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.