunt inserted.

Medically - Both shunts appear to be working and my bone flap appears to have healed now so hopefully I will not have fluid issues again. :) I have not had fluid under my scalp since the shunts were revised. I am on round two of Temodar chemo and so far so good. I have improved a lot the past few weeks. I almost feel human again. LOL

Emotionally - Doing well and improving with each passing day. Biggest emotional issue right now is that all the manufacturing employees at the site I work at have been released and I know some I may never see again. :( I'm still hoping to get back before the last person is gone. (Probably the plant manager.) It's kind of bittersweet knowing that I should still be at the company but can't be because of leave. I've spent 245+- days a year there for 11 years and now it's just gone.

Mentally - I'm actually sharper on my brain games than I ever thought I would be. Mental stamina continues to be my biggest issue. About the only thing I can sit and do for more than an hour is watch TV and even that I can't do for too long.

Chemo - A new category for your enjoyment. I am currently on Day 3 of my second round of Temodar (a brain cancer chemo that is quite effective). At this point, I am doing very well with it. In my first round of chemo, I had some serious nausea issues on day 4 (I couldn't keep anything down). I've been journaling how I feel each day so that I have record of it as we go along.

Family - My son is FINALLY doing well in school so I am pretty ecstatic about it. John is still taking my last health dip hard but he's slowly doing better. It's been a wild few months. My Grandma appears to be developing Dementia/Alzheimers. She seems to be worse each time I see her. My mom is running herself crazy trying to take care of her and I am helpless to do anything since I can't drive. *sigh* My son turned 14 last month and I turned 32 this week. John will be 36 next month so we are in the middle of our birthday crazy time. Not sure there is much more going on.

Huggles,

ROUnd one of Temodar Chemo Complete

I am way behind on updates but I'll blame it on chemotherapy. :D

I am officially on chemo. I went to the local oncologist last Tuesday and I am now on Temodar (oral chemo for brain cancer) I'm taking 145 mg a day for five days and then will be off for 23 days before starting my next cycle. Round one has been completed I did not have any major side effects from it other than posssibly fatigue The only other effect was some nausea but I never got sick so i'm considering it a victory.. I'm not sure if that is still left over from my hospital time or if it's related to the chemo. I"m hoping that going into this not expecting symptoms will push any that may try to sneak in out. Positive thinking has helped me get where I am so hopefully that will continue. In all seriousness, Temadar is a mild chemo in terms of chemo drugs but highly effective in the world of brain cancer. I will be taking two small pills (a 40 mg and 5 mg)each day of my treatment and avoid people that are sick and take extra precautions to prevent illnesses while taking it because, like other chemos, the number of white blood cells are effected. I start round two on March 8... (According to my hubby. I think it's the following week but I just need to mark the days out.))

On a positive note, I have had only mild side side effects from it at this point (It's still early but just the same) I actually feel really good today. It's my first day home that I feel like tackling major physical things good. I hope I continue to feel like this and am able to return to work before they close their doors in about a month. I guess it's one step at a time, I need to get back behind the wheel first. If all this works out like this, maybe my bad luck from the past few months will FINALLY turn around. Hopefully we can finally get stabilized and I can feel like I've been making the right choices again instead of questioning some of what I chose.

Besides, I'm running out of things to do here at home and would rather save some of the more taxing items for when I"m on unemployment but feeling healthy.

A Very Long Overdue Update

I'm blaming the lack of updates on anesthesia.

• It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor.
• It has been 3 years and 4 months since I completed External beam radiation.
• It has been 3 years and 7 month (today) since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
• It has been approximately 10 weeks since my second resection, shunt insertion, and the start of a month of chaos.
• 3 weeks ago I had to have my shunt revised with 5 surgeries over 3 days.

On the good side, the shunt appears to be working now, there were no signs of the Staph infection this time around, and I seem to be healing fairly well. *KNock on wood*

Medically - I have had a second shunt inserted to help keep the cerebral spinal fluid from collecting on the brain or in my scalp. I have a VP shunt(basically a drain to drain the fluid from one place to another that goes from the right side of my brain to a reservoir in the right side of my abdomen. As well as a subgaleal(between the scalp and cranium) shunt that goes to the right side of my abdomen. Together these two shunts are successfully keeping the cerebral spinal fluid from building up in areas of my head. Now if we can just keep these two from clogging up like the original shunt did, we'll be in good shape.

Luckily, since we have two working shunts now, I have not had issues with getting sick anymore. They only had to open a small area of what they had to in the past to do the shunt but they shaved a lot more of my hair this time. (oh well) I have at least three areas of staples on my head (Might be more that I haven't actually found). I also have three areas of staples on my neck where they had to maneuver the shunt as they guided it to my stomach area. I have a large incision in my right side (Not all that different from what an appendix incision looks like.)

My NS wants me to start chemo as soon as possible so I will be returning to the oncologist Feb 15th to discuss beginning Temodar chemo. I will take that five days off 25 for six months and then we'll go from there. (Unless he changes the timeline again then it may be different. Hopefully by this time next week I'll be part of the way through my first round of chemo.

Emotionally - I'm ready for things to slow down for a while so I can get back to work before they shut us down. *sigh*

MEntally - THis is the first time I've felt like sitting down and writing an update so I would say that mentally I'm not anywhere close to where I want to be. I've become a tv-a-holic.

PHysically - I feel like I've been run over by a semi truck!!! I think the doctor lost control of the sstapler when he put me back together. My side and neck both hurt quite a bit from the incisions. I Have to keep my head above my stomach until the scalp finishes healing and that means I don't sleep well. We have a hospital bed so I can sleep elevated but it is just as uncomfortable as being in the hospital without the every 30 minute interruptions. I'm exhausted because of not sleeping well and tired of not being able to do what I want. I'm just not able to do so many things because of various reasons. (Most of my incisions have healed well, the ones on my neck are not as healed as the rest because of it being in an area that is constantly moving. I hope I don't have to go through any metal detectors any time soon because I'm sure the 100 or more staples will set it off. I have some really tight muscles in areas I can't do anything about because of incisions(neck, shoulders). I need my chiropractor as well but I don't think he could work on me if he wanted to because of the shunt lines, incisions, etc. Besides I can't lay on my stomach yet. Might have to try to get in to see him next time I'm supposed to be in town.

I think that's all for the update for now. My brain has done more work in the past hour than it has in two weeks. UGH!!!

Huggles

Amy's status

Amy is out of the OR and in ICU. We were able to see her and she is doing great and so far no problems with nausea. She has a little pain in the belly from the incision for the shunt. They will watch her for a couple of days and if everything is looking good we should be heading home the first part of next week. Thanks again to all of our friend and family.

Amy's status

Hey it's John posting for Amy again, for a quick update the fluid under her scalp is still building up. After a few tests they have determined that the area of fluid collection is not communicating with the shunt. They also believe the shunt tip they just put in is clogged and not draining at all. So now she is undergoing a second operation to put in a second shunt and try to fix the other one. She was taken in to the OR at 2:00pm and they started the procedure at about 3:00pm.

They waited till the last minute to tell us we need to get out of the room and go back downstairs to ICU and wait. Still have a private room but having to pick everything up and move so quickly was a huge pain.

I will keep everyone up to date as more news comes.

A Quick Update From Me

I know that getting an update from my wonderful hubby is not the same as getting one from me. :D Everyone left me to go get real food so I figured I'd take the the to send out an update.

All things considering, I'm feeling pretty good. I really wish was anywhere but here but... I did get a liquid meal tonight. For once the chicken broth tasted good!!! Hoping to possibly be out of here Wednesday.

Our prayers were answered, they found it quickly and so I have minimal incisions. If not for the presssure wrap (it's giving me a headache} I'd be feeling really good. 'd say you've been in surgery too many times when you know th OR staff by name and what their jobs are. I'm in PACU now. Been told that I will be moved to a real room tomorrow, unless I am good enough to go on home.

I have some alarms going off so better send this and start behaving myself.

huggles,

Amy

Amy's status

Amy is in the ICU and we all got to see her. They had to redo the shunt from the neck up. Dr wants to get her started on cemo as soon as possible. For now as soon as she is feeling well enough we can go home by Wednesday. Thanks again to all our friends and family.

Amy's status

This is John posting for Amy. They called her back to the OR early and the procedure should not take much longer than a couple of hours before we can see her again. Thanks again for all of the support and prayers. I will repost when we hear more.

Update Prior to Surgery Four

OK, so I'm a bit behind. Between ugly Amy moving in and my Internet choking, I haven't been able to send out many updates.

*It has been more than 3 and a half years since I was hit in the face with a baseball that led to the discovery of my brain tumor approximately a month later.
*It has been 2 years and 7 months since my first partial resection of my Grade Three Anaplastic Astrocytoma brain tumor. Surgery One.
*It has been 2 years and 3 months since I completed external beam radiation
*I have been seizure free for 19 months.
*It has been almost 11 weeks since my second resection. Surgery Two
*It has been seven weeks since I had my shunt put in place and I began IV antibiotics for a staph infection. Surgery Three
*It was three weeks ago when I completed my IV antibiotics.

Medically - I was doing fine until the swelling I was getting of a morning, stopped going down during the day. The fluid is filling nearly like it was before my shunt surgery. I have also been having some issues with "morning sickness". Occasionally when I eat my breakfast, it doesn't stay down. It only happens now and then and has always gone away after breakfast. Very strange. I've been good since the last week of December so hopefully I'm over that part of what is going on. The swelling continues to get worse and we are worried that the scalp might give way and actually bust so we feel the best bet is to find out why the shunt is no longer working. Therefore, surgery four is scheduled for Monday, January 17th at Mayo. The object of this surgery is to determine where the shunt is blocked/broken and do a slight reroute in an attempt to make it more effective. We'll see how it goes. Hopefully he finds it with the first cut and I just have one set of stitches in the side of my neck. I could have up to five though if my/his luck is bad. Let's pray for finding the bad spot quickly!!! For those of you that want something specific to pray for, pray that the breakage/blockage is near the neck so they can take care of it with a single incision instead of multiple.

The oncologist appointment went fairly well. He seems to be very knowledgeable. After my surgery, we will get with him again to determine when we will start the chemo. I'm ready to do it and get it over with!!!

On good news, I am done with the IV antibiotics and my PICC line has been removed. YAY!!!!!!!

Emotionally - I do believe that I can now see the light at the end of the tunnel. I fully believe this will be it for a while. I have a sense of peace going into this surgery, I haven't had the previous two times. I hope that is a good sign.

Mentally - I just don't want to use my mind for much of anything, including write updates or facebook. It's sad when even fun things become a chore to you. :(

Physically - Other than the baseball sized fluid collection on my right side scalp, I'm progressing nicely in the physical area. I'm slowly building up my stamina now that the PICC is gone. I did put on a total of 29 pounds from the Prednisone but I've already lost 13 of those by dropping water weight. *Yay!*

I still get very tired and I frequently take a nap during the day. Luckily, my body needs the nap because I sleep great at night as well. Otherwise, I'm glad to be able to take a bath and shower without wrapping my arm in plastic wrap (You can't get the PICC wet). It's so nice to be able to lay down in the bath tub or wash your own hair in the shower. It feels great, it really does.

I still have some sore muscles from changing the way I do some things but I'm hoping that I can find a way of stretching them better that won't make me hurt too much. I've made a lot of good progress since my last surgery and it sucks that every time I feel I'm making progress, I have to have surgery again. Oh well, just another obstacle I guess.

I really can't think of much else to talk about and we are almost to Rochester, MN so I better wrap this up. We'll find out around 8 PM what time I have to be at the hospital tomorrow. In the meantime, we are going to meet mom and dad at Canadian Honker for my surgery dinner. I'm trying to decide what I want to order this time...

John will update on facebook and hopefully through email as well (I hope he remembers how to do it, we'll walk through it again tonight since he missed some things last surgery. When I know, I'll send out a quick email about when I have to check in tomorrow. Otherwise, I'm over and out until after surgery.

Huggles,
-- Amy