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:

Heading For Home Sweet Home

We are lounging in the hotel room for another few but then we are going to hit the road for home. It's a bit later than we originally intended but we both were sleeping so great we got a late start. We're both very ready to be back home in our own beds and I'm ready for my own bathroom so I can clean up properly and get my head back to normal feeling.

The lowered dose in steroids is already making me feel a lot better. I woke up this morning feeling normal instead of like the MIDAS man. granted it had been over 12 hours since my last prednisone at that point but I wasn't expecting to feel that good this morning. I'm hoping that means that the ride home won't be as horrible as I feared.

The oozing on my head appears to have completely stopped. I didn't have any additional in the night so hopefully that is finally under control. My cough is also currently under control which is a big thing. The swelling in my face is minimal which is a surprise to everyone. My face feels full but it's not swollen shut anywhere or anything like that. I like this because it means my vision isn't hindered. My pain is still being managed very well with Tylenol and Tramadol so that is well under control and even then I'm not necessarily taking it because I have to but more because I don't want it to kick in.

Ok, John is heading down for the valet cart so I guess I better wrap this up and put this away so we don't forget it.

Will be seeing you all soon. I will be home all this week with John at least some of the time and possibly my mom some of it, depending on how I am feeling. I will have some appointments in town the next week so I might be making some surprise visits while we are there.

Tomorrow I will post my Halloween costume and some more pictures for everyone.

Huggles and please continue the prayers for my great recovery. Thank you, God, for all the wonderful friends and family and blessings you have given me. AMEN

The Long Awaited Big Update

Ok, sorry I didn't post this immediately but by the time we got back to the hotel I was tired so I rested. Here's the low-down on what we found out at the doctor today.

• The oozing isn't anything to be concerned with. It's just the build up of swelling that was there working it's way out. The wound itself has sealed nicely. The Neuro Surgeon cleaned it up really well and showed us what we can do to keep it that way. He basically had to unteach us everything we knew about wound treatment from doctors in the past. It looks a lot better now and we've got some nice protection on it to keep it from destroying all the clothes and hats I've got. Meaning I can actually go out in public again and will be able to do my Halloween costume when I get home and finish cleaning it up with a nice shower. mmmmm.
• The official results with the pathology is that there was a lot of scar tissue and necrosis. There was tumor of an undetermined quality being either leftover grade 3 with radiation changes or a grade 4. They aren't really concerned with the actual grade because with where mine currently sits (they removed everything that was there) the treatment is the same either way.
• Based on pathology, I will begin doing Temodar (a "mild" chemotherapy that is highly effective in the brain) when I feel I am ready. I will do the treatment at home locally with the guidance of my Neuro Oncologist at Mayo. I will be on a 6 month protocol to start with 5 days on then 23 off. This is pretty standard protocol. We'll make decisions on whether to keep on it at that time rather than trying to predict the future. If the Temodar doesn't seem to do what we hope (keep anything from changing in MRIs) then there are several other options at our disposal in which we will discuss at that time. They are hopeful at this time that we should NOT have to do anything further from this currently. (In other words, they feel it resembles the grade three that's been there all along with radiation change not a fast moving grade four, which is very good!)
• I will begin the steroid taper today and with a little luck will be off of it by Thanksgiving. YAY!!!

All it all, it was what we expected to hear and what we were prepared to undertake. Might be some rough days ahead with steroid transition and then Temodar but Temodar is usually easily tolerated and he said it's one of those that motivation and determination really does affect how you let it effect you. Therefore, he felt it shouldn't effect my life in any way other than maybe making me fatigue more easily, taking a couple of more meds, and being more careful when around those that are sick... all of which I should be doing anyway.

That's the update. Things are good, I'm looking forward to going to eat here in an hour or so and then hopefully a ooze free sleep tonight. Home sweet home tomorrow!!! AHHHHHH my own bed!!!!

Love and Huggles all. All of our prayers has done it again!

-- Amy - Fight Like a Girl!!!

Staples Oozing Hate Feeling Helpless

Well, this will not be a super long update but I figured I better send something out today since things are changing a bit and I just need to vent a bit as well.

We stayed in the hotel last night and it went ok. They goofed on us and we ended up with two double beds instead of a single queen, which isn't a big deal other than the queen rooms had a really nice recliner that I would love to be on right now. The trade off being that we were able to have twice as many pillows so that made arranging sleeping positions easier... yeah right. Basically, long story short, I've had A LOT of oozing issues with my staples since being released from the hospital. I think it was a combination of things. I didn't have to cover my head while walking around the hospital because people expect you to look like a walking horror picture. You can't exactly do that out in public. (not the way I look right now anyway. Imagine the most gruesome horror makeup job you can imagine and magnify it times 10.) Anyway, in the time it took to get from the hospital to the hotel room (10 minutes tops) my staples oozed entirely through the head wrap they had given me. By the time I went to bed, I had been through an entire box of gauze pads, all five of my head wraps I had with me (including one of the two they gave me), and was still having issues. I've got a call into the doctor this morning about it. I think the issue is in covering my head, the fact I'm still coughing a lot from the steroids, and the area it's coming from has a lot of scar tissue from my previous surgery and radiation. Therefore, it's taking longer to heal and every time it does get there I cough and bust it open again. It also doesn't help that I'm a bleeder and it takes me forever to clot anyway and usually takes four or five shots to get it good and solid. (I have actually ended up with scars from simple cuts that would just about heal, I'd hit, it'd open back up, just about heal, etc) I'm thinking this is what is happening but in the meantime I've got to try to keep the blood from ruining everything I have and getting all over the hotel room.

I'm hoping they will be able to see me when I go to the Neuro-Oncologist and either help me clean some of it up or see if I busted something in my coughing that needs a stitch or something. Speaking of which, I was supposed to see him at 12:30 and that appointment has been moved until 3. I knew there was a reason we would be better off just planning on being here tonight anyway. Then we'll make the run home Saturday. (Assuming everything really is alright with my incision and they still think I'm good to go.) At least at home, we can take better care of it and I don't have to worry so much about my blood getting all over the hotel room. No use infecting other people if I can help it.

While it sounds like I'm complaining about the oozing, I really do know that in the grand scheme of things it is a minor annoyance. I just hate not being able to do anything about it. At least if it was some sort of deficit or something I could be working towards improving it and I just feel helpless. I hate feeling helpless. However, I'm going to stay focused on the bright side now that I've got the venting out of my system and hopefully in a few hours I'll be able to look on to something different after speaking to the doctor on what I should do.

I can already see I'm going to be buying stock in white pillow cases, covers, and white towels and rags so they can be bleached. :)

Alright well, I'm going to put a compress over my eyes since they are starting to swell again and try to find a comfortable sitting position to rest.

Love ya all and many huggles

I'm Breaking Out of This Joint

Well, I've officially been discharged. I am going to get cleaned up and feel normal again and then I'm released to go. We will be staying in Rochester tonight and I have an appointment with my Neuro-Oncologist tomorrow afternoon so we will be staying a second night as well and coming home on Saturday. YIPPEE!!!

Can't wait to be in my own bed. Anyway, should be close to normal real soon and I'll be posting some Halloween pics as soon as I get cleaned up. :)

Love ya all and God is Good

Just Spoke With The Doctor

I still have at least one doctor I need to see today (the Neuro-Oncologist) but in all essence I have been released by the Neuro Surgeon. Everything looks great, they were very pleased with what they were able to remove, and they agree there is no reason to keep my on the steroids (the NO will make the taper decision though) since they removed an area the size of his fist from my head. Needless to say, swelling should not be an issue. :)

They are talking I will get out of here today but want us in the area at least until tomorrow. This is fine with me. Gives me an extra day to prepare for the trip home and to discuss options with my NO. However, I can't say I will be upset to leave. I much prefer managing my own medications to taking them whenever the nurse gets to them. It hasn't caused me any issues yet but my schedule just works so much more smoothly and I don't have to get up in the night to do it. They are going to come in and do some cleanup on my wound area sometime today so then I will actually attempt to post some pictures of this beautiful face. Right now the oozing from the staples (while they make a great Halloween costume) is probably a bit much for the average person to view without getting sick. Don't worry I do have the pics of it for anyone nuts like me that would want to see them but I'll reserve the Facebook pictures and the like until after it's been cleaned up and hopefully I can get a hairbrush through this mess I call hair. Rest assured my halloween costume will be amazing this year. :D

Anyway, I slept great last night and I find that to be a very good sign. I slept an entire 8 hours spread over two four hour sets. I was impressed. I even managed to sleep on my right side despite the staples. This is how I know the pain level there is very manageable now.

I hope to get John out of bed here shortly to go for a few laps before breakfast and then hopefully they'll get me cleaned up after breakfast and look at whatever comes next. With a little luck, I'll be seeing some of you next week and should be up for visitors.

Amy Checking In After Surgery

Well, if things keep going as they are, they are talking about the possibility of me being released tomorrow. This will be one day shorter than the last one.

This one has not been near the piece of cake the first one was. I was beginning to think yesterday that I was in way over my head (no pun intended) but today things are going great and other than still being on more of the steroids than I'd like, I'm feeling really good.

Surgery went well. He was able to remove everything visible on the MRI scan and it included scar tissue, necrosis (dead tumor from radiation), and some tumor itself (whether it's anything to be concerned with or not to be determined by pathology). This time the anesthesia made me very nauseous and I went through a heck of a day. The more I tried to not be sick the more sick I got and the more sick I got the more pain I was in. It was not a fun day yesterday and I was seriously regretting that I had to do this again. However, once we finally got some meds in me to control the nausea, I was able to drink water and then go back on my Tylenol which began controlling the pain. After I got out of pain, I was doing pretty good and got to take a look at my now gorgeous stapled head. Got staples this time. I think I prefer the stitches but these aren't too bad. I'm curious if they hurt more coming out though. They feel like they might. Ok, I'm rambling I can see so I better get back to other things.

I was up early this morning sitting in a chair and got to eat a soft breakfast. MMMM scrambled eggs, toast, and rice chex. Just got moved up to my room outside of ICU about an hour ago and not get to figure out what I want for lunch. Hmmmm... what sounds good? Anyway, word on the street is that if I keep doing as good as I am right now, I will get out of here tomorrow. We will still probably be here until he weekend because of pathology but we'll see how it goes.

Ok, the final summary... Although not near as smooth pain and speed wise as last one, it's been very smooth and there are no major issues that have arisen and no deficits (unless you count the fact my right eye is swollen shut again and I can't see out of it!!!!) I'm still certain the steroids are going to slow me down a bit yet and hope to get off of these really soon.

I guess that's it. Amy signing out about 24 hours after surgery. Thank you all for your thoughts and prayers. Love ya!!!

Amy's status

Amy is resting now. No problems, she can move all of her fingers and toes, she is in some pain but no more than what's to be expected. She is alert and doing well.

Amy's status

Just got the word she is coming out of surgery and being moved to ICU, we will get to see her in about an hour or so. They said everything went well.

Amy's status

They took her back to the OR at 7:40 and they started the procedure at 8:40. They will give us updates every 2 hours.

Surgery Less Than 24 Hours

Well, this will probably be the last major update for around 24 hours. There might be a few updates from John over the course of the day tomorrow but I want to put the message out now that there will not be any proper updates on status of how things are going and he will NOT know anything until around 7 PM CST tomorrow. They are saying it is an 8-10 hour procedure and he will probably not see me for 10-12 hours after I start pre-op at 5:30 AM. Therefore, it is likely to be a quiet day with the exception of maybe a couple of status messages late afternoon as I get moved from op to PACU.

The doctors seem very confident and so do I so we are ready to roll tomorrow. They are as anxious to get me off the steroids as I am to get off of them and it's quite interesting to say the least when they say that I have reactions to these things that they don't typically see in patients until they have been on them for months. YIKES!!! Anyway, I'll hopefully be posting to you all in 48 hours or so.

Love ya and huggles

On Our Way to Mayo

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

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

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

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

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

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

Love ya all and many huggles,

Steroids: Necessary but Evil Drugs

I am not typically a whiner but as I sit here at 3 AM this morning having been awaken after only 6 hours of good sleep with a sudden craving for food and to get out of bed, I figured what better quiet time then to discuss the biggest bane of my existence... steroids.

It is no secret that medical steroids cause a lot of problems with just about everyone that takes them. Therefore, I am really no exception to it I'm just tired of them already and need to vent about them a while. Might also give something for others that deal with these to relate to or warn those that may have them in the future.

A little background: I am NOT a medical doctor so anything I say here should be verified with you your own medical doctor. I am no expert on steroids just someone that has had the misfortune of being on two types during different periods of my life and is a little annoyed right now at the side effects caused from her latest 13 day and counting stint on them. (Don't get me wrong I'm happy to be on the 13 day stint of the particular one I'm on rather than one that I've been on in the past but Evil is Evil!!!)

Anyway, as this post moves along please forgive me if things don't seem in a logical way. It is a cross between the steroids, the issues I am having in my head anyway, and the fact roosters aren't even thinking of getting up yet.

So what do steroids do? They help/replace the bodies natural production of corti-steroid (typically produced by the adrenal glands) to help control swelling and inflammation. While there are several forms of medical steroids, I can on speak on my experience with two: Prednisone and Decadron.

My very first experience with Prednisone happened several years ago (6+) and for all intensive purposes was pretty good. After having fought a serious attack of bronchitis/reactive airways I was put on a 10 day dose. The only real side effects I noticed with this short of dose was general mind disorientation (I don't remember how I got to work that morning) and trouble falling asleep.

My second experience was with Decadron. Dec is a very strong steroid compared to Prednisone and uses a different formula. This is typically the first choice for those with brain swelling (such as what I get) and many forms of cancer. I went on Dec the first time following my first brain tumor resection in 2008. I was on it for a 6 week time with it gradually being tapered off. At the time, I wasn't 100% sure if all the side effects I was having were from the steroid, surgery, or the anesthesia but by the time it was over, I have no doubt that 95% of the things I discuss here were Decadron related.

I went through surgery with flying colors. I had very little if any pain, mentally I was sharp as a tack post op, and generally felt great. As the days post surgery went along, my mental sharpness fell drastically with each day to the point that some days I could barely put my words together (at the time I thought it was just my brain protesting its invasion). Then the joint weakness and pain started in. I would stand up and my knees would act like they were rubber. I couldn't get out of bed without assistance from my husband because of my rubbery joints. I was in horrible pain and had to take something than Tylenol for the first time since surgery. None of this was related to my head but to my body from something. By two or three weeks in, I could no longer climb stairs, my knees could just not lift me. I actually had one heck of a time getting in and out of most vehicles because I couldn't get up if it was a lower vehicle or climb up if it was higher. While this was a pain, it was only the tip of the iceberg and lasted for me for 2 months after I was finally off of the Dec for good.

Sleep was also an issue. Despite being exhausted from anything I did during the day, I would often spend hours laying in bed trying to sleep. I tried everything to get there. Most days I would just give up on a regular sleep routine and sleep when I could. This helped but at the same time I never got the sleep I probably needed. I guess one advantage of the steroid in relation to sleep was that when I did sleep it was a dead sleep. I don't think I remember having a dream again for at least 6 months after this. (Again something I thought was surgery related not steroid until I went on the Prednisone here again)

Moods were a killer on Decadron as well. I was very mild angered compared to some of my friends I've talked to and what they were like but I'm also a very mild angered person so I guess that's not so unusual. However, it was not unusual for me to be talking to you happy as can be, be totally sad 30 seconds later, and then unable to shut me up as I talked in circles. These were annoying... yes but concerning no. The one thing that happened to me on Dec that has made me vow to only go on it if it is the absolute last option is the manic moods I got into. I wasn't just moody but would daze and get (luckily only to myself) downright hostile. I remember more than once dropping to my knees (which is a bad thing to do when you can get off your knees) and begging God to just end it. I was doing very well physically and there really was no reason for me to feel this but I just wanted it over. This scared me a lot during this time and again I wondered if this was some horrible personality I was going to have to learn to live with since my surgery. However, after the steroids finally cleared my system, things improved until finally after six months or so, these episodes stopped.

I'm going to basically combine my current Prednisone experience with my prior Decadron experience as I talk about the other symptoms rather than repeat things. Weight gain is a huge issue for most people. It's typically not your "you eat to much now you are going to pay for it gain" it's the "gain 10 pounds for no reason and in places you wouldn't normally" gain. With Dec I gained 45 pounds before it was all said and done. This time I'm holding at 15 but it's still early.

My sense of touch and the tuning I have with my body is basically non-existent. My skin feels numb, I can't feel hot or cold, my taste buds are numb, and I can't feel how much pressure I put on anything so my poor hands take a beating when I don't realize I'm too close to something and I'm ripping skin off of my nail beds. My skin is also extremely dry on my hands, lips, and most of the rest of my body but my face is oily and getting an acne issue (which I only have problems with when on steroids). Even my muscles are always tense and I can't feel anything with them because of the desensitization of my body. My body pretty much takes over on its own when it comes to the most basic functions. Basically, if it's something it does naturally it has to try harder to alert me to it (I won't go into any more details than that).

One of the things that caught me off guard within just a few days was the change in my sense of taste. I could not touch anything that had tomato in it (stopped for a burger on the way home from the hospital and about gagged from the ketchup... Yuck), things like orange juice tasted like you had just brushed your teeth and then taken a drink of it (I love orange juice... still haven't figured out if it's a citrus thing of a tangy thing though because I can drink lemonade with no problems), soda tastes flat, and various other things that I normally don't like I can eat or vice versa. I also had a major craving for protein the entire time I was on them. Skip the potatoes give me the roast... no I didn't say a slice GIVE ME THE ROAST!!! LOL

Water retention is a big issue because the metabolism of sodium is slowed. Therefore, you try to stay on low salt but even then the water collects. It is not unusual for me to weigh myself in the morning and by early afternoon I've gained 10 pounds. I remember the first time this happened was on Dec and I was have a really cruddy feeling day. I had only been up a couple of hours (long enough to eat and do my dishes from breakfast) and went into the bathroom where I saw in the mirror that I suddenly looked 9 months pregnant from all the swelling in my stomach. This made my skin hurt bad (where's the desensitization when you need it?) and I kept thinking to myself that at least when this happens when you are pregnant you get something good out of it in the end. I later figured out that I gained 11 pounds in about 2 hours in fluid.

On the same or similar note be in weight gain or water that causes it, I often find it difficult to breathe when on the steroids. It makes my check feel like someone put a huge weight or heavy water filled sack on my chest. This is often very uncomfortable and it makes me labor to breathe especially with my history of reactive airways and bronchitis. I use a lot of my tricks from dealing with the other issues to get through this but as if everything else isn't enough? LOL

You also have moon face which is swelling in your face making it very round and moon like. I think it took well into 6 months for me finally to look normal again.

At around the time I was nearly done taking the Dec I started getting muscle cramps (charlie horses) in my calves. I had not had trouble with that since I was pregnant with my son. Steroids can mess with your electrolytes and was causing me a potassium deficiency. So, of course, out come the bananas and heat which would eventually help after you are put into tears a few times.

Energy is also an issue on steroids. They pump you up, make your heart race, make you raring to go even when your mind and body want to shut up and sleep. It's a strange feeling to be laying there without the energy to open your eyes but yet your body is running a marathon. Just another one of those joys of steroids.

I really want to believe that some of the issues I had with Decradon the first time could have been made more minimal if I had a doctor that could communicate or gave a darn. However, the NeuroSurgeon that did my first surgery was anything but that. I was never prepared for what the steroids would do at that point other than that they would probably make me moody (and this was thanks to being told by my tumor buddies not my doctor). I guess you chalk my first (and hopefully last) experience with Decradon up to learning. This time I have plenty of bananas in stock, am drinking juices to help keep my electrolytes up from the beginning instead of having to try to rebalance them, controlling my sodium and water intake, taking the proper medications to manage symptoms (gastro symptoms mostly) before they start, and maintaining just the right combination of moving and not to keep me limber and strong without overdoing it.

I do know that, while I feel like crud while on the Prednisone, my symptoms with both the more "tolerable to me" steroid and the lessons I've learned has at least made my current episode manageable. It always helps to have a good doctor that understands everyone reacts differently to medications and is able to help you get on what is comfortable and effective for you. I think there's a good chance that had he not agreed that if the Prednisone is taking enough of the pressure and swelling in my head down that I can function fairly normally and switched me to Decadron because that is the standard practice... I wouldn't be sitting here calmly typing or mentally preparing for this next surgery. I would be in a daze and technically unable to make my own medical decisions. (I still often wonder if I would have done radiation so readily after surgery if I had not been on the Decadron. I really don't think I was mentally competent enough at that stage to have been making that decision.)

Anyway, enough ranting and whining for now. I'm going to go grab another something to tie me over for a few hours then go back to bed.

Surgery Going Forward October 26th

I just wanted to send a quick update that we have finalized that I will be having surgery on Tuesday, October 26th. We will not know anything about times until after 8 PM on the night of the 25th. If you have me on Facebook http://www.facebook.com/dreamcatcher79 (please indicate you are from my blog in message when you request) we will post times on that as we know them. We will not know actual surgery time until Tuesday after we get through the pre-op stuff but my husband John will then post and entry update with details.

I am very positive about the direction we are heading and honestly, I'm ready to get this surgery done so I can finally start feeling better after 8 weeks of feeling like crud. We are hoping and praying for a smooth surgery and that the issue is scar tissue and not tumor regrowth.

I will be talking to you all again soon.

Tentative Timeline but Solid Plan

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

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

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

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

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

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

A Not So Typical Update

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

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

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

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

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

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

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

Huggles all

Amy

Vacation 2010: Animal Kingdom Lodge

We had carefully planned where we were going to stay while staying at Disney World. We all agreed we had saved long and hard for this trip so we were going to do it as all out as possible. Besides we had the equivalent of $2500 in Disney Reward Points to use so we could afford to go a little more all out. In the end, we felt that Disney's Animal Kingdom Lodge was the best choice for our family. We were right. :)

Animal Kingdom Lodge has it's own savannas with animals and the hotel is around these savannas. We were staying at the Sunset Savanna and it was just breathtaking. We were on the second floor so when the giraffe came around, we were almost eye to eye with them. They couldn't get to the actual balcony but I'd say they were 15 to 20 feet from us so you really couldn't get much closer. There were also Ankora cattle, cranes, various antelope, flamingos, storks, gazelle, okapi, Zebras, and various other birds and animals.

The first night we were there we walked out onto our balcony and were met with the following.



At one point in the evening we were met by five giraffes playing just 20 feet from our balcony and five Ankoras grazed right in front of us. Unfortunately, it was too dark to get decent pictures at this point.

I guess I got ahead of myself a bit here. The rooms at Animal Kingdom Lodge were just beautiful and totally amazing. The coloring of the room was gorgeous deep red (almost the color I would love to have in my great room) and the bath area was really neat with a vanity fit for a queen. The lodge itself was also beautiful with rich African decor throughout and it was a true lesson in African history. It was truly beautiful.

Vacation 2010; Driving, Family, SC

Truly the trip of a lifetime!!!
Sorry it has taken me so long to get an update out here on our trip. I really should have done it as soon as possible so that there wasn't any opportunity for anyone to put a negative spin on the great trip. However, I will do my best to give a great accounting of it, without letting certain people's view cloud the wonderful time we had.


Anyway, we left home on Friday, July 30 heading for Lexington, South Carolina. We had a nice, fairly uneventful drive with beautiful scenery as we drove through the mountains. The fact it rained most of the way didn't bother us a bit other than the pictures we attempted to take didn't always turn out.


We stopped Friday night in Kentucky then continued to SC. We arrived in Lexington and were greeted my my husband's Aunts, Uncles, Grandma, and cousins. All of whom I have never met and he hasn't seen for a very long time. They had a glorious feast for us that night and we really enjoyed the bonding and conversation.


It was great to meet most of my husband's family for the first time. They were all very great and I loved talking with them. His Uncle Tim and Aunt Becky were so nice to let us stay there for a couple of days so that we could bond. I really wish we could have spent more time together for we all got along amazingly. It was like we had known each other and saw each other frequently our entire lives. We will definitely all have to get together again sometime soon. Maybe next time up in our area.

The beautiful, young lady on the right is my husband's cousin and was in diapers the last time my husband saw this part of his family... Now she's a Southern beauty Queen. ------------->



We left South Carolina on Monday, September 2 around midday and drove to Florida arriving at Animal Kingdom Lodge; Jambo House early afternoon.
The entire crew. Left to Right, top, middle, bottom: Amy (me), Jazer (my son), Aunt Becky, Tyler (cousin), Aunt Becky, Grandma Ester, Ellen (cousin), Uncle Tim, John (my hubby), and Travis (cousin), Not pictured David (cousin)

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.

Seizures Appeared One Year Ago

It was one year ago today that I had my first seizure. I remember things like it was yesterday. I didn't sleep well at all that night but rather I tossed and turned most of the night. My mind kept racing but nothing that I felt was all that abnormal. I got up as I normally did and got ready for work and hurried my son along since he was going to his great grandma's that day. I felt a little sick to my stomach and unexpectedly tired that morning but didn't think anything of it.

I noticed shortly after I reached my exit to the Interstate that I really did not feel right. I remember one instance where I felt like I blanked out for a second and I found myself in the third lane without remembering how I got there. No one was around and I assumed I was just tired and trailed off so I continued on, a bit more cautious.

It was several miles down the road, closer to Springfield than to home when I remember looking ahead and seeing a semi in front of me and making the conscious decision to get into the left lane to pass him. For some reason this was funny to me and I felt my mouth twitch into a smile. A second later I was staring at the roof of my car and I had no idea why. I could hear my son tapping me on the shoulder and calling "mom, mom" but I couldn't respond to him. I felt myself mentally fighting to get my head back facing the front when I heard the wheel hit something briefly. By the time I finally had both hand back on the wheel and my eyes looking ahead again, my son had us back on the road. I could tell he was scared and while I still wasn't 100% sure what had happened, I was pretty sure it was a seizure based on what I had heard about them.

Not daring to pull over on the interstate, I told my son to call his dad but to keep a close eye on me and grab the wheel if I started acting funny. He handed me the cell phone and I told John I was going to take the next exit but he better come get me. I actually missed that exit because it was one I was not familiar with and by the time I got close to it, it was by me. I was able to get us safely to the parking lot of a car dealer and parked. John was on his way and my son was with me.

I called grandma to tell her that he wouldn't be there and then called my mom because I knew she would probably call her to ask what was wrong with me. I remember telling her I think I had a seizure and I think I managed to tell her where I was before I again had the feeling something was funny and the smile came across me. I was standing outside the car and while I could feel my leg a bit unsteady and could hear her on the phone, I was unable to respond. Eventually my son got the phone and my seizure ended.

My mom and dad arrived and my mom called my doctor. While she was on the phone with the nurse, I had another seizure. I remember her making the comment to find something for me to bite on and I kept trying to shake my head no but couldn't. The nurse told her not to do that and to get me to the ER.

Shortly after this, John made it from work to me and he drove me to the hospital. I had another seizure in the car with him. I remember him gripping my hand when I had it. I was quickly admitted at the ER and they put an IV into me. John and I told what happened several times. While the doctor was in to check on me, I had what would be my last complex partial seizure. He had asked me a question and I went to answer him. I again got the feeling something was funny and the seizure began. I think this was one of the longest I had. He held my left hand and called my name several times. John held my right hand and talked to me. When it ended, they gave me a shot of Attivan, a fast acting medicine that will halt seizures.

I was extremely tired after getting this and curled up dozing while John sorted things out to get me dismissed. I would be starting on Keppra and the neurologist wanted me to have an EEG. John drove me to the office to get my EEG. Unlike the first EEG I had, I found it hard to stay awake for the test rather than finding it hard to sleep. After it was finished, we headed home.

Over the next two days, I would have several simple partial seizures that were simply a feeling of euphoria and twitching of my mouth. During these, I could communicate although not talk and could hear everything that went on. I never lost consciousness, my balance, or even my place in the conversation when it was over. Luckily, as quickly as they began they ended and I started my six months of not being allowed to drive.

I'm sure there are things that I have missed in my recount of what happened but I do know this... it is an experience I hope I never have to experience again. Seeing the one year mark come with no further seizures makes me very happy. :)