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 - 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

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,

Surgery Three - Two Week Update

Sorry if I unnecessarily made anyone nervous there just hasn't been much to update on...

• 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 and a half years since my first partial resection of my Grade Three Anaplastic Astrocytoma brain tumor. Surgery One.
• It has been 2 years and 2 months since I completed external beam radiation
• I have been seizure free for 18 months.
• It has been almost 7 weeks since my second resection. Surgery Two
• It has been three weeks since I had my shunt put in place and I began IV antibiotics for a staph infection. Surgery Three

Medically - I continue to fight the aftermath of surgery two (that led to surgery three). I am half way through the IV antibiotics that I will need to take for four weeks before going to oral antibiotics for the remainder of my life.

My shunt appears to be doing it's job despite some slight backup of a morning when I first wake up. I will be talking to Mayo on Monday about it but I believe this is related to the way I sleep and it blocking the shunt in my sleep.

Due to being in the hospital with surgery three and the idiots in infectious disease not understanding that I need to get home and get my treatment going there, my appointment to see the oncologist on November 30th has now been moved to January 4th. I will also be seeing all three groups of doctors at Mayo on January 6th for follow-up (Neurology, Neurosurgery, and Infectious Disease).

The movement of my oncologist appointment will make my return to work a bit more interesting and I'll have to work with my short term disability to see if I can extend my return until after my first round of chemo. I'm guessing I'd be starting it the week of the 10th would love to get one round under my belt before I have to return to work but I guess it will be up to my doctors and MetLife to decide. I'm hoping to get with them this week to get all that paperwork sorted out. (One of the worst parts of having surgery or being sick... dealing with insurance... especially STD).

Emotionally - I can't deny that two surgeries in a single month and feeling pretty lousy during most of the past 30+ days has tested my very emotional resolve. This has definitely been the toughest few months of my three year journey. The end isn't in sight either as I still have more time to do on the IV meds and I still haven't got the trust in ID to not put me back on them. I don't trust them far at all and wouldn't be surprised of anything they decide to do in the next few months. Further, I haven't even started the chemo that has been on hold since my surgery in October. While I don't think it will be a big deal, it's still part of the last few months that has been anything but encouraging in my fight.

I guess, other than that, I'm holding up as good as can be expected. It's emotionally draining... I can't deny that and the near constant pain I've been in this time has not helped my emotional outlook but I'm a fighter and that's not going to change any time soon. We just need to pray that when the IV antibiotics are done, they truly are done and that there are no more surgeries in my near future. That might push me over the calm and cool edge.

Mentally - I really haven't done anything to measure my mental stability of late. Really haven't been in the mood to do anything like that. I'm hoping to get a good baseline one day next week. I'm guessing that it's not going to be on par with my last surgery since mentally I just don't feel as sharp as I was before I went into surgery. I guess I'll wait until the test to say for sure.

Physically - I'm up around 25 pounds since this all started. Not quite as bad as I was after my first surgery but definitely worse than I've been in well over a year. I am struggling mostly with some muscular pains in both sides (they are almost like the pains you get when you "get a stitch in your side" from running). They get worse when I'm coughing or struggling to breathe but mainly act up when I'm standing or walking. It varies in side and sometimes even is in both sides at once. I'm also struggling with muscle pains in my back. I love biofreeze for helping my back. That stuff rocks!!!

As I said earlier, I think I'm fighting a cold now. I just can't seem to buy a break right now. Otherwise, my steristrips on my right side are slowly coming off. I've lost 3 of 12 now. Those that don't know what these are, they sewed up my incision for the tail end of my shunt with disposable stitches then covered them with these special strips that will eventually fall off when things have finished healing. John had them when they did his hernia surgery so they were not new for us. I think they used them on this particular area because stitches would be stressed quite a bit since it would pull every time I breathe. The ones on my neck where the other incision is, haven't even started to peel off. I will get my staples of my head... again... on the 16th.

My PICC seems to be doing pretty good other than being annoying and a pain in the rear to take a shower with. Otherwise, it doesn't bother me a whole lot. Actually, I do have a spot that might be an allergic reaction to the dressing they use. I have a pretty good size red spot that is similar to a blood blister and two more smaller ones that almost look like a poison blister. Now sure if it was an allergic reaction to the tape or just something that happened to appear. The nurse is going to look at it closely again next time I'm due for a cleaning.

I'm moving around pretty good when my sides aren't hurting me. However, I don't appear to be moving as well as I had been mainly because of the PICC line and how careful I have to be with it. I have to use caution not to hit it because it hurts if I do. I also can't get it wet so that rules out doing dishes and the like (Yes, my upper arm and entire shirt gets soaked when I do dishes. LOL)

I'm back to not being able to pick things up off the floor or tie my own shoes but I'll get that back soon enough. Hopefully I'll be driving again by the end of the week... (maybe... maybe not... depends on how my side pains do this week.) I can't get real pants on yet so that will be the first obstacle to overcome. (I love men's lounge pants!!!) It should be interesting to see when I am able to put on my "fat" pants again. Right now the very thought of it makes me hurt because even they are tight thanks to all the prednisone weight. *sigh* Good thing I still had 2 decent pair when I bought my new pants or I'd have to go buy me a few pairs of pants in a size I hope to be out of quickly. (I knew I would curse myself when I finally went out and bought pants that fit after I lost all my weight.)

Family/Home - John is working hard trying to make up financially for the week plus that he had to go without pay while I was in the hospital. He's catching us up fairly well, one half day at a time. Of course, he's also had to take my place doing household chores as well since most of the things I can't do. He's getting pretty good at most of them so I think I'll keep him for awhile. LOL

If we could just get my son to start taking school seriously again, we'd be in good shape. *sigh*

Well, I think that's about it for now. Sorry for not updating for a long time but really mentally I wasn't into doing updates and there hasn't been a whole lot to update on anyway.

Huggles

Post Surgery Three Week Update

Ok, so it's a day late. Had a couple of rough mind days so...

• I am 2 years and 5 months past the partial resection of my grade three brain tumor (Hereby known as surgery one).
• It has been almost 2 years since I completed external beam radiation.
• I have been seizure free for 17 months.
• It has been 3 years since I was hit in the face with a baseball that led to the early discovery of my brain tumor approximately a month later.
• It has been 3 weeks since the subtotal resection of my grade three brain tumor, scar tissue, and necrosis (Hereby known as surgery two).

Medically - After spending 7 weeks fighting what was believed to be a severe sinus infection, I had surgery to remove what is believed to be a sub to total resection of my tumor. The results appeared to be a near equal amount of scar tissue, necrosis (dead cells from radiation), and active tumor. While it's not been determined if the tumor cells are left over from my first surgery and radiation or if it's tumor regrowth, the next step for me is the same. I will be seeing a local oncologist on the 30th to discuss the beginning of a chemotherapy treatment called Temodar. Temodar is a very effective from of Chemo for brain cancer. It is the next step in my treatment and is part of a standard protocol type. This is essentially step three in the typical protocol. There are still many options available although not as effective as Temodar. The current plan will be to do a 28 day cycle for 6 months and then decide what to do from there. This 28 day cycle will run as such. Take the oral based chemo for 5 days and then off for 23. Not sure of the dosage yet but the Neuro Oncologist at Mayo has recommended 150 mg for the first month then 200 mg after that depending on how I tolerate it. While I still don't have all the details of it, I'm guessing I'll begin it the first week of December. That will get me at least one round under my belt before my short term disability is due to expire. (Although I'm hoping I can get them to extend it until after my second round.)

Temodar is usually fairly well tolerated but everyone is different. I should be able to live fairly normally other than the 5 days of taking it and perhaps a few days after. I will have to be careful to avoid being exposed to infections so I may get a little paranoid at times but overall I'm thinking this is a good step and my quality of life will not be severely effected. (Not as much as on the steroids anyway).

Emotionally - Despite a crazy few months, I am holding up pretty well emotionally. I am approaching everything with my positive attitude that I always try to keep. It is just so much easier to be positive than to think negatively. I've been keeping myself busy at home and that helps keep me focused on healing, getting better, and eventually getting back to where I was before I came down sick again.

Mentally - I am about ten times more mentally stable and competent at this stage of my recovery than I was at this stage of my first surgery. Truthfully, I'm probably more mentally stable at 3 weeks this time than I was at 3 months last time. I fully believe that the steroids are the different. Last time I was still on heavy steroids at this point and this time I'm almost off of them. (I know it seems like I blame a lot on steroids but they truly are the problem.) I think this surgery would have been a breeze if I hadn't been on the steroids to begin with. Oh well. At least I'm that much ahead already. The only real mental struggle I have is motivation and stamina. I have to literally force myself to do things but I guess that's not so unexpected given everything I've been through. As for stamina... that's mostly caused from not sleeping as I should. I tend to lay down for 10 hours or so but get up at least once for my Tylenol and several times for bathroom breaks and sometimes one or two times to get a snack since I've hit the major snack binges very early in the AM. Therefore, while I am down for a reasonable amount of time I'm up a lot in the night so my sleep isn't great. I'm sure this is part of my physical and mental stamina issues.

Interestingly enough my mental competency is pretty good thus far. I can play my "brain games" and I'm actually doing fairly close to what I was before my surgery. If I can work on processing quicker, I think I would be right on the same track I was before surgery.

Physically - Other than fluctuating 5-20 pounds a day in weight thanks to the water weight from the steroids, can't wear most of my pants because my waist looks 8 months pregnant, and continue to cough especially later in the day... I'm doing fairly well. My knees are weak from the toll the steroids have put on my joints but they are holding up very well compared to what they have in the past. I have regained the strength to climb steps and I can actually get on the floor and get up but have to use more arm strength to get up than leg (Not the way it should be).

I am able to do a lot of the things I couldn't early on. I can actually get things off the floor or lower shelves without feeling dizzy, don't have to wait as long to get my bearings when I go to get out of a chair or bed, and can pretty much do what I want as long as I'm careful about it. My stamina is still very weak but as I said mentally a lot of that is the difficulty I'm having in getting decent sleep.

I am feeling good and ready to take the next step in my recovery which is slowly integrating a light workout into my daily activities. This will increase my stamina, help me get my strength back, and start me towards getting back to where I want to be. I'm not going to set a crazy goal or anything like that but I am anxious to be able to wear my pants again. Most people know that the word "diet" is a dirty word to me so no that won't be in the goal but rather doing it the natural way by getting my exercise again, getting out of "fast meals" that we've been in the bad habit of lately, and just generally focusing on my health again.

I haven't even tried to experiment with my head/hair yet. I have some pretty significant swelling on the right side of my head where the fluid hasn't fully reabsorbed yet. I honestly think I look like some strange half a Klingon or something like that. I have this big swollen area that sticks out making the side of my head bulge. As for hair, he honestly didn't shave a hole lot at all. As soon as the rest of the dry blood falls off, I can probably do my hair like I did before surgery and no one would be the wiser. The scar has healed great with only a few new "landmarks" that no one but me will probably ever see. Not that hair and scars mean anything to me anymore but... Yes, I've dug out all my hats. Not looking forward to the winter although my head is not reacting to the cold like it did after the first surgery so hopefully it won't be as bad as I thought it would.

Family/Home - John is busy with work and having to shoulder a bit more around the house in my recovery. He's working all the hours he can to try to make up for the 6 days he had to go with no pay while we were up in Minnesota. It's not helping that our son is taking a reversal and not wanting to even do what he is supposed to. Not sure whether he's just stressed out or what but he has really not been helping matters around here much. Hopefully, it's just a phase and he straightens up soon. *Sigh*

On another note, we got the refinance loan on our house. We will actually close next week. It will be a really good deal for us since it will now be a fixed loan, we'll knock 7 years off of our loan, and get cash back to replace our kitchen floor and some other home improvement things that need to be done (Some are true necessity or there will end up be structural issues arise).

Well, I guess that's the update for now. I'll try to do another update after I talk to the oncologist.

Huggles

Back to the Monthly Updates

...or at least I'm hoping that's the plan. It's been a crazy few months but let's hope we're back into normal mode soon.

• I am 2 years and 1 month past the partial resection of my grade three brain tumor. (I can't believe I missed writing a post on the 2 year surgi-versary!!!)
• It has been almost 22 months since I completed external beam radiation.
• I have been seizure free for 13.5 months.
• It has been 3 years since I was hit in the face with a baseball that led to the early discovery of my brain tumor approximately a month later.

Medically - My last MRI showed no change and this is the best thing that brain cancer patients can hear at each MRI. I will be seeing my Neurologist again in September and I'm guessing we'll schedule my MRI for shortly after. It will be a nice and comfortable four months between scans. Hopefully, we'll be able to stay at that for a good long time. I have not had issues with headaches for several months now and I am as healthy as any "normal" 31 year old. (Sorry, that's kind of an inside joke that I share with my Radiation Oncologist. Long story and I can't remember if I told it before or not. Maybe it will be an entry another time.)

I continue to work my way off of the Adderrall (med for my focus issues). We are looking to drop it one more level next time I am there for a med check. I'm thinking at the rate I've gone, there should be no issues being completely off of it by the end of the year. YAY!!! One less med to take every day. (Not that I take many that I HAVE to have each day but one less all the same. LOL)

Emotionally - The last few months have been stressful but nothing that is overbearing. May and June were very stressful with John's hernia surgery and now it's just very busy getting ready for our vacation. Why is vacation planning always such a headache? The most stressful part of it all is the anxiety that came along with John's surgery. Although it was a minor procedure, anxiety always follows for me. That's just the way I am. However, we have figured out some important things in the category of my anxiety so hopefully now that we know about it, I'll be able to handle it better.

Ok, not sure why that one sounds so off but...

Mentally - My focus and mental stamina has improved a lot just over the past few months. I'm not sure where the sudden change has come in but it's been noticeable to me. I'm a lot less "reluctant" to start a mental task now and can stay on it longer so it's not as much of a pain to work on now. I think I'm back to normal in that respect.

Physically - My physical strength and stamina also continue to improve. I haven't attempted to go back to my wii yet because I've been physically busy doing many other things to get ready for vacation and my father-n-law visiting when we return home. However, back in June at one of the Relay For Life that I attended, I walked what ended up being 8 miles from 6 AM - 3 PM. Now it wasn't all at one time but it was still done in a 9 hour time frame. It's not to say I couldn't have done it more at once, but I had no incentive to and had people to talk to all night anyway. :)

The hair on top is at an aggravating length right now. It's long enough it will no longer curl and it's too short to pull back into a pony tail (it falls right out the first time I turn my head). If I didn't need to pull my hair back in the summer, I could probably still cover it sufficiently with the side hair but that is all back in the tail when it is up. Therefore, if you see me in a hat or headband, it's not because of a problem, just because it covers. Besides, I don't want to get a sunburn on my head so a hat is good protection.

Work - Work has not been near as stressful of late as projects have slowed down quite a bit. There have been more and more tasks related to the site closure but they are not too hard other than the reminder that the company that many people have grown to love will be shutting down soon. It's weird looking into certain areas and seeing whole lines gone. I think that's when it really starts hitting that our good little company will be taken away soon. I'm guessing that I will be there until February or March as I will be one of the last ones to go. All the servers and computers will have to be taken down and "disposed of" before I'll be able to leave. Then I guess I will be looking a little harder at the next steps depending on what I choose to do with the unemployment assistance. I've tossed around several ideas of how I will handle the time between my job ending and the training for taxes starting. I think I will make the final decisions during that time.

Home/Family - Well, this morning we finished packing and are traveling down the road right now towards South Carolina... the first destination of our vacation. Here we will visit with some of John's family that I've talked to online but never have had the chance to meet. I'm pretty excited about it. Then we will be off to Disney for 6 days, Universal Studios to see the Harry Potter theme Park, Discovery Cove to swim with the dolphins, Aquatica/SeaWorld, Busch Gardens, and finally to Panama City in Florida to visit with one of my cousins and her hubby. It will be a truly amazing trip and we are all looking forward to it!!!

John is doing much better since his hernia surgery. He is pretty much back to the way he was other than taking it a bit easier when lifting things because he doesn't want to find out he has one on the other side as well. Not something he hopes to repeat any time soon even if the procedure went VERY well for him. Besides, he's been having his back flare up again anyway so not lifting is a good thing for that too.

Relay For Life was a fairly good success for my team. We made a good amount for the American Cancer Society and therefore continue to help with the strive for a cure. The event was rained "in" after we had been there about 3 hours so we did lose out on some of the on-site fundraisers because they were things that could not be easily moved inside. As much fun as I have with Relay, I have decided that next year, I am just going to join a team instead of being a captain. It will take a lot of stress off of me and allow me to enjoy the event a little more instead of running my tail off the whole time! I do want to send a big THANK YOU to all of those that supported my team and I by making donations. We are nothing without your support!!!

My son will be starting school a week after we get back home. I can't believe he is going into the 8th grade. YIKES!!! Where has the time gone?!?!?! I think he is actually looking forward to it.

Other than having stayed busy with vacation planning, my grandma being in and out of the hospital/nursing home a few times, and just plain summer craziness, I don't think there's been a lot else going on.

Well, the laptop is getting hot on my lap and I'm not sure it's a wise idea to be doing this in the car anyway so I'm going to wrap this up. I'm not sure if I remember how to post pictures directly to this or not but I'll be posting pictures as often as I can. :)

Yippee for 17 days of vacation!!!!

John Is Back To Work

Sorry I'm so delayed in sending out this update. It has been a crazy several days so there has not been much time for updating.

John and I went to his hernia surgery follow-up appointment on Friday and the doctor was pleased with his progress if not quite a bit surprised. John was doing very well by this point and honestly you wouldn't know he had just had surgery a bit over a week prior. He said everything looks great and that he could return to work whenever he was ready. He told us the steri-strips should come off in the next week and that he should just not lift over 20 pounds for the next two weeks (three weeks post surgery).

On Sunday, two of the six steri-strips came loose and were removed. The incision looks great and is healed quite well.

He did return to work on Monday and felt good for most of the day. He said around 4:00 he started feeling minor discomfort so he sat down for a while to take it slow (this would have been a normal 8 hour day but they work 9 hour days so I think going 8 hours is pretty good). He had some heat rash around the incision when he came home and ended up removing the remaining four steri-strips. The incision was between 1 and 1.5 inches in length and the entire thing looks very good with minor scabbing at this point.

Outside of John returning to work, we had a Relay For Life garage sale on Thursday, Friday, and Saturday. We had a great turnout and made over $450! Relay For Life is this Friday so we're all busy getting ready for that. There has also been an attack of ill animals over the past week (my mom and dad's new puppy had an infection, their cat had an allergic reaction to his distemper shot, and we had a momma cat try to drown her kittens in a rain storm) and my Grandma has been in the hospital with a broken pelvic bone and now MRSA. Needless, to say, it's been crazy of late.

I will try hard to update next week after Relay is all over.

It's Not March so... Update...

About to get busy again so updates may be even more scattered than normal...

• I am exactly 22 months past the partial resection of my grade three brain tumor. (I believe I was on the phone talking to my boss about this time 22 months ago. LOL)
  
• It has been 18 months since I completed external beam radiation.
• It has been 10 months since my complex partial seizure and have been seizure free since.
  
• It has been 2 years and 8 months since my brain tumor was discovered accidentally.
  

Medically - There's been no major changes on the medical front which is a welcome change of pace from the last 3 years. My next MRI will be in May and when it comes back stable, I'm guessing we'll do another 4 month or possibly even 6. We'll just have to wait and see.

There is actually one thing going on and that is that I'm trying to work my way off of the Adderrall that I've been on for the past year and a half for my focus issues. I think I finally have them under control and I'm hoping to be completely off of it before the end of the year. *crosses fingers*

Emotionally - Stress and trouble sleeping caused me some issues a couple of weeks ago but things seem to have leveled off again and I'm back on the level. Work has been stressful but I'm hoping some events that occurred over the past week will help that situation a lot. I'm thinking that will help my stress issues out and keep me in a good spot emotionally.

I've got to work on my short fuse. I'm not one that typically gets ticked off very easily but it has been one of the changes I've noticed the most since I had surgery/radiation. It doesn't matter who or where it is, I really have to fight myself to keep from losing my cool and this is very unlike me. I'm hoping that as the stress levels go down and I'm able to focus more on my well-being and less on the medical side of things, I'll be able to concentrate and focus on this change in my personality. It's probably one of the more frustrating changes I have noticed, even more so than the focus issues I've had and hopefully have overcome.

Mentally - My focus issues have reached a point where I can pretty well control them as long as I am well rested. My focus level is pretty par with what they were prior to surgery/radiation so I feel that is a good sign and thus why we've begun coming off the Adderrall. I know my focus issues may go backwards for a short time after I completely come off of it but I think I'm now up to the challenge and it's not going to be as dramatic of a changes as it was originally.

For the most part, I'm back to a satisfactory mental level again. I feel I am capable of most of the mental tasks I could once do, even if I do take a bit longer to line them up now. The sequencing being one of the things I still struggle with a bit. However, even that is beginning to improve without much physical work on my behalf so it's just a matter of time for it to get back.

I guess what I'm saying is while I still have minor issues, I've reached a point that I am satisfied where I am and I feel it is safe to say I'm as sharp as I ever was.

Physically - I did get back to working out on the Wii but it was with EA Sports Active with the occasional Wiifit. I was through day 12 of the 30 day workout when I began having knee problems and what I think was a mild UTI. Both are now gone but with spring here, I'm needing my workout time to be outside doing yard stuff. So it's still exercise just in a different form.

For those of you wondering, the shorter hair is growing on me and as long as I keep it long enough to put it in a pony, I will probably keep it until the hair on top catches up with it.

Work - While I have vowed to not let things stress me out, I can't deny that things unrelated to my two projects has managed to do it. However, a huge weight was lifted off my shoulders this past week so I'm hoping that will help matters a lot.

Home/Family - Spring is here and that means John is working the longer hours and Saturdays again. Spring is always a bit hectic because there's so much that needs to be done around the house but he has very little time to help. Our son is old enough now to help out a lot but there are some things the two of us just can't do (like getting the lawn mower ready so we can cut the grass that is almost knee high now). We always manage to get it all done even if it's not in the timeframe we hope.

We are also working on our plans for our summer/fall vacation. We will be driving down to Florida the later part of July/Early August. It will be a great trip and we will get to visit with family, go to Disney, Universal, Busch Gardens as well. We are still in the planning stages and will be waiting for the final timeline until after my May MRI but we do know what we want to do and the when is the only TBD.

Perhaps the parts I look forward to the most is meeting some of John's family for the first time, visiting my cousin Polly at their home, and swimming with dolphins at Discovery Cove. The swimming with dolphins will be awesome and it's one of those things I've always wanted to do. I think the only bad part about it will be holding the fish if I have to feed them one. Yuck! For those that don't know about my crazy dislike of fish, I will have to reach as far into my determination as possible to touch any fish they ask me to feed the dolphins. I won't even swim in the ocean because there are fish in there... I have often been heard saying I don't eat it, touch it, or cook it. Although I have started eating some of the less fishy tasting fish. (I have goosebumps just talking about fish. UGH)

I look forward to the adventures that we will be taking on over the next several months. Some big dates will be coming along as well. June 10 will be the two year anniversary of my surgery and cancer diagnosis and the three year mark of my brain tumor diagnosis will be in August. For the first time in almost three years I can honestly say that I'm happy with the direction things are going and I look forward to the next year. Lots of fun things and big landmarks are on the horizon.

Huggles!

The Month in Review... February

I am so far behind on updates it is pathetic. Being busy has its disadvantages but it was quite a month!

• I am almost 21 months past the partial resection of my grade three brain tumor.
• It has been 17 months since I completed external beam radiation.
• It has been 9 months since my complex partial seizure and have been seizure free since.
  
• It has been 2 years and 7 months since my brain tumor was discovered accidentally.

Medically - I did hear from Mayo on the MRI front. They agreed with what the local radiologist said that everything is stable and looks good. The areas of enhancement that they were previously concerned with are still there and stable meaning that chances are good it is radiation necrosis rather than regrowth. Their recommendation is to have a repeat MRI at 4 months which will put us in May. I will be seeing my local neurologist on the 8th so we'll be able to start arrangements for the May MRI at that time.

I have finally gotten over my respiratory infection and I'm feeling relatively good in that respect. Good enough I hope to start up my WiiFit again this week. We'll see how it goes. LOL

There isn't anything else going on medically at the moment so I guess that's a good thing. :)

Emotionally - The past month has been pretty good in the emotional front. Pretty normal actually when you look at it. Most of the emotional issues this month stemmed from school grades, getting stuff ready for a birthday party, work, and just plain being very busy.

Mentally - Things have improved some in the mental category. I seem to be sharper and my endurance is improving even if only a little. I'm successfully managing to keep projects in order thanks to Microsoft Outlook's task manager and my iPhone. I'm really not sure what I'd do without those two tools. Outlook keeps me organized at work and my iPhone keeps my life in general on track.

Otherwise, I'm actually getting things sorted out in the paperwork category again which is a good sign. I have dreaded touching paperwork since I had surgery and it's starting to get the better of me. At least now I am keeping up with the current stuff and will slowly make a dent in the year of overflow that I didn't take care of. *sigh*

Physically - My physical strength has returned quite nicely and I'm very thankful for that. I seem to actually be able to get some things accomplished now beyond just the "must-dos". I may actually get things caught up around here before we go on vacation in August yet. LOL

As I mentioned earlier, I'm hoping to get back into my WiiFit this week. It's not to continue losing weight, I am quite happy with the 72 pounds lost that I am at right now, but I do need to start developing my muscle back and I wouldn't mind toning the areas that have seen the weight loss. If I lose more in the process, it will be an added bonus but this time the exercise is for my health not my weight.

Something else occurred physically this last week and I really apologize for not posting pictures sooner. For the first time since before I was in kindergarten, I cut my hair to just above my shoulders. It is so hard getting used to short hair but it is growing on me. It was a long overdue transition. The hair I had lost with radiation was getting long and it was all coming in curly. The hair I didn't lose was straight and not very appealing. Therefore, when the curly hair finally got to a length I could handle... well you see the result. It really looks much better and I'm glad I did it. :)
For the frequently asked questions... Yes it is natural curl and it has always been that way it was just too long to stand out. My hubby says it looks flirty and/or that I look like Shirley Temple (which I think he means as a compliment). LOL My son didn't even notice it until my husband pointed it out.

Work - I'm still very busy at work with the two projects I'm leading and the plant closure. I've vowed not to let it stress me out any further. I'll work on it when I mentally can and I'm not going to stress over what doesn't get done when I want it done. It will get done, that's what's important. I've also come to accept with my projects that if the others don't want to do the testing required to make sure they are ready for the upgrade, it will be their issue to deal with when the time comes. It's no skin off my back. I'm doing my best to convince them of the importance of the project and if they don't want to work on it... I can't force them.

However, a huge weight was lifted off my shoulders a few weeks ago. I finally told my boss that I would not be staying at my company when the plant shuts down. I was offered a position and had it been 3 years ago, I would have taken it in a heartbeat but alas, life has changed and I'm looking forward to the opportunities that will be available to me after the plant does close down. What is my plan? I'm going to take training to learn to do taxes. Work four months of the year to make what I need to in order to cover medical expenses. I will also do freelance computer work and motivational speaking. Most importantly, I'll have time to spend with my son during the summer and be able to enjoy the things I currently can't because of working full-time. I really look forward to it and while it will be a struggle losing my steady paycheck, it will be worth it in the end.

I'd like to publicly thank my boss for understanding my position in making the decision not to stay. I really appreciate him going to bat for me and ensuring I had a position to choose if I wanted it. He was more than understanding of my reasons and I really appreciate that. Thanks, Jim!

Home/Family - Well, my son had a nice 13th birthday and last weekend we had a birthday bash for him. I had 9 teenagers in my house for a party and then 6 teenage boys all night. Needless to say, it was quite the weekend. Overall they were all pretty good even if we all were exhausted come Sunday afternoon. There were only a few minor casualties but nothing that can't be fixed for under $10. The cake was awesome and I thank Ashley for the awesome Wii cake. I'll post some pictures of that a bit later.

We continue to work on some of the house rescue that we began at Christmas. You wouldn't believe how much of a toll two years of "coasting" on things can take on your house. We're making progress, slow and sure.

I feel like there's so much more that needs to be put here but for the life of me I can't think of it right now. *sigh* Darn memory anyway.

Well, that's my update for now. Maybe now that the crazy month of February is over, I'll be able to post more often. (yeah right)

The Month In Review... January

Ok, so I'm five days behind...

• I am 19 months past the partial resection of my grade three brain tumor.
• It has been 15 months since I completed external beam radiation.
• It has been 7 months since my complex partial seizure and I am happily behind the wheel again!
• It has been 2 years and 5 months since my brain tumor was discovered accidentally.

Medically - My last MRI showed no change so we are in good position there. I am waiting to hear back from Mayo still on when we should schedule my next MRI. I will probably give them a call in the next day or so to make sure they did receive my scans and if they have had the opportunity to review them. I'm not exactly sure how all this is going to work right now but I do know that I get copies of whatever they send to my doctor and I have not received anything so I'm guessing nothing has gone out yet. I see my Neurologist again the first part of March so I should at least be able to get the copy of my MRI report from him that day.

I've also been fighting a respiratory infection. It started as sinus and borderline bronchitis back before Christmas and has steadily gotten better, then worse, then better, then worse... I did go to the doctor and I'm on an antibiotic so that at least it's loosened up again and not just the hacking cough it was. However, it runs out on Sunday and I'm still getting episodes where I am struggling to breathe because of the coughing. Might have to end up going back for round two.

At this point, I think that's all to report on the medical front.

Emotionally - Other than just extremely stressed, I haven't been doing too bad. I've had a few instances where I just blow up at everyone but it's usually after I've had one of those days where you just can't see the light at the end of the proverbial tunnel. It seems like my good days are pretty normal but I am getting more and more bad days because of being "snowed under". However, it's mainly just life and a combination of many things coming to a head at once. Work is nuts, things at home is nuts, and basically just everything is nuts. LOL

Unfortunately, the respiratory issues has prevented me from getting into my workout routine again so I'm not getting my typical outlet either. I'm sure when I get over this and get back into it, the emotions will simmer down again and the stress will raise my blood pressure 20-30 points less.

Mentally - Yes, I'm mental... LOL Actually, it's really hard to gauge how I'm doing mentally. I've been pushing myself hard in the mental category at work so by the time I get home, I'm basically a mental lump. Thus why you haven't seen many updates. It seems like my ability to put two or three words into a single sentence disappears around noon each day. Thus why I'm scheduling all of the meetings that I have to be alert in, before noon and I schedule mundane tasks in the afternoon. You know, even the tasks the the twit down the hall from you can do. :)

This mental exhaustion is also the cause of a lot of my emotional anger. I need that down time and I don't usually get it, especially right now since there are a lot of tasks going on all day at work related to our products being moved. (I could go into details but I'd just bore you all) Anyway, I'm to the point that it's almost necessary for me to spend two days of the week at home working so that I can get that down time. Unfortunately, I'm not always able to schedule them on the Tuesday and Thursday that would make the most sense. I can get through a whole week or even four days but it's a huge struggle to do so and most of the time that last day is lost to me because I remember very little of what I did in my zombie-like state. (Therefore, to those that I work with, if you need me to do something challenging, either catch me at the beginning of the week or make sure it's after I spent a day working from home!)

Physically - Exhausted, frustrated at not being able to get back into a workout routine, exhausted, still losing weight for no reason, exhausted, ready to quit coughing up a lung for several hours each day, did I mention exhausted?

Seriously though, I have had decent energy despite the respiratory issues. It just hasn't been energy to do anything outside of the things that MUST be done. Not only that but I've had both my knee and ankle act up over the past couple of weeks and that slows me down (prevents me from working out) as well. Gotta love what being a catcher does to you!!! However, if I can get 10-12 hours of sleep the night before and take breaks every 30 minutes or so, I can push myself and get things done that need to be. However, if I go over that 30 minute mark, the coughing starts and I'm zapped. I have the little routine going. Drink water, do inhaler, work for 15, drink water, work for 15, drink water in room with humidifier, do nothing strenuous for an hour, repeat. :)

Work - The chaos continues! Just as I feared when I took on the two projects at work, the plant closure project is taking up a good portion of my time. Again I won't bore you with the details but it involves a lot of modifications to rights, installations, and various other tasks as they run into issues. Yes, some of you that work in computers are probably saying, "so what, that's not a big issue" but when you don't have control over your own domain it becomes quite the headache. I choose not to say anymore at this point but just suffice to say that probably 40% of my time right now is handling these types of things. Really, right now, it's a lot like working about three full-time jobs. (No wonder I'm mentally exhausted, eh?) I'm a Tech over the site I'm at, handling Project Lead duties, and then being a "Consultant" for other areas. I'm learning a lot right now, some of which I could do without learning, but it's quite interesting to say the least.

Home/Family - Let's see... John did get my bathroom floor finished before Christmas so that was a really good thing. We need to go through and make some minor adjustments to it but nothing serious. We have also begun the tackling of "the room" since Christmas.

What is "the room"? It is the room that was going to become the baby's room and was temporary storage for all the baby stuff I had kept from my son and other things that we weren't ready to find a home for yet. Some would call it my "dungeon". Basically it was floor to ceiling with stuff that needed to be sorted through and most of it given away. Yes, it should have probably been tackled in 2007 after we stopped our journey to conceive but 2007 also began the journey of brain tumor, surgery, radiation so it just never got moving. Last year, I tried several times to start working in it but it would never fail that after 20 minutes or so I'd run into something that would set me off and I'd have to walk away from it.

For those that do not know the story of the journey to conceive, John and I tried for almost two years to have another child. We had declared that in December 2007, we would stop trying whether we succeeded or not. I was ready for that and mentally prepared to walk away from it. However, it was August of 2007 that I was diagnosed with the brain tumor. Not knowing what we were dealing with or what the future held, we agreed that our journey was over. Instead of trying to conceive, we found ourselves trying not to. The struggle I have is "what if I didn't find out about the tumor until 2008? Would we have conceived during those last few months?" These are the questions that arise every time I tried to close the final chapter of our conception journey. While I was ready to accept it was not meant to be if it didn't happen at the end of 2007, I wasn't ready to accept it in August.

However, the room is nearly complete, most of the items have been given away, and the room is slowly taking shape as our game room. When it is done, I think I can finally close the book on the baby we never had. :)

Speaking of babies, my baby boy is going to be a teenager next week. YIKES!!! I'm feeling a bit old. LOL Actually, this is one of the reasons I had to get over the baby issue and get that room cleaned up. He wants to have a wii party with his classmates from school and then have the boys spend the night. Needless to say, I want that room to a point that they can spend most of their time in there. Luckily, we have a few more weeks because his party won't be until near the end of the month due to Valentine's Day and a 4H conference he is going to. 13!!!!

In other family news, I am happy to say that I'm learning what my husband looks like again. :) He has been home on time (mostly) since returning after the holiday. YAY!

I will choose not to get into the trouble that has been brewing with my husband's family. He hasn't confronted them yet, so I'm not going to say anything here. Let's just say that two of his family members are on very thin ice with he and I right now. (It's no one that would be reading this so don't worry.)

Play - What's that? Ok, seriously, we haven't really done a whole lot in the arena of "play" lately. I've been too sick to dance and we've been busy on the house so really the closest thing we get to play recently is Facebook, the computer, and with me Plano Hogwarts. I have been spending quite a bit of time on Facebook and Plano Hogwarts. Plano Hogwarts is like a second family to me and I love being there. Besides, I'm the Head of Hufflepuff so I have to be around and help out the newer members. Really I love it there. Facebook has been a very fitting place for me to relieve frustrations and stress over the last several weeks. I have a few games I play that don't really require a lot of brain power and they are just relaxing in several ways. I guess you can give Facebook credit for keeping me relatively calm and with as few anger spells as I've had. An evening messing around on it, puts my blood pressure back where it should be. :P

Relay - Well, I've had two wonderful speaking opportunities over the past month at Relay Kick-offs in our area. I spoke at the PrairieLand Youth Relay and my own Logan County Relay about being a survivor and what Relay means to me. I hope I did a good job and I am looking forward to a time when I can do more of these speaking engagements. I love doing motivational speaking and talking about what it takes to be a survivor. I really think it's my purpose in life... to share my journey and give others hope. Opportunities through the end of this year will be limited based on work and other activities but soon things will be more flexible. If you want a speaker matching my description, it can't hurt to let me know and I'll see if I can work you in.

I really need to get working on Relay stuff for this year. I have to send out team letters, send out personal letters for donations, have a team meeting to decide on name, theme, and activities, etc. There just never seems to be enough brain power in the day to do it all. Notice, I no longer say time, it's brain power. I waste a lot of time trying to get my brain power back in line so it's not time that is my issue. :)

Ok, I think I've rambled enough for one day. Huggles.

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 Months in Review... December+

Now that we are nearly through December, I have realized that I didn't put a month in review for November. I do apologize for that. So, I guess I will do a months in review for December now and maybe you will be treated with an additional update at the end of the year. :)

• I am 18 months past the partial resection of my grade three brain tumor.
• It has been 14 months since I completed external beam radiation.
• It has been 6 months since my complex partial seizure and I am happily behind the wheel again!
• It has been 2 years and 4 months since my brain tumor was discovered accidentally.

Medically - I am still waiting for the MRI that was supposed to be scheduled two plus weeks ago to get scheduled. Apparently my insurance company is being a pain and didn't want to accept the orders for the MRI that Mayo sent so I had to see my Neurologist here locally first. Pretty stupid in my opinion since they will have to be paying for the extra unnecessary visit that lasted about five minutes and was basically. "They want you to have another MRI. I can agree with that. Are you still on the following medications? Ok, I'll have the nurse get this scheduled." While this also meant it cost me $30 that was not necessary, it's going to cost them a lot more. Insurance companies can be a pain.

On the positive side, I've been officially cleared to drive again!!! It's great to be back behind the wheel! It's been so nice to have my "freedom" back. It's probably a good thing too because this past week would have been nuts without it.

In the final medical portion of the update... I am fighting sinus issues and what is trying to become bronchitis. It's the typical yearly battle of my need to prepare for Christmas and my bodies need to fight being sick. It just wouldn't be Christmas without me hacking up a lung and unable to breathe!!! LOL

Emotionally - Mostly I've just been overwhelmed with things this past few months. Lots of things going on at work, getting ready for Christmas, and just day to day struggles has not made me a pretty sight but I've been able to keep relatively stable in the emotional front. Not sure if my boys would agree or not but I feel I've held up fairly well. The one major down I had was when it was looking like I might not get my license back when I was able because of some delays in paperwork but that worked out in the end and I'm in a much better mind thanks to it.

Mentally - I think at least some of my sharpness is beginning to return. I'm still having memory issues but I think those will never go away. Otherwise, some of my mental sharpness has returned although I fatigue a lot easier and I'm usually only able to focus on a task for about an hour before I have to remove myself from it to get my focus back. However, that is much better than the ten minutes or so I was at previously. I guess it's an improvement. :)

Physically - The sinus issues are zapping my energy and physically I feel like crap. Yesterday, I walked from one end of the house to the other and had to do my inhaler because it has my reactive airways aggravated. Luckily, harvest is nearing the end so John should be home more often really soon. This will help me A LOT! Of course, I'm not off until the 4th of January so that should help me recoup as well and hopefully start the new year with renewed energy. The plan is to work around the house and rest a lot so hopefully the efforts will pay off in the end. John will also be home with us after Christmas until the first of the year.

Work - On a good note, John has had a change in his employer sponsored health insurance and the plan will be really good for us when my plant closes down. It will be a lot less out of our pocket each year so if I do go the part-time route, I will have to work even less than originally anticipated. This, of course, is very good if I should have to go on temodar (chemo) if my MRI shows definite regrowth. It also means that I need to put less back in preparation for medical costs going into the new year. His plan will save us thousands of dollars in the long term.

My projects at work are doing fairly well so far. I had a very good kick-off meeting for the larger project that I was concerned about. I will be working with a very good group and they seemed to like some of my ideas and the spreadsheet I created for the project has been adopted by the entire project so it feels good that they trust my abilities enough to see that it was a near perfect fit for what we are doing.

Family - We are working on getting things ready for Christmas. We have the tree half way up (it's up but not decorated) and all the presents we've bought are wrapped except for my son's. I still have a bit of shopping to do but it shouldn't take that long to finish what I have.

Harvest is finally starting to slow down so it won't be long before I get my hubby back. :)

The good news is that he's almost finished the floor in my bathroom so maybe I'll have my bathroom back as well. LOL We've had to share my son's bathroom for the last month because of a leak in our toilet that turned into a mess so we decided to replace the bathroom floor for the second time. This time will be the final for a long time. It looks really nice so far and it's a much better setup than the cheap tiles we put in there last time. For those that don't know, the reason we had the cheap tiles in there in the first place is because our Master Bathroom had carpet in it. Carpet just doesn't work well in a bathroom! Therefore, we are now replacing the quick, cheap carpet replacement with a nicer and more permanent solution.

My son is still struggling with some things but I think he is finally starting to understand that school is important even if he doesn't realize it at the present. Hopefully this new found attitude will carry him through in the new year and his grades and attitude will improve.

Well, my sinus pressure is making my eyes water and difficult to think/see so I'm going to wrap this up a few categories short. I wish everyone and their families a very Merry Christmas and a Happy Holidays!!!

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!!!