The Progress of My Hair

One year ago, this is what I was left with after completing radiation (ignore the markings on my head, this is from Halloween last year. I realized that these are really the only good pictures of my bald head that I have...):






















This is the proof that I have a huge bald spot still... even if I'm much better at hiding it now:
















When I have a good hair day I can hide it quite well, although the 30 minutes it takes to get this really sucks when you are used to it taking about 5 minutes:

















And the answer to the question I am asked the most... Did you perm your hair or is that what treatment did?

Nope, it has always been naturally curly thus why I always had long hair to pull out all of the curl!!! :D

I think it's made some pretty good progress overall. Now to just get that large bald area to get some hair that isn't as light and hopefully encourage it to thicken some. (Or the other side to hurry up and start to straighten so I can do a comb-over!!!)

The Long Awaited Picture of...

FRANKEN-AMY!!!!

I said right from the beginning I had one picture that I had to take. It was doomed for failure when I realized I never took out my green face paint from my halloween stuff. (Truth is, it's probably a good thing I did forget since it would have probably been impossible to remove without causing me pain at this stage.) However, a luxurious face mask peel was found to take its place. Also, I had planned the picture when I assumed I would be getting staples instead of stitches so it doesn't look as much like frankenstein as I was hoping but this isn't him... it's better it's Franken-Amy!!! So maybe the picture isn't as good as it might have been but...

Here she is, complete with neck bolts... (Do not read further if squeamish)

Steroids - The Necessary Evil Drug

Well, I have now been off of my Decadron Steroid for one week. I had been on it for a month total including the "taper down". I've decided that steroids suck. No other way of putting it. However, I know they are the necessary evil. Without them things could have been much worse. For those that don't have any clue what I am talking about... I will explain.

Following surgery in the brain, one of the problems that can arise is swelling of the brain. This is a very bad thing in the brain. The brain is in the cranium which is an enclosed hard protective area that does not expand. When you have surgery in other areas of your body, the area can swell and expand as needed. In the head, that can't happen without causing a lot of pressure. In order to make sure this swelling doesn't occur, patients are given a steroid following surgery.

Steroids are notorious for causing lots of various side effects. Some of the effects I was warned about by other brain tumor surgery patients were severe mood swings, 'roid rage (where you would just get into a rage of anger for no apparent reason), weight gain, the need to constantly eat, among other things. I was pretty lucky and didn't experience most of these symptoms while on the steroid. I did experience others, however, including joint weakness, insomnia, major acne, and total loss of taste. Reading and researching on the internet now, I see there is a huge list of other side effects that are pretty nasty that can be experienced while on the steroids.

I was prepared for the steroids to really suck but what I was not prepared for was how lousy I would feel when coming off of them. Apparently it is not uncommon for some to have symptoms caused from being off of them. Withdrawal if you will. Anyway, this week I have had major problems with swelling and potassium deficiency. As for the swelling, I have what they call moon face at the moment. My cheeks are puffed out and you can't make out any of my features or feel my bones. I also have a "hump" in the back of my neck from fluid build-up. Furthermore, I am getting intermittent swelling in my feet and hands. However, the most bothersome is that I am getting swelling in my stomach. Yesterday, I literally looked like I was 9 months pregnant. My stomach had swollen to the point that you couldn't even see my stretch marks from my previous pregnancy because the skin was stretched so tight. I put on 8 pounds in 6 hours from the fluid gain. Basically because it is from the steroids, it just has to run its course. No one seems worried about it but it is soooooo uncomfortable.

The other issue that has arisen from the combination of fluid retention, various drugs that were in my body, and who knows what is a potassium deficiency that was causing really painful cramps and pains in my legs. Luckily, increasing the potassium rich foods I eat has helped that so far. We are waiting on my bloodwork to see if there is anything else that is out of whack but so far that is the plan.

So I guess the purpose of this post is that I realize steroids are necessary in certain situations but dang they suck. Oh and worst of all, I've actually found places where people stated they had the swelling like I have for 3-6 months after coming off of them. Luckily, they were on the steroids much longer than I was so hopefully that won't happen with me. I know it sucks when you feel worse at the five week mark than you did in the first week after brain surgery. With any luck, I'll be able to go a very long time without having to deal with steroids again. Also, now that I know, maybe we can try some other methods of tapering to try to minimize the "withdrawal" symptoms. Not sure if it will happen or not but it's worth a shot.

We Should Have Results Tomorrow

Hey all, just wanted to post a quick update as promised. (Yikes twice in one day)

I went in to the doctor today to have the swelling and leg pain issue I've been having checked out. We don't have anything official yet but they did do some bloodwork and we should have the results tomorrow. The good news is that they are pretty certain there isn't any clots and they are pretty sure I just have some electrolytes or something still off. They are guessing all the fluids they pumped into me in combination with the meds just have something out of whack. We'll know for certain tomorrow.

In the meantime, they have me trying a few things to help increase the likely culprits. As for the swelling, they gave me some suggestions to help reduce it but it will just have to run its course. Apparently there really is two types of people when dealing with steroids... those that have the problems while on them and those that have problems getting rid of them. It appears I fall in the latter category. Depending on what they find with my numbers they may prescribe me something to help the process along but they need to find out what is off first.

Ok, I think that's all I have to report for now. *Huggles*

We're Five Weeks Out Now

Five weeks ago today I was in surgery to have my brain tumor removed. Part of me feels like there is no way it's been five weeks and another part of me can't believe that it's only been five weeks. I guess it's just one of those things.

In technicality, I am scheduled to return to work next week but since I haven't seen my doctor yet, that will have to be pushed out another week. (Note to self, if you haven't heard from your short term disability you need to find out what is going on.) I'm not sure I could return to work yet at this point anyway. I'm building my stamina at this point but I'm still pretty weak and I'm at about 5 hours of activity before I have to lay down. Anything over that and I start getting a little... weak and uneasy and I definitely can not afford to fall at this point in time. (Which brings me to the other thing of I am unable to get up off the floor if I did fall. Don't ask me how I know but it wasn't a fall just a weak thinking moment.) Don't get me wrong, I'm actually looking forward to going back to work but right now I'm still enough in recovery mode that I'm just not sure what I'd be able to handle. We'll have to see what happens.

Let's see. At some point today we are going to go have a venous doppler done on my legs. I woke up yesterday morning with an awful pain in my legs. We are hoping that I'm just having some muscle spasms from officially being off the steroids but they want to rule out a late breaking clot. It's better to be on the cautious side. I am also hoping to get into my GP and if everything is good on the doppler, get a dieretic or something for this darn swelling. It is really starting to get on my nerves and when there is something that can be done to combat it, what's the use in dealing with it?

I will say I am happy to be mostly back to normal as far as mental capabilities go. Believe it or not the thought of being on the computer turns my stomach right now (not a good thing when you work on them for a living) but other than that I'm just as sharp as I have always been. About the only major thing I've noticed is concentration and motivation. It really takes a lot of my concentration to do most tasks. I have to really set my mind to things and give it my complete focus. Multi-tasking is not one of my strong suits at the present but I'm sure that will come back with time. I am only five weeks out after all.

Ok, this ended up having no real rhyme or reason so I guess I'll wrap it up. I have my first follow-up with my NeuroSurgeon next Monday and I'm sure I'll have tons to report after that. I am also determined this week to finish writing out my "surgery experience" and I have some very special pictures to post soon. FrankenAmy anyone? Anyway, talk to you all soon. *HUGGLES*

It's Been a Good Weekend

For the most part, I would say that my family has had a very enjoyable weekend despite me having what I would call the worst day I've had post-0p. I'll just give a brief summary then I'm going back to bed. I'm just up with my morning meds and thought I'd go ahead and do some musing while I'm sitting here waiting for my morning snack to settle with my meds. (I have to eat with my meds or the steroid and the horse pill I take for my joints make me miserable all day. And, of course, after eating something I usually am awake for a bit and unable to go back to sleep. Soon enough I'll be off of a "strict" schedule and can be a bit more flexible as I was before.)

Anyway, that ended up being a long and confusing introduction. With the holiday, John is enjoying a three day weekend home with us. (Not like he's been working much of late so I'm sure it isn't quite the jolt he was looking for.) I guess best is to just start with the 4th. We really didn't do anything spectacular. We did go to dinner at my Grandma's house for a short time and that was a nice break in the day. She cooked a very nice meal and we had an enjoyable time. We came home and watched a movie (Finding NeverLand) that had been sitting here on our NetFlix for WAY too long. Then, around dusk, we loaded into the car to see if we could find any good firework displays... we didn't. I think the changes in the laws over the past few years have pretty much put most of the really good local shows out. It's sad too because our town had one of the best shows I had ever seen and that included the multi-million dollar ones put on in the "Big Cities". We did see a few stray type shows so the drive wasn't a complete waste of time. Besides the night air, with the windows down, cruising the country wasn't all that bad anyway. We got home and did some "finger foods" and the boys enjoyed some watermelon on the porch with the cats. I think I finally passed out around 11 and I slept great so I'd call it a success.

Saturday we spent most of the day home. I have been working on organizing some paperwork and the like and I recruited the boys to do some cleaning. I also tried a recipe for some Italian Beef Sandwiches on some leftover roast we had earlier in the week. It turned out great and was a big hit. I will say yesterday was the roughest day I've had since surgery. We had another reduction in my steroid and I think my body was protesting it just a little. I woke up with some swelling in my face but it wasn't anything I was to overly worried about. By the end of the day, I was pretty miserable and my hands and feet were retaining a bit of water too. It wasn't causing me any serious problems, just very uncomfortable. We're watching it closely and the swelling has more than halved today so I think I'm out of the woods and my body was just reacting to the reduction in steroids.

Outside of medical yesterday, we had a visit from my Mother-n-law and that was a nice little chat. We also made our visit to Square Dancing. I don't think I was the company that I normally am and I apologize to all my friends there but I really was a bit uncomfortable last night. :( However, it was good to see everyone and I've got some "projects" to work on now for a big Square Dance convention so it was all good. Now I just need to see what all I have to do since I still haven't seen them. LOL

Well, I can't really think of much more to say. As I said earlier, I woke up this morning and the swelling is down significantly so I think I'm out of the woods. We don't really have any plans today. I will probably recruit the boys to finish the "cleaning" and we have to go to town to get one of my prescriptions refilled and groceries bought but otherwise it will probably be a quiet day at home just relaxing. Which is ok with me surprisingly.

We do have a 4H show later this week we'll have to attend but I don't believe there is anything else pressing at all so we will probably do things around the house this week as I feel up to it. I've got some weeds with my son's name on them!!!

Hope everyone in the States has had an enjoyable holiday weekend!!!

I Finally Wore Myself Out

... and it was just what I needed!!!

I had a fabulous day yesterday. I got a fair amount of stuff accomplished including making a nice meal for my family. It felt really good. I also accomplished several meaningless... errr productive tasks that made me feel like I'm actually living again instead of just existing. That means a lot to me and I'm really looking forward to seeing things start fitting back into place.

I will admit that I think I both mentally and physically exhausted myself yesterday but I knew when 8:30 rolled around and I was tired, that it was just what my body had ordered. (For those that maybe don't know... pre-surgery I usually went to bed between 8 and 9 PM every night. I'm just one of those people that need that 8-10 hours of good quality sleep to be in prime working order and I've done it my entire life.) Anyway, I slept about 9 hours solid and it really was the best sleep I've had since surgery. I was just out and I've awaken this morning feeling truly rejuvenated.

It's still very early in the day but my mind in clearer this morning than it has been in weeks. I like being able to sit here at my laptop and words just flow to my fingers. I have struggled with this fog enough the past few that it just feels good to be feeling normal.

I think I will have to take it relatively easy today because I don't want to go reverse by overdoing it too often in a row but if this is any indication, I have a feeling things are starting to look even more up in the days to come.

Well, just a short and sweet blog post. Who knows, maybe today will be another good day and I'll get some more of my surgery blogs written.

*huggles and God bless*

The Week In Review 6-28-2008...

I really am here and everything has been going well but I have to apologize profusely for the lack of updates. Truth is, I've been working on this very entry since Friday and my muse just keeps taking a hike on me. It's really no wonder I guess since I am in one heck of a drug-induced fog. (Bet most of you never thought you'd see me type those words.) Anyway, I have vowed that I will write this entry today if it's the last thing I do. Again, I apologize for lack of updates and one of my goals in getting back to normal is to start updating again regularly and see if I can get my mind on the other side of this foggy window. LOL

Medically - Well, really there hasn't been any news on the medical front and that's probably mostly my own fault because I've fallen behind a little on my "pushing" to get answers. (I'm blaming it on the fog.) There have been some minor changes in appointments and the like but I may decide to save that for another entry. Basically the next "official" step will be another trip to Chicago on July 28th (this date has changed I will update it when I get focused). On this appointment I will have my first post surgery MRI and I expect to get a bunch of questions answered that have been building up. Among these questions will be details on what was found, what was left, why things were left, what to expect now, what's our next steps, I want to see this thing, let's seek second opinions, I want my records, etc. Believe me, I plan on being out of the fog enough by then to be my typical "won't this girl just shut up now" self. :) You can bet that when I have answers, so will you.

Beyond that appointment, there are no other "official" appointments made yet although I know there will be other follow-up MRIs, etc. Only other doctors I'm seeing routinely is my therapist and my chiropractor. We're not doing treatments with my chiro while I'm on the meds and healing but he is always full of good advice and has given me a few pushes in the right direction already about listening to my body. My therapist and I are talking weekly and it's to make sure that I don't slip without anyone else noticing. He knows me very well and pick up on things that John and I may not. So far he is quite pleased and thinks I am doing just as he expected me to. It's a mental game you know and you all know I love mental games... even if I have to play them in the fog of drugs.

Emotionally - Although my world has been rocked in a big way, I am holding up very well emotionally. I have my "out of character" moments where both of the boys look at me like I've grown a second head but really they haven't been anything to unexpected. It's an adjustment going from someone who is mostly strong to someone pretty dependent but I'm not letting that get to me too much. There's been changes physically and even a little psychologically but they haven't had the toll that I expected them to have. They've been more of a nuisance than anything. Truth is, we've been very good about trying to spread some activities out and my son and I are trying to establish a routine and all of that is helping keep this girl in the right path.

Mentally - As I've said a few times already... mentally I am in a fog right now. It's not a bad fog and the truth is I expected this. I have still got very high doses of medication running through me so it's really not unexpected. I am struggling now and then to get motivated to do things that are even simple like get out of the car in less than 10 minutes. I just get my mind set to do it and decide I'm enjoying the car too much. LOL If it keeps up after the drugs are gone, then I'll worry but for now I'm learning what it is like to be my boys dealing with their ADD. It's not all that bad but I do have a new understanding for the way they think... errr don't think. Simple tasks take a bit more concentration but so be it. It's temporary.

Physically - Wow, this one is a can of worms. I feel great considering what I've been through. I have very little to no head pain still unless I do something stupid. (Don't ask it's a long story caused by my own stupidity because I knew it would cause me a problem.) Really, if I am having any pain at all from the surgery itself I think it's from the anesthesia and the like more than the type of surgery. Imagine that.

The surface swelling in my head went away almost entirely yesterday. I no longer have this nice little Klingon head developing. Other than the short hair on my right side and a nice little scab on my forehead, you'd never know I just had brain surgery. About 90% of the scabs where the incision is has healed completely and fallen off at this point. As I said, it's where they tied it all off at my forehead that is the only "vivid" scabbing right now and it looks like I did a nice little head bang on my car door or something.

The bruising on my face is almost gone as well and the bloodshot in the eye is almost invisible now. I'm guessing a few more days and John will no longer be able to take credit for beating the tar out of me. :)

Ok, that covers my head, my bruising... what else... oh, I am still pretty week but have set out this week to gain that back. I am working on my stamina a bit and trying to start rebuilding the muscle tone I've lost. When I had to stop in the middle of the steps at my therapist's office yesterday I knew it was time to start working that way again. My greatest physical pain is the toll the steroids are taking on my cartridge. I am combatting that as much as possible with Glucosomine and just working them but that will be a work in progress as long as I am on them and I know that. We still have a few more weeks... well less than two but still.

I guess still on the physical meter, as long as I'm not doing too much bending and the like I've starting taking care of the house again. It makes me have a sense of normal back so I'm not minding too much. I am pushing myself to do things for myself when I can. There are things I've found I can't do (nor do I try) and I am still not lifting anything near five pounds although I have picked up the milk jug a few times as long as it's not full. I hate feeling helpless so every little bit helps. I've found I sleep less but I rest a lot still. There really is a big difference in sleeping and just staring at a ceiling fan for an hour... believe it or not the fan is more restful.

Family - John has returned to work and has been doing ok with. I think he is happy to be back to at least semi-normal even if he does have to work a bit harder at home right now because of what I am unable to do. He has been away for quite some time since we were on vacation before surgery and then he had "vacation" when he returned. Things are slowly getting back to a routine.

I can't really speak for him but he is doing his best with what he has. John and I work in such a way that we both cater to our strengths for the most part and don't have to "deal" with our major weaknesses on a normal basis. This works for us and it's seamless so we've never had a reason to venture outside of our comfort zone with certain things. He's had to do that a lot recently and I think he's done a pretty good job even if I have had to slap him around a few times to make him think outside the box a bit. It's good for him.

Our son is doing well too. He's had a few spells of "summer crazy" already but he's had some major changes this summer so it's not too surprising. I'll also admit that the summer has been a bit boring so far but as things start getting into routine a bit I think he will start enjoying it a bit more. He has made a lot of sacrifices this summer and had to miss out on some things he probably would have enjoyed but we plan on making up for that as I get a bit stronger. I think I finally got it through to him that there is more to do in the house than play random games and watch cartoons all day. We'll see how long this revelation lasts. LOL

Play - I'm not sure how much play we've actually done but have have enjoyed a few nights out doing "unusual" things for us including visiting a small restaurant we'd never visited before. You all know I hate to spend money but we've allowed ourselves a few splurges recently. Hey you only live once and since we can't dance right now, we can use a bit of that for other stuff.

For those that are interested, we will be dropping by dance again Saturday night for a short time. A good friend has recruited me for a little project and it is just the excuse I need to get John to take me and lift my spirits again with all my lovely friends. I hope to see a bunch of you there!!!

Other plans - We do have a 4H show this week so we'll see how things go with that. I really need to get him motivated to play with his project a bit this week instead of just talking about it. Unfortunately, with ADD you have to push them a lot more and my own push isn't there right now so we are struggling!!!!

Ok, I think that sums it up. I do plan on trying to work on my surgery series of back posts but I'm not making any promises at this point. I figure as long as I get it all finished before I have to return to work... well, I'll be pleased.

Love ya all. Huggles

Still More Questions than Answers

I realize I have been really bad about posting out here with updates and the like and I apologize for that. I guess the continue lack of routine as I recover hasn't helped me much in the motivational area of trying to keep things running smoothly, although they really are. Today, will just be a nice little update, nothing fancy since I really don't have much to report other than I am continuing to recover well. With any luck, I'll post along the lines of my typical weekly update on schedule tomorrow so that it is lined out a bit cleaner and you can really see how things are progressing.

Monday was a rather quiet day as we prepared for the trip to Chicago for the two-week follow-up. Apparently, either I had some misunderstanding on what would occur or I read too much into it, but it ended up being a... well, it wasn't as productive as I would have liked Tuesday. It was a long trip, although I didn't mind it, and really the biggest accomplishment was I no longer have stitches in my head. It could have probably been done down here but since there is some "surface swelling" it was probably best that they could see that things were healing ok. They were a bit concerned with the swelling at first but the incision has healed very nicely and it all appears superficial and no infection or anything. I think they were pleased and the evident hair growth helped to assure that there's nothing serious going on in there or I'd probably still be bald as a baby's backside up there.

There continues to be a bit of this surface swelling but it does appear to go down daily and as long as it doesn't try to reverse, we are in good shape for now. I will finally be able to take my long awaited shower tonight and for some reason I think that total stress pull will probably do wonders for that fluid retention. I'll have to let you know. :)

Beyond that, we never even spoke with the actual doctor so we have no real answers as far as on the tumor, pathology, next steps, etc. I am led to believe that we will probably be considering my ace in the whole with Gamma Knife to try to combat that which they decided to leave but that will have to be left to some detailed facts and won't be decided for possibly months unless this thing decides to grow all of a sudden.

Otherwise, and I'm sure I'll get into this more in a "serious" post later, but I do think we made the right choice in the end. The swelling that has been indicated to us tells me that even if this thing was laying very quiet for now I was a ticking time bomb. I was at a high risk for stroke, hemmorage, and who knows what else at any point in time. This was a good move... especially since it went so well. Had things not gone as smoothly, I might feel differently but as I said, this is another post for another time.

Well, that's a quick review. John returned to work today so it is just my son and I today. We have a small to-do list of things we'd like to do today just to try to feel a bit normal again. Normal... what's that eh?

*Huggles*

The Twelve Day Blog Update

Some of you that receive my email updates will already have this but I'm posting it here too. :)

Hey Everyone.

Sorry I've been so bad about sending out updates since I've been back home. I guess the lack of any "formal routine" has made the days go quicker than I realize and by the time I think about things like updates... well, I'm no longer set to send them. Things will probably still be pretty lack of routine until after I have my two week follow-up on Tuesday. I have been really careful about the things I do so as not to aggravate stitches or anything so I've been doing what I'm supposed to I guess. You know, just taking it easy. :)

Anyway, I still can't complain much at all as far as how smoothly everything has gone so far. I can pretty much do what I want just with much more caution. I can't do any lifting, have to avoid bending and stuff, and my stamina is less than 5% but I'm listening to my body and resting when I need to and when I hit the right combination I can get myself feeling really good rested. My biggest complaints at the moment are that my joints are hurting me from the steroids but I've been told to go back on my Glucosomine and I've been doing some light isometrics so I'm hoping that will start alleviating that problem as we move along. Again, after I see the doctor on Tuesday, I'll be able to move into a bit more without freaking out about stressing something. I just don't want aggravating stitches or anything at this point. I can see the light at the end of the tunnel... No going back now.

I will say to those I saw last night at dance... It was great seeing you all and you will never believe that the few hours I spent with all of you meant!!! It was truly a lift for my spirits, it felt good to get out, and seeing all of you really warmed my heart and set me up for the days to continue. I miss all of you already and can't wait to be back there on the dance floor with all of you... even if I know that will be quite a ways off yet. For those that don't know, I was able to spend a few very quality hours at a square dance last night with all of my wonderful friends there. Everyone has been so wonderful to me and being able to cut loose for a few hours was just what the doctor ordered. I won't deny that I was exhausted when I got home last night but I slept for 8 very deep hours and that was just as needed. I had gotten into way to many catnaps so the total deep sleep just hit the spot last night.

Well, I'm going to wrap this up now. It's about time for my noon nap. I will continue to post updates to the blog about the "history" and past pictures and I have a very special picture I need to break down and take today or else. I promise they will be coming soon. I'm just listening to my body right now.

I love ya all and Big Huggles,

Finally, A One Week Update

Well, I'm not sure if I've actually been listening to my body of if I've just been putting off some serious blog entries because I'm too annoyed to figure out how to post some pics, but I apologize for not sending some better updates prior to now. Honestly, I think a majority of it is that I've got some really important things to post and I'm trying to figure out how best to do it without running a vast majority of you off. You see, I guess it's a bit unusual to actually take pictures in the early days post surgery and I have a ton of them. I really want to post them, because I think they are beneficial but at the same time, I don't want to expose anything to something they are not prepared to see. Get my dilemma? I'm not an HTML expert by any stretch of the word. What would be ideal is to be able to have "hidden" pictures but I don't even know how to begin to do that so I need a work-a-round. If anyone has any ideas to give me the push in the right direction, I'm all ears. :)

I guess I should make an actual update. We have been home since Friday night and it has been great being in my own bed. I think we have all been resting a bit easier and honestly, it hasn't been as bad as I thought it would be. I have had a few spots of stir crazy but I think that's to be expected. I am slowly increasing my activity by taking a small walk outside each day. My goal is to be able to at least make the one-way trip to my neighbors house by the end of the week. We'll see if I succeed or not. For now I'm just happy to walk to the mailbox and up around the house to watch the kittens play. It brightens my day.

Surprisingly, I haven't spend near the time attached to this thing or my reading as I thought I would. I figured I'd be so bored by now that I'd be just grasping for things to do. I guess I just didn't replace the fluid IV with a laptop cord quite like I thought I would. Honestly, it doesn't bother me because I know I still have a long way of recovery left and I will be needing the "activity" later more than I do now. I do know it's bothered John a little though because he's worried about my mental state. Don't worry, I think that considering what has happened over the past week, I am doing just as everyone would expect. Optimistic, determined, fighting to slow down, and just happy to be here and functioning.

I just want to send a quick shoutout to everyone who has sent me emails, cards, and flowers. I apologize for not getting back to you all individually but I'm sure I will as the days start to tick on. I really appreciate them and they really do know how to lift my spirits. I couldn't have asked for a better group of people to become friends with and I know that for one I am extremely happy to have you all on my side. *Huggles*

Well, the week is set to be pretty much of the same. Tomorrow I have a doctor's appointment in Springfield and I plan on stopping by to visit my co-workers at work for a little bit just to get out a bit. We will probably hang out less than an hour but if you are a co-worker, feel free to drop by Jim's office or I may be out in the cafeteria for awhile during break time. I will be up to visitors just be prepared for me to not be moving around a whole lot. In other words, you have to come see me.

I promise I will keep my head covered unless someone wants to see it and then we'll go someplace a little less, obvious. Just be prepared because I do still have pretty prominent discoloration in my eye and face. It looks like I was in one heck of a battle but the good news is... I won. Last I knew the other guy was in a test tube somewhere being dissected. :)

Oh, one more thing for this upcoming week... I am hoping to talk John into dropping me over to square dancing for a little while on Saturday night. I imagine we will be there early while the rounds are going on since the square dance might be a bit too much for me. (Don't worry, I have NO intention on dancing!!!) It just might be a little harder to sit on the sidelines for squares so I might come at the 7 and may be gone by 8 so if you want to visit... I'd love to see you!!!

Huggles to everyone. We did it!!! The power of God came through yet again!!! (And as my Father-n-law says "The doctor's get the fees!!!")

We Are Really Home Now!!!

We arrived home around 8 PM last night. It was a long drive and we had some problems getting my steroids at the local drug store so it took a bit longer than we expected. However, we made it and it was wonderful to sleep in our own bed last night. I slept very well, despite having to wake up at 3 AM to take my steroid. Luckily, when you plan things right, it only takes a minute and then you can slip back to sleep. :)

We know that the journey is still a long ways from over but I don't think we could have asked for a better outcome to this first stage of the journey. I could not have written the surgery and recovery to go any smoother than it did. I was positive that it would all turn out great, but even I did not think it would go as smoothly as it did. I feel fabulous today despite probably not getting the amount of rest I probably should have yesterday. My biggest issue today is that my head is itching like mad. There's a bunch of "gunk" in my hair from surgery and several days of not washing it and it itches like crazy. I have a week or better to go before I can do anything about that. I really can't wait though.

The incision looks fabulous and other than a bit of minor tightness as it heals, it feels pretty good. I've found that the trend continues and the majority of the "pain relief" I am taking is more to ease the itching than any actual pain. Luckily a single tylenol dulls the nerves just enough the itching becomes manageable.

For those interested, I have lost a total of 6 pounds since the day I went into surgery. I guess that liquid diet can do more for you than you realize. :) It's not an easy way to lose it and I know the steroids will likely reverse the trend yet but at least I know of something sorta positive coming out of it.

John has agreed to help me shower here in a little while. I can't get my head wet but I can at least work on a bit more of the tape that is covering most of my body. I will probably try to sleep a lot today to finish catching up on my sleep and I'd like to spend some time on the porch today but otherwise, I'm just taking it easy.

We will be home most of the weekend and every day next week but Wednesday. I have a doctor's appointment on Wednesday and I plan on stopping by work to prove that I really am feeling as good as I look from my posts. Seriously, this ended up being a piece of cake compared to what I expected. I am also hoping to "visit" dance next Saturday. I won't be able to dance and my visit may be for only a few minutes but again, I think it will be great for the spirit to see my friends. Otherwise, for the most part I am up to visitors. I do recommend giving us a shout before you come over though in case I'm taking a nap. I wouldn't want anyone wasting a trip to see me. Also, if you are squeamish, be sure to call before you come over. I have taken to not covering my head already and it is a bit much for those with a squeamish tendency. I have no problems covering it, you just have to let me know ahead of time. :)

I know a lot of people has asked what they can do to help us out. Right now, I really can't think of anything major. We picked up a few things last night while we waited for my meds so we have fresh fruit and veggies in the house and bread. The only thing we forgot is milk but John plans on "getting out of the house" to get that a bit later. Otherwise, we really are pretty caught up still for now. Your words of encouragement, you notes of get well, and your emails of strength have done more for us than any of you will ever realize and I will never be able to repay you all for it. I have thousands of angels looking over me and I can hear their wings beating quietly.

I love you all and I thank you for everything.

Huggles

READ WITH CAUTION IF SQUEAMISH

Ok I have given up on trying to figure out how to hide images so that I don't turn off the squeamish. Instead I am going to post a bunch of pictures here with fair warning before getting to the pictures that are a big much for the squeamish. The pictures at the top are safe and most should be able to look at them without much problem. I will do my best to post them and put decent descriptions.

A few tame ones first:


This one is taken the day after surgery. As you can see my head is wrapped for protection and the like. They had just come to change this wrap. Also note the black eye.






Ok, do not read further if you can't handle seeing medical stuff...



This is what it looked like underneath those bandages above. You can see the stitches really nicely in this picture.









This was taken the day after I came home and after I gave up on the braids.












I didn't take as many pics as I wanted to but I think you get a good idea of everything. As you can see in the last one, you can still see some of the benedine or whatever they call it on my head since I wasn't allowed to take a full shower and wash my hair yet.

Good Thursday Morning to Everyone

Hi everyone,

Thank you all for all of your words of support. It really means a lot and helps me keep things in perspective. I look like I was in one heck of a fight and if I didn't know better, I'd swear it was a fight I lost... but I know better. The other guy is somewhere being dissected. In talking with my NSs yesterday, they are very pleased with what they are getting back from pathology so far. We were able to get approximately 90% of the visible tumor and relieved a TON of pressure inside my head. They removed around 6 CM of tumor so this thing truly was a huge monster and I have no doubt we made the right move.

I feel great. I've been up walking quite a bit and it feels good to get out of the bed. They have been quite shocked that I haven't had more pain than I have. By Tuesday evening I was taking nothing but Tylenol for pain and haven't had any more than that since. Even then I don't usually take it every time I can. I'm going 6-8 hours between. I actually have more pain in my neck from stiffness than I do in my head. I'm not complaining though.

The incision is massive and they shaved a lot more hair than I was under the understanding of but what's a little hair... it will grow back. I really could not have asked for a better outcome. Just the fact I woke up with no deficits, thrilled me completely. The fact I'm already up and walking and shocking the whole floor with my progress tells me that attitude and support really does make a world of difference. I don't think I'd be where I am without it all. Attitude truly is half the battle and God and support is the other half. :)

Well, my breakfast should be here any minute and I am starving so I will talk to you all soon. I will have some company today. It really lifts my spirits. I get to see my baby today for the first time since Monday. YAY!!!

Huggles,

-- Amy