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 - 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

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

What A Pain That Was!!!

This has been a week I would have gladly skipped. On Sunday, the cultures came back from the fluid in my head and it was positive for Staph infection. Ok, so it's positive and I need to go on some antibiotics... "no big deal" I thought. HA!!! Well, I am now on IV antibiotics every 8 hours to take care of the infection and I'm now being told I'll be on oral antibiotics for it for the rest of my life. FUN!!! This news would not have been as big of deal if I felt that someone... anyone... had a clue what was going on. The people at Infectious disease would say one thing, my Neuros would say another, and the story would change almost hourly. At this point all I really wanted to do was go home. It would have been very easy to send me home Monday on the IV they had started me on and done bloodwork, further testing, and medicine adjustments from there (I have home health here and I am actually giving myself the IVs) ... but no Infectious Disease had to be a pain in the behind and wouldn't let me leave until they knew exactly what kind of infection, how much of the antibiotic to give me, etc. All bloodwork and cultures had to be complete before they'd send me home. Even then they were scheduling tests for when I was supposed to be home. In the end, I was told I'd get to go home Wednesday. However, as of 5 PM on Tuesday, they still had not sent the scripts for my IV to home health (whom needed it by 4 PM). Therefore it wasn't until Wednesday morning that they agreed I could leave and have a late dose of my IV antibiotic. (The thing has an 18 hour life so why it's as big of deal I'm not sure.)

Anyway, we did get out of there Wednesday and got home around 7 PM. We met with a Home Health nurse that night for training for me to administer my own antibiotics. We're doing very well with it. However, I think the 8 hours between thing is going to get old quickly (and as big of idiots as ID is, I don't look for them to even be willing to consider going to 12 hour doses.) Therefore, I get to take my IV at 4 AM, Noon, and 8 PM. Woohoo!!!

To top it off, I'm on a low dose of Prednisone AGAIN. It's ok, I won't be on it for long because I'm supposed to finish it on Saturday. I'm truly struggling with many things right now in the breathing department. Between the Prednisone cough and the labored breathing caused from the antibiotic, it's making my recovery more painful then it really has to be. However, not much we can do.

I realize that this is probably just another confusing piece is the puzzle of the last week. I really didn't get to write a good post about it. Truth is, I'm not much in the mood to relive most of it because it was a huge headache. The shunt is annoying, the PICC (Peripheral IV that has been placed in my arm and goes straight to one of the larger central lines to make getting my antibiotics easier) isn't too bad but it prevents me from showering the way I would like, the coughing and inability to breathe sucks when all you can do is exhale at times, and it is a pain to try to minimize the pain in both your abdomen and head at the same time.

On the bright side... even though it took forever to get things sorted out to get here, we are home, I slept great in my own bed last night, and everything seems to be going ok.

I am about ready to snooze now. I've been going way too long today so I will try to update with better frequency from this point forward.

On Our Way to Mayo

We are making the trip up to Mayo. Things are pretty uneventful so far other than me fighting some of the water weight from the steroids causing me to sound like I'm hacking up a lung. I'm really looking forward to getting off of these things and back to feeling normal.

The schedule is as such for the next week or so.

Monday - Pre-surgical testing and MRI. Will find out after 8 when I need to report for pre-op on Tuesday. (I will post this after we know on Facebook.)

Tuesday - Surgery. Time to be determined when we call on Monday. One of us will post surgical time when we know. John or I will send an update when it's over and we know more.

Wednesday - ? - In hospital. John or I will post updates while I'm in the hospital

We will likely be at Mayo until Tuesday or Wednesday of next week at the minimum as I'm guessing they won't release me to go home until it's at least been a week. Then we'll go from there.

Love ya all and many huggles,

Tentative Timeline but Solid Plan

While no one looks forward to any surgery and especially not a second I feel very confident and good about the route we are preparing to take for the latest obstacle for me as a result of the brain cancer world.

All of us (doctors, my hubby, and I) agree that the issues occurring in my head is not going to go away without surgery. Surgery isn't all that bad of an option anyway because it will tell us what is going on in regards to necrosis/scar tissue, tumor, and will actually open some doors for us for possible future trials or options should it be tumor. I'll get into this in the future.

For now, my biggest issue is the steroids. They are doing their job and keeping me functional right now but I feel my body getting weaker by the day. While I originally took that as a bad thing because I would be going into the possibility of surgery already physically weaker instead of in what I felt was good condition, the surgery feels the sooner the better since it's not likely I'll be off the steroids until the little problem is removed. Meaning the steroids will have less damage time the quicker I get in rather than being on it longer.

With all that said, we have agreed and tentatively scheduled my second resection for October 26th. I'm set on the date unless getting other things sorted out and arranged force us to move it out another week. I feel very good about the surgeon. He and I are very much in the same mindset and outlook. We share a lot of the same ideals and he was very open and honest with me about what he felt would be the issues/biggest obstacles. He's confident in his ability to remove what's there and get me out of it with minimal/no issues. I'm confident that he can do it as well. I really feel as good about him as I did the NeuroSurgeon I originally chose (whom ended up not doing my surgery) and I feel he has enough of the same philosophies as me that he will not hinder my ability to do as I need. I think he will give me nudges in the proper direction with the right force rather than holding me back like my surgeon did with round one.

Anyway, looks like surgery is in my near future. I'm ready for it, I'm pumped to finally have direction and the ability to go from here instead of being in limbo.

(Yes, my opinion is very different this time around. I guess there's a lot to be said about knowing what's going on and having been there and done that. *smile*)

A Not So Typical Update

I'm so far behind on updates I'm not even sure what I have posted about and what I haven't. Therefore I apologize ahead of time if you get repeat information or things are in a really unusual order. Got a lot to update on.

I guess to go back as far as I think I have been since updating (I think we were preparing for vacation last time I updated). Our vacation was AMAZING!!! Definitely the trip of a lifetime. We had a great time at Disney, swimming with the dolphins was absolutely amazing, and the new Harry Potter theme section of Universal is totally cool. We were lucky enough to stay at the Animal Kingdom Resort at Disney and that was truly a worthwhile investment. It really added to the whole experience. We ate WAY too much while we were there but we got the dining package and that kept the costs to a 1/3 or less. Harry Potter was great!!! The Experience Ride was totally worth it and Butterbeer is just YUM! (Sorry for the non-Harry Potter fans that have no clue what I'm talking about). However, despite loving being immersed in the world of my favorite wizard, swimming with our dolphin Roxy took the top prize hands-down. I highly recommend you have this experience if you ever have the time. It is worth every penny. They are truly magnificent creatures. For those wanting to see pictures, they are all loaded on my facebook page http://www.facebook.com/album.php?aid=205440&id=1594381093&l=a8bda42f33 just click on the link to s

The other thing we all truly enjoyed was the experience of meeting family that either we have never met or haven't seen in ages. We were truly awed by the hospitality of all of the relatives we visited. Tim, Tammy, Becky, Grandma Ester, Tom, Polly, and all the kids!!! You guys truly helped us begin and end our trip on a high note. Then, not to be left out, it was great to come home and see John's dad who was visiting from his home in Texas (he basically took the North route why we were taking the South. LOL). We don't get to see him a lot but it's always a treat when we do.

Ok, I guess onto the total opposite of the fun we had on vacation. A few weeks after we returned, I began having what I thought was a sinus infection. It literally floored me for six weeks. After two rounds of antibiotics, it wasn't getting any better. Eventually, things weren't behaving as much like an infection and we ended up with an MRI. The MRI revealed a large amount of swelling in the right side of my head again. They put me on a steroid to try to help ease the swelling. Luckily, that also helped me get over the strange symptoms that I began having towards the end. We will be heading to Mayo for a consultation/additional testing on Friday (appointment at 10:30 AM) to see if we can determine what is going on. It could be one of many things still at this point whether it's scar tissue, regrowth, or something not yet considered we won't know until then. Therefore while we know there are a few different options depending, we don't know what route might be taken without knowing what is going on.

I guess, long story short, we are hoping and praying it is just some crazy benign issue that is causing me some swelling but we are lining things up if it isn't as benign.

I'll keep everyone posted as much as possible as we move along with updates. Now that I can actually stay out of bed longer than a few hours (I literally spent a week in bed a few weeks ago)

Until next update. All thoughts and prayers are appreciated and anyone I know of that is going through their own issues are in mine.

Huggles all

Amy

Should I Think Career Change?

Ok, so the title has very little to do with what this says but I'm in a good mood and wanted to have a little fun with it.

I just heard back from the Neurologist's office and, just as I predicted, there is no change in my scans this time! So it's pretty much the best news we could hear right now! Our prayers have been answered and I'm clear for another _ months. I will know more about what the next step will be when I hear from Mayo but I'm guessing it will be 3-4 months before the next scan, possibly more depending on what they are thinking.

Just wanted to share the good news as I promised!!!

So what do you think... Should I start reading MRIs for a living? LOL

Huggles

The Month in Review... October

So I'm running behind again. I have no excuse other than I have been VERY busy and it's taken me 5 days to write this update. (I've had to change the numbers three separate times!!!)

• I am 16 months past the partial resection of my malignant brain tumor
• It has been 13 months since I completed external beam radiation
• It has been nearly 5 months since my first complex partial seizure and 28 days until I can drive again. YAY!!!!
  
• It has been 2 years and 2.5 months since my brain tumor was discovered

Medically - I haven't had a month with this much to update in the medical category in a long time. As many of you probably are already aware, my follow-up MRI on October 8th showed what appeared to be an increase in the area of enhancement in comparison to the MRI performed in July. This prompted my Neurologist to tell me I should seek the opinion of my NeuroSurgeon to get a "second opinion" on what was going on. Of course, my NeuroSurgeon was fired back in January so it was time to take action on a few of the doctors I had been looking into. It was actually quite simple logic on my part. I figured if you don't succeed with what is considered one of the best in Illinois, then you take it up a notch and you go to the best in the country. This is, of course, what sent us on a road trip two days before Halloween to Rochester, Minnesota which is the home of Mayo Clinic.

The Neurologists that I talked with were great. I really liked their philosophies, the fact they never hesitated to answer my questions, and that they actually agreed with me on some of my views about certain things. They agreed that I made the right decision to decline Temodar after surgery as well as that my last NeuroSurgeon really should have answered the questions that I asked. They were common questions actually of "very informed" patients and they were not unreasonable. They actually seemed quite concerned that he didn't answer these questions and I could tell they were making mental notes of this for future reference. (Questions that we referred to were, "Where was the cranial plate removed?" and "What percentage of the tumor was Grade Three?")

Anyway, in the end, I felt very comfortable with them and they collectively agreed that we were still in the 6 months - 2 year window where the most post-radiation change occurs and that there was not enough change to warrant starting me on any additional treatments as of yet. We all agreed we would schedule an 8 week MRI and we also discussed possibilities that would be available to us should there be concern in any of the upcoming MRIs, including working with my Neurologist back home to line up the correct team should further treatment be required.

While I was not as impressed with the NeuroSurgeon, he was straightforward, honest, and to the point so I couldn't have asked for anything more. He is better than all my previous NeuroSurgeons, except for the one I had originally chose to do my surgery, but then again, I'm not sure there is anyone that is as effective at communicating as he was. He gave us additional thoughts to ponder about my options for treatment should it be needed but he also was in agreement that there was not enough there at the moment to require action right now.

I did finally get a reply from my first NeuroSurgeons office but I am still waiting to receive the corrected documents so that I can send the information to my insurance for claims processing. Hopefully, before the end of the year, we can finally put this issue to rest. My Psychiatrist's office is still working on getting the claims properly submitted for my medication as well. We did, what is hopefully the last, submission of the claims to insurance this past week. "Behavioral issues resulting in trauma to the frontal lobes region of the brain." (or something like that)

And finally, I had a visit with my Radiation Oncologist yesterday and I have been OFFICIALLY RELEASED from his care!!!!! That means one less doctor I need to keep updated with. This is good news and truly shows the progress I've made.

I think that finally wraps up how things went in the medical arena for October.

Emotionally - It's been a roller coaster this past month. Not only was I dealing with the unknown questions about my tumor but now I'm trying to sort things out to deal with the upcoming shutdown of the plant I work at. Not been a good month but for the most part I've managed to keep relatively stable.

Mentally - Honestly, as crazy as things have been, I haven't been paying much attention to my mental functions other than I know it doesn't take much stimulation to exhaust me.

Physically - I think exhausted is the best word. I've been (successfully so far) fighting off bronchitis and sinus issues, an increase in the number of headaches, and some cases of insomnia of late. None of the three go together well when you are also more or less a "single" parent, dealing with several projects at work, trying to make decisions that affect you and your family's whole future, and just basically swamped with things you need to get done at home. Since John has been working the major hours (He has been putting in 30-50 hours of OVERTIME in each two week paycheck) the house has pretty much fallen apart. I get home an hour later than I did when I could drive so that by the time you get home, relax for a few minutes, eat supper, do dishes, throw in a load of laundry, and take a shower... it's way past bedtime. Soon enough we'll get back into our old routine again. I can't wait to get the ok to drive again. It's been a long 6 months. However, we are almost through it and there is no way I could have done it without my parents and the help of many friends. Mom, Dad, Andy, Robyn, Scott, Jamie, Michelle, Hillary, and everyone else who has given us rides where we have needed to be... THANK YOU!!!

Work - This earns its own topic category this month. Just before I went to Mayo, it was announced that my parent company is going to shut down our plant and move the product to Mexico. We do not have a definite time-line yet but there are several that have said that June-August is the estimated time-frame. I'm really not too worried about it. I have several options open to me and it's really going to be a matter of weighing which option is the best for me. There are both full-time and part-time options in my future and they both have their pros and cons. The good news is that John and I can live off of his salary if needed with the exception of what it would cost to have me added to his medical insurance. Therefore, I know that I just need to make enough money to cover the "fun extras" and my medical costs. I can't recalculate those numbers until his plan information is available in a few weeks but I think it can be met pretty easily if I can find either seasonal or part-time work. Might even be able to make it with money I can make with my own "business" by working on computers for people. I'd have to look into the headache that would be first. I will keep this issue posted after I know more but for now, I'm not too concerned with it. We have a solid savings and have already begun cutting back so regardless of what I choose, we will be ready.

Along with the site closing has come many new opportunities for me at work. For the first time in my career I have started "officially" leading a project. One of the projects is within my group of teammates and the other is at a higher level where it will be visible by a lot of people that are pretty high up in the company. I won't deny that I'm scared as hell about the higher level project. I'm not as confident in my abilities to lead projects as I might have once been. I can't deny that there is enough change in my mental capabilities that I'm not sure I'm fully capable. However, I don't back down from challenges and I'm not going to start now! I look forward to the challenge and I hope I'm both physically and mentally able to handle the projects. I figure, if nothing else, it will look good on the resume.

Family - John continues to work the crazy long hours. He's exhausted every night when he gets home and usually I see him long enough to direct him to where supper is and kiss him good night. Luckily, the weather has been decent for the last several days so the farmers are finally making some good progress in the fields. I'm hoping it will stay good long enough that they will be done before the Christmas holidays and therefore John will have no trouble taking his week off between Christmas and New Years like we always do.

My son is still struggling with attitude AND school. He's doing decent in the actual academics if he can just keep himself out of trouble. He's managed to get himself another day of "0" this quarter. I would have thought he would have learned last quarter when what should have been B's and C's ended up being D's. I know this summer/fall has been as hard on him as it has been on the rest of us and I really want to believe that is part of it. Hopefully, when we get back to a normal routine, he will start getting back to a little more normal.

Play - Haven't been doing a whole lot of play although I'll take this opportunity to talk a bit about our trip to Mayo and some of the things we did while there. I have to give them credit, they have made the area a really nice place for patients and their caregivers to be should the need arise. The buildings are beautiful, very well designed and thought out. Beautiful architecture, history around every corner, and really had more of a feeling of home than I ever dreamed a hospital/doctor's office could have. We enjoyed our time there even if it did rain most of it and yes we did have a bit of time for site-seeing. That Thursday night we decided to celebrate that they didn't feel there was any concern of yet and we ate at a fabulous restaurant not far from our hotel. It was definitely ritzier than anything I've ever been to but hey, we were celebrating! We had a great meal with fabulous staff and it really just made me feel wonderful. It was our splurge and after the 7.5 hour drive to get there, I think it was very deserved.

Oh, and we were able to enjoy a good ole A&W restaurant as well on the way home! It appears there are a lot more of them up that way than there are down here. I haven't been to one in ages. Nothing beats a good ole diet A&W and burger!

That's really all of the serious "play" we've been able to do. We didn't really get to do anything for Halloween since harvest was so crazy and I couldn't drive. I told John we'll have to make it up next year. JJ and I will do it without him if he's too busy! I haven't been to a good haunted house in some time so I'm WAY overdue and I've never made it to the Haunted Hayride so that's definitely on the list for next year even if there is a three hour wait!

We have missed the last few dances as well. Unfortunately, when John doesn't get home until 10 minutes before the dance is supposed to start, it makes it difficult to attend. There's a dance this weekend if he gets off in time but I'm not going to get my hopes up even if I'd love to be at this one because we've never danced to this Caller before.

Relay - Yes, the Relay season has started anew! I'm super excited about it now that I actually know what I am doing. I had the privilege of attending the Relay Academy this year and I've got tons of things floating through my mind about it. (More behind the scenes stuff than actual team stuff although some of that too.) I'm determined to have a full 15 person team this year! So, if anyone would like to join me, do let me know. You all know if you are in my area or not. ;)

Also at Academy, I was able to give my first "public speaking" presentation. I was asked to tell my story at the Survivor portion of the Academy. I loved doing it and I really hope that I'll have many more opportunities to speak. As you all know, I love to talk so it really comes naturally to me. I have already been asked to speak at one of the local Relays that I attended last year and I'm really excited about that. Now I have 9 months to think about it before I get to give it!!! I need to talk with them about what angle the want me to take though. Honestly, this is something I've thought about doing as a "side-profession". What more can you ask for than to spread the word about brain tumors/cancer, Relay For Life, the Fight of a Survivor, and just plain motivational speaking? It's something I would love to do so if you need someone to speak at something and you are looking at anything down one of these paths, let me know. I might just be available. :)

I will be putting up donation banners when I get it all sorted out so be on the lookout!

Don't ever say "I can't" always say "I will"!!!

Love ya all and many huggles!!!

Good News from Mayo Clinic

Well, we arrived safely at Mayo and saw the Neurologist. I LOVE HIM!!! He was very upfront with us, answered every question we had, and has a lot of the same philosophy as John and I. I think all the turmoil with the previous ones was so that we could finally find someone we are completely comfortable with.

Ok, ok... so what did they say? Well, there was definitely change in the June MRI and there is a good possibility of it in the October MRI. However, we are still in the 6 - 18 month window that changes occur post radiation and any changes are not significant at this time. So, we will have another MRI in Springfield at the 8 week mark and we will continue working with the doctors at Mayo to determine the best path of treatment. Should any of the future MRIs show change, I will most likely be starting Temodar but he doesn't feel it is to my benefit to start it at this time.

For those that have no idea what I'm talking about, they do not believe it is anything to be concerned about at this time and therefore we will continue to watch it. This is good news!!!

Love ya all and huggles from Minnesota!

-- Amy (Now it's off to find some food)

I Finally Got My MRI

Ok, first a little update on what has happened since I posted my last update.

On my last update: I had called the neurologist concerning the headaches and was told I could not get an MRI until it had been six months and he wasn't concerned about it anyway. It's just scar tissue so nothing to worry about.

Since then: I contacted the insurance company and the doctor is full of crap because there is nothing that prevents a medically-necessary MRI and they could see no reason this would be denied.

Evening of the 9th, while waiting for a headache to go away, I realized part of the headaches developed when I would lay on my right side of my head. I got to thinking that about a week prior I had hit my head hard getting out of my mom and dad's car. The more I thought, that was also when the headaches went from "constant but bearable" to "horribly painful". Now concerned about a possible concussion, I contact his office again.

This is where we come to today. I heard back from his nurse just before lunch and she asked for additional information on what I was experiencing. Well, by this time I was not only dealing with the headache but I was extremely nauseous and just not feeling myself. She called back around 2 and the doctor said that if I was concerned I should go to Prompt Care or the ER. At this time of the day, he would not be able to get me into an MRI for several days but they would be able to push it forward.

So off to Prompt Care we went. I had a great doctor and she agreed that it needs to be looked into. Within 20 minutes I was ready for an MRI. The basic conclusion was as follows: There has been a lot of change since the last MRI but the radiologist was pretty certain that it wasn't recurrence of any of the tumor/cancer. However, he did think there was a significant amount of scar tissue and that it should be reevaluated with another MRI in one to two months. He said that the scar tissue was positioned as such that it was causing pressure on the "flap" where they went in for surgery and thus causing my pressure headaches. They contacted my Neurologist and he agreed with the radiologist's assessment. He wants me to call next week to schedule an appointment with him to discuss the scan in more detail and schedule the next MRI. Basically, if we had not gone with the MRI, it might not have been the end of the world but we'd be stretching this thing out several more months waiting to see if things changed even more significantly thus changing the diagnosis to a possibility of regrowth.

The final verdict being: There is significant change (this is a bad thing but normal post radiation and surgery), none appears to be regrowth (a good thing), the scar tissue appears to be causing some pressure and the headaches as well as the seizures (a bad thing), we need to reevaluate it in a short term setting to make sure there is indeed no regrowth coming (a good thing). Basically, the Neuro had to "eat a little crow" because at first glance it was very suspect for regrowth and every doctor I was in contact with today told me I was well in my right to get this MRI and that this needs to be watched very closely.

Oh, the remaining bad... go ahead and take the steroids and take ibuprophen/tylenol for the headaches. Not much else right now they can do. Gee thanks, Doc!!!

What a day. I'm going to bed now. The good, the bad, the ugly.

A Year (Plus) In Pictures

Today is the one year anniversary of my brain surgery. Here is a special little treat for you that I've been working on. A year and a bit more in pictures. (Scott, you might want to skip this post.)

Sorry about Lack of Update

Thanks for the prompting, Tonya. I'm sorry I haven't updated everyone on my last MRI. The reason is good, I don't have the results yet. I am going to call them tomorrow morning and I hope they have the results by the end of the day. I will be sure to post and send out an update as soon as I know anything.

I did look at the CD when I got home on Friday but honestly, things just look too much different than the last MRI I saw so I have no idea what might have changed. There are a few spots that peaked my curiosity and concern me but I'm hoping they are simply from radiation. Thus why I need the official report this time and you won't be blessed with my predictions. I can say that I am proud to announce I have managed to discover the plates/screws in my head where they put everything back together. :D

Promise I will update as soon as I know anything. For those wishing to pray for something specific, pray that Dr. Amy is wrong and that the spots she sees is simply dead cells caused from radiation and not tumor regrowth. *Huggles*

I'm Taking the Standard Path

Ok, so this is a rare type of thing for me but I've decided, after much deliberation, to take the standard path and do radiation for my tumor. It really came down to me being against the doctors and just about everyone else I talked to so I decided that this time I need to not let it drag out the 10 months I let it go with surgery. There's pros and cons to radiation but in the long run I have to believe that the pros outweigh the cons. Whether it does or not remains to be seen but in the world of cancer you have to make your decision and believe it is the right one at all costs. There is no right and wrong answer with brain cancer because truthfully, there is not cure. You just have to manage the tumor the best of you ability and put your trust in God for he is the only one that can cure it.

The main issues with radiation in the brain is that it can only be done once in a lifetime. This is the one thing that scares me the most. My tumor is still on the slow side and, unfortunately, gliomas tend to transform to higher grades as well as return. So I am playing the one time card on what could be a non-issue for a while. If my tumor does transform it will become the most deadliest type of tumor GBM (You've heard this mentioned with senator Kennedy). If it makes this transition, I have already played what is first mode of defense against it. However, I guess I have to believe that in the time it will take mine to transform, there will be new technology out there and possibly even a cure. Something the doctor said to me made a lot of sense and part of my decision came from the words. "With an Astrocytoma, even a grade two acts like cancer and invades the brain. Radiation is an option with it. With a grade three, it's really not even an option it's a necessity because if you wait, it could be too late."

Anyway, they are supposed to call me in the next two weeks and we will get started. I will attend sessions daily monday through friday for six weeks. Side effects tend to generally start in weeks 2-4 and can range from nausea, fatigue, hair loss, effects like a sunburn, headache, to minor mental disturbances. These can last for up to 4-8 weeks following the end of radiation.
The biggest complaint and the only one not usually able to be "treated" is fatigue. The other major high risk we run is that my tumor is near the optic nerve. I don't pretend to completely understand this but I will explain it to the best of my ability. The brain can handle 6000 rads of radiation before the good brain cells are unable to recover. The optic nerve can hand 5400 rads. Of course, we want to use as many rads as possible to destroy the tumor cells. However, we will have to not use the full so we don't damage my optic nerve. He hasn't presented me with the full plan on doing this yet but he is going to simulate it to see if we can come from a different angle and avoid it more or just how much the optic nerve will actually receive. I'll know more next time we talk. As I told him, that's one deficit I'm not sure I'm willing to take the chance on right now at my age. Therefore, I guess there's still a chance radiation will become something to tuck away but for now you all are aware of the plan.

The Explanation that I Received

One of my first questions to the doctor yesterday was why part of the tumor was left if it was determined that it was a grade three?

This is my understanding of the explanation that I received:

The red dots are good brain cells. The blue dots are tumor cells. As you see in most of the picture on the left there is a high concentration of the blue dots in most of the tumor. (The high concentrated area is what shows up in the MRI) This is the area that the doctor was able to safely remove in a way that would be beneficial to me. However, you also see the area that is circled. This area has a lot more red dots than blue. Therefore, in this area it isn't really beneficial to remove it surgically. This is the area we will attack with the radiation. Actually, I should rephrase that. The radiation will be highest concentrated on the bed of the area that was removed. However, there will be radiation that goes into the other areas hopefully killing tumor cells. I'm sure I'll have a better explanation of the radiation side of things after I speak with the Radiation Oncologist on Tuesday. For now, this is the answer I received on why my tumor was not able to be removed more.

Hope this helps those that asked me questions.

Not Just Any Brain Tumor

Well, we saw the doctor for the first time since surgery yesterday. It was quite a day to say the least. This will be in no particular order and may seem a bit jumbled because there is a lot to get out and I haven't fully wrapped my own brain around it yet so... well, just bare with me.

1. The doctor says I look great and everything seems to be healing well. He was pleased with how things look.
2. I still don't know when I will be returning to work (gotta speak with the manager of my short term disability claim sometime today before I will know.). However, I have been cleared to drive. YAY!!! John and I will be going out a few times over the next few days until I get the hang of it again and make sure I feel strong enough.
3. I can resume light duty activities as long as I listen to my body. This means I can maybe start light weights and lift things a little like I've been doing. *Shush don't tell*
4. Ok, I'll cut to the chase. My tumor pathology also came back. It is an Anaplastic Astrocytoma glioma. This means it is a full blown grade three tumor that has infiltrated into my brain and reproduces at a rate higher than any low grade glioma. This means it is a malignant tumor. (aka brain cancer) Luckily, my tumor is only reproducing at 6% on a scale that goes to 100% so it is still reproducing very slowly, which is very good.
5. They are suggesting radiation to follow to take care of the tumor that remains. I speak with a radiation onocologist here locally next tuesday to discuss this treatment and so John and I can make the decision if we really want to do this. In the brain, radiation can cause either short or long term problems with functions including memory, intellect, and other high function areas of the brain. It can also cause severe fatigue, nausea, etc, during and after treatment. This is a lot to consider since I am sitting here with absolutely no problems.

Ok, I think I summed it all up pretty well. There's a lot more but I really don't have it all sorted in my head enough yet to discuss it. I will type more as I know more.

The Countdown is in Full

Well, it's to the point now that I officially feel comfortable counting down by days instead of weeks. LOL 13 days to go. I guess it's just my lucky number that is making me feel this way. :D

Anyway, this week we are busy packing for our busy next few weeks. We will be spending four days in Ohio at Cedar Point riding roller coasters until my face turns blue and then IOWA later in the week where I will have no interruptions to finish some paperwork. Then the next week it's up to Chicago for surgery. I'm just ready for it. I want it to be over not because of the surgery but because I'm tired of dealing with other things. (I'd rather not get into it right now.) I'm very ready for the surgery and that doesn't bother me a lick. I know it's the right thing I just sometimes wonder why God has given me other things to annoy me while I prepare. I thought he wanted me to be strong and set for this but apparently he is trying to teach me a lesson that I just haven't yet figured out. Maybe that lesson will reveal itself before surgery and maybe it won't. Either way, I know what I must do and that is learn some tolerance. Tolerance to accept that not everyone thinks or feels the same way and we have to accept that difference even if it is showing itself in a situation you should have a say in.

Ok, enough of this. 13 days and counting. WOOHOO!!!

The News Made My Day

I had a wonderful conversation with my NeuroSurgeon on Wednesday. I was able to take care of all the lingering questions that were still fighting in the back of my mind, get the details that I so longed for (yes I'm weird like that), and finally be able to step up knowing I've done what I can to be prepared.

So what did I learn? Well, I learned what will happen the day of surgery in detail. I won't share this information right now but I will after surgery is all over. He did a good job of walking me through from the pre-surgery MRI to what I have to do to be released (more appropriately who I have to get approval from) and finally to what recovery will probably be like. I learned about the pain medications I will be given, what things will occur in order to get the equipment I so dread off of me, and who I will be meeting as we move along. So it was a very good conversation and it was able to finally put that last shred of doubt from my mind.

Ok, I know you are asking yourself, "Surely this isn't the news that made her day. It would probably just terrify me more." And you would be right. So what is the news that made my day... Anyone that knows me can probably take a wild guess at what it is... Go ahead... do that now... Anyone??? I'll give you a hint... I'm doing this very thing the week before surgery?!?!? Ok, fine, he told me that I can ride roller coasters after I am feeling good again. :D That is such wonderful news because I really questioned whether he'd give me the go ahead. I figured it would be a bit risky but he pretty much said if I am feeling up to it and I'm crazy enough to get one... Go for it!!! That was such wonderful words to hear. I keep telling John that I'll start out tame... I'll go for the Ninja at Six Flags instead of anything else crazy like the Raptor at Cedar Point. LOL

Anyway, just wanted to share.

Oh, and did I mention that I just love my NS? He's fabulous and I am positive that I've made the right choice.

Brain Tumor Awareness Week - Wrap-up

To wrap up this week on Brain Tumor Awareness I wish to give some statistics on what is going on in the world of brain tumors.

More than 200,000 people will be diagnosed with a brain tumor this year. Most of these tumors will be metastatic tumors that come from cancer in other areas of the body. However, 40,000 of these tumors will be primary brain tumors.

Brain tumors are the LEADING cause of death in children under the age of 20 and the third leading cause of death in young adults.

14 of every 100,000 people will be diagnosed with a primary brain tumor. (Not tumors coming from cancers elsewhere.)

Brain tumor research is severely underfunded and the survival rates remain significantly lower than those of other types of cancer.

Now I have a question for you and if you are so inclined, I wish you to post a comment with the answer. Other than what you have read in my blog or for those that know me in person what you have heard me say... how many times this week did you hear anything on Brain Tumor Awareness Week? Now tell me, how many times a week do you hear things on other cancers such as breast cancer?

Brain Tumor Awareness Week - Staging

Brain tumors are classified according to the WHO (World Health Organization) system.

Tumors are classified by observations made concerning the appearance of the cells, its tendency to infiltrate into other areas and, its rate of growth. The classification of brain tumors is primarily an observance by a neuro-pathologist and can be classified differently by two different pathologists. Therefore, classification is not always easily determined. Furthermore, a single tumor can have cells of multiple classifications. In this case, the entire tumor is classified as the highest discovered grade found.

Benign Tumors

Grade One

A grade one tumor has cells that are mostly normal in appearance. The cells are extremely slow growing and are even sometimes classified as a birthmark within the brain. The long term survival with a Grade One tumor is extremely good.

Grade Two

A grade two tumor has slightly more of an abnormal look but still appears mostly normal. This type of tumor has the potential to invade into other areas of the brain but are mostly of a slow growing type. A grade two has a much higher tendency of developing or recurring into a higher grade tumor.

Malignant Tumors

Grade Three

A grade three tumor is actively growing and comprises of mostly abnormal cells. It has the tendency of invading surrounding tissue and has the strong possibility of returning as a higher grade tumor.

Grade Four

A grade four tumor is the most aggressive type of brain tumor. It is made of abnormal cells that reproduce at a very high rate of speed. This tumor rapidly invades surrounding brain tissue and actually produces its own bloodflow so it can maintain its rapid pace.

As you can see, there are very distinct differences between the benign and malignant tumors. One of the things that should be noted about the malignant tumors is that they are usually shown as enhanced in MRIs when given a contrast injection. This means they take in the gadolinium very quickly and therefore appear brighter in the MRI.