I Almost Forgot About Relay

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

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

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

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

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

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

Update While We are Waiting

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

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

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

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

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

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

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

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

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

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

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

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

Feeling Good; ROund Two Chemo

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

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

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

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

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

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

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

Huggles,

ROUnd one of Temodar Chemo Complete

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

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

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

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

A Very Long Overdue Update

I'm blaming the lack of updates on anesthesia.

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

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

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

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

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

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

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

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

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

Huggles

Amy's status

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

Amy's status

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

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

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

A Quick Update From Me

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

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

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

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

huggles,

Amy

Amy's status

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

Amy's status

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

Update Prior to Surgery Four

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

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

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

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

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

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

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

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

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

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

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

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

Huggles,
-- Amy

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

What A Pain That Was!!!

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

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

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

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

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

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

Another Surgery At MAYO Yesterday

This would have originally been known as the one month update but since all heck broke loose here is the actual update.

Ok, sorry everyone I am way behind. Last week I had an area of swelling over my incision site that increased in size by double and didn't seem to be improving. I contacted my NeuroSurgeon and did not hear back from him until Wednesday. Wed morning I woke up vomiting to the point that I could not even keep water down. John took me to the ER, where a CT scan was done. They found an area of Hydrocephalus (fluid in they brain) and that is what is causing the nausea and swelling (the fluid is leaking in through the weakest point at the cranial flap and thus causing the swelling).

They took me in around noon on Friday to have the shunt put in. It was a rush job so sorry I didn't have time to notify everyone. It went really well and other than a couple of incision pains I'm feeling pretty good. I got up and started walking this morning and it is going pretty well. I able to eat and keep it down which is a good thing. Haven't been able to do that since Wednesday. Yay, food!!! I will be here until Sunday or Monday depending on when the infection cultures finish. The wanted to ensure that the bulge hadn't developed any infection with all of that sitting up there like that. They don't believe there is and all of the initial tests have come back negative so we are hoping the cultures come back negative and we can move forward again. (We hope to hear on Sunday so we can drive home on Monday since my oncology appointment is scheduled for Tuesday). I'd like to get established with him even if it's not going to mean a few more weeks or months before I can start now.

Well, I think that's everything. Now that I don't have to remain at a 30 degree angle or stop several times to throw up, I should be able to keep everyone posted.

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

Lots of Good Things Today

Well, I think this has turned into a very good day for me despite having a rough pain night last night.

Last night I didn't sleep well at all thanks to some left side extremity pain. The steroids have finally done what I knew they would in that they have weakened the cartlidge in my knee. Steroids are bad enough on joints without having bad joints going into it so I should have known that no amount of gentle exercising and rest on them would keep them from weakening. I officially can no longer climb stairs. No big deal I guess. I got through that part last time and it doesn't seem to be as bad this time. YAY!!! Anyway, the weakening has me walking weird which caused me a lot of pain last night. Only two hours worth so it could have been worse. I've handled worse just hate when it happens at midnight or so. UGH!!!

Anyway, woke up this morning starving and took my meds, then back to nap. Got lots of stuff done after I got up though. Got some important phone calls made. Got news that our house refi went through. Major YAY!!! Got my local oncologist called for a consult so we can start making arrangements for my chemo treatment. (Nov. 30) Got what should be my final date on the steroids (Nov. 19th) Another MAJOR YAY!!! The timing seems to fit pretty good. I should be off the steroids and feeling better by Thanksgiving, won't start my first round of chemo until after Thanksgiving, and the timing of the second round will put it after Christmas so I should feel good for all the holidays. :) Also, I think the timing of the second round of chemo will allow me to put off returning to work until after the first of the year, which is good in that respect too. Then I won't be the only one at work over Christmas shutdown and can start fresh on the new year.

Ok, I think it's time for my afternoon nap now. Steroid issues are starting to minimize so that's a good thing (other than the knees of course but that will still be several weeks I'm sure until things come back to normal).

Thank you all for your continued thoughts and prayers. Got a good week planned and I look forward to seeing some of my friends at work tomorrow and get these staples out!!! YAY!!!

Huggles to all,

My Angel In The Night

I have tossed this post around quite a bit since I had surgery but never really sat down to type it. I have not talked much in my updates about the day of surgery. (Mainly because there are just a few points that stand out and I don't remember much of the rest of it.) What stands out? The horrible nausea I had for the first time in my life after being under anesthesia, the pain level higher than I've ever felt it, and my angel in the night. :)

I'm not sure if it's the anesthesia protocol they used, the fact they had me take some of my medications that morning that I typically take with food to keep my stomach from being upset, or the narcotics they gave me during/after surgery but I have never felt more lousy in my life than in the recovery room and the first several hours in the PACU. I was not only feeling very sick but I was in an 8-10 pain scale and anyone that knows me, knows I had to be in A LOT of pain to hit that. (I don't think I'd ever had above a 5 in the past as I have a very high pain tolerance.) The fact I started coughing within just minutes, did not help matters because that aggravated both conditions as well. Do you know how hard it is to cough when you have a very dry mouth that tastes horrible because of the tube that had previously been down your throat and the fact you had been sick? It's not easy and just makes things worse. Of course, the more I asked for ice chips or water, the less I could get it. They don't want you getting sick even though you know in your heart that if they would just let you have something in your stomach to make it easier to get sick, you would almost instantly feel better. Or at least that's how it works for me. I'm much rather get sick with something in my stomach than nothing but acid. That's the worst feeling in the world.

Anyway, I got out of surgery around noon and was moved to PACU where I was when my hubby John was able to see me for the first time around 2. I spent the next several hours asking for something for the nausea, while they gave me Fentanyl for the pain. Narcotics never have done anything for me for pain. I would rather have a couple of Extra Strength Tylenol than all the narcotics in the world. Narcotics take away my primary method of pain control... my mind. Leave me be to my Tylenol and deep breathing and I won't have half the pain that someone on high doses of narcotics will have. Anyway, I couldn't get that through to the nurse so... I was stuck focusing my mind on not upchucking on the doctors and letting my pain skyrocket out of control. Supposedly, they were waiting for an order to get me some more nausea meds. Unfortunately, the narcotics was keeping me from thinking clearly and just demanding that they give me a cup of water and two Tylenol. What's the harm if I try it and I get sick on it? I'm sick anyway so just do it!!!

Finally, around 8 PM they gave me something for my nausea and my Night Angel started his shift. I could have kissed him when I asked him for some ice chips and two Tylenol and he said that he could do it. Within 30 minutes, not only was my nausea under control but my pain level was down to a manageable level. It did take a Tramadol as well because let's face it, Tylenol doesn't exactly work very quickly but was quickly under control once I was able to get someone to listen to what I needed.

He knew I had been through a rough day and I had told him about my neck and back problems. He was in there frequently checking on my position, moving me, or giving me a neck massage. He was the only nurse throughout my stay that was right on top of my Tylenol every 6 hours so that it didn't wear off. I guess nurses just aren't used to patients that aren't on high doses of narcotics and doesn't understand that when you are doing nothing but an over the counter pain reliever you have to keep it in your system.

When John left me around 8 the night of surgery, I was in a lot of pain and I think he was very worried because he had never seen me like that. By the time he got there the next morning, I was all smiles and feeling great.

Anyway, my Angel took great care of me that night and was quick to get me up the next morning to relieve the rest of my neck and back pain. Tyler, you were truly my Angel in the Night. Thank you. *All smiles from your biggest pain on October 26, 2010*

Looking Ahead Into Next Week

Here the weekend has just started and I'm already looking ahead into next week. Seems kind of backwards, I know. I just know from experience with my first surgery that the weekends are going to be boring. John wants to be home and enjoy the weekend when I'd rather be out doing something. *sigh* Oh well, can't win them all I guess. I will admit that I'm a bit overstimulated from the week. I remember this from my first recovery as well. There's a firm line between having too much activity going on in the house and not enough. Since I only had about half a day to myself all last week, I didn't get that total down-time that I really needed. You know, no TV, no one moving around, just me and my mind and nothing. Maybe it isn't possible to know what I'm talking about. It seems to be a brain thing. I hear comments about over-stimulation from background noise and the like from my brain support groups and how it tires you more than anything else you can do. I think that's what I'm hitting going into the afternoon today.

However, looking into next week. I will have an entire day to myself on Monday. YAY!!! Tuesday is going to be a busy day and I'm sure I'll crash in the afternoon. I am hoping to stop by work at around 8 AM Tuesday morning to visit a bit. I then have an appointment to have my staples removed at 9:30 AM. If I can get my chiropractor to see me, I hope to see him yet that morning to try to take care of my neck and back issues. I think I'm ready for him if he thinks he's ready to work on me. I will be calling you Monday, Dr. D!!! :) Hopefully this will take care of some of my sleeping issues and let me sleep a bit better at night. Then I will finally make the trek over to see my Grandma and rest up a bit before we head home. I know she's anxious to see me but we really haven't been to town when we can get over there.

Wednesday and Friday, I'll get to be home to myself again. I guess my little supervisor will be here Thursday since he doesn't have school for Veteran's Day. Should be a healthy mix of stimulation for the week.

I guess the final trick I have to figure out is when I'm going to manage to get in to have a tooth fixed where it's not going to kill me head wise before I start on my Temodar (chemo). I have a tooth that has been nagging me for months and has had to be put aside for weeks because of me being sick. I'd love to take care of it before I start my first round to Temodar but I guess we'll have to wait and see. I will be calling a local oncologist this week to try to arrange an appointment to discuss my protocol. I'm aiming to start it around the first of December (I think I should be entirely off the steroid by then) to put it between the holidays so that hopefully I'm feeling decent for the holidays. It's usually a fairly well tolerated chemo so I'm thinking I'll be good regardless of when I go on it but why take chances, right? It would be a 5 day oral chemo with 23 days off between for 6 months before we reevaluate it. Of course, I am waiting to get the official protocol from my Neuro-Oncologist at Mayo as well so that I have all the facts before me before I call them. I should be getting it this week.

Therefore, this will be a week of getting some of the paperwork side of things done and figuring out where I can swap budget money to pay for this last one. Temodar is not going to be cheap on my insurance and with my pending end of employment, I'm going to get double-nailed with my insurance. UGH.

Well, that's enough for now. Recovery seems to be going well and other than the darn coughing still, I'm maintaining my strength, resting as much as I can, and overall not feeling too bad all things considering. I'm down to just 40 MG of Prednisone (steroid) now so hopefully even the nagging cough will wean its way down soon.

Huggles to all,

A Different Kind of Request

This is going to be a little different kind of update/request today. I am doing great and recovering very well at home. I feel good, I'm getting lots of rest, and I'm keeping just busy enough that I'm not getting bored... much.

However, yesterday a very good friend and fellow brain tumor sufferer had a huge scare. Please keep Nyckie Gorman in your thoughts and prayers as she deals with some issues causing some left side paralysis from her scar tissue, tumor, whatever. Her and I have very similar stories and she has helped me through a lot. Not sure all the details yet but please keep her in your thoughts for full recovery and that her doctors are able to figure what is going on quickly.

Thank you everyone for your continued thoughts and prayers for both of us.

huggles,

Home Never Felt So Good

Well, we made it home around 8 PM last night and it was nice to be home and our family reunited. John and I spent a good deal of the night making me feel human again by cleaning up all the dried gunk on my head and hair and then we both had a great night's sleep. It was so nice to wake up in a familiar environment, in my own bed, and doing my own thing. Nothing beats being home!!!

John will be home with me through Tuesday and then we'll see how I'm doing from there to determine the rest of the week's plan. I will have to go have my staples removed one day next week and will need to find an oncologist to administer my chemo to me here locally so there's still a lot to do in the next few weeks.

Other than being very stiff from the long drive yesterday, I'm in good shape, feel good, and mentally on the ball. Gonna work with the boys to get everything unpacked today and get settled into the routine we'll have for the next few weeks. Visitors are welcome so if you are bored, come on by. If you are squeamish, call first so I can cover my head for you.

DO NOT SCROLL DOWN PAST THIS IF YOU ARE SQUEAMISH!!! I am NOT responsible for anyone fainting or passing out by seeing them.Well, I think that's the biggest part of the update for now. I would not scroll down below this point if you are squeamish for there are some pictures that might be too graphic for some.

Many Huggles and love to all

A safe picture to give a bit of buffer room before things a little more graphic: