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 - 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 While We are Waiting

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

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

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

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

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

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

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

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

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

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

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

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

Feeling Good; ROund Two Chemo

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

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

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

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

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

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

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

Huggles,

ROUnd one of Temodar Chemo Complete

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

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

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

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