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

The Final Post About Surgery

I did forget to mention one thing in the last post... I got to take a shower on thursday!!!!

Ok, so it isn't really surgery any more but it's the hospital which is bad enough. I was determined the whole time that I would be released on Friday the 13th. I did not want to spend any more time in the hospital than I had to. The day finally came and I was excited because I knew the only one that needed to release me yet was the NeuroSurgeon and I had heard the nurses mention that I was slated to be released on Friday so...

Throughout the morning, I slowly began putting real clothes on. I didn't want to get too far with it until I was officially released but just the thought of putting them on made me feel good. The doctor came in around noon and gave me the official release. However, he wanted me to speak with someone else first so we had to hang around. This is when we first met the radiation oncologist in Chicago. He discussed things like gamma knife and radiation for the tumor that remained. We left at around 3 PM.

We had a nice drive home and made several stops so I could get out and walk (or one of us use the restroom). I felt good really. We arrived at the town near us to get my meds and had a minor headache there because Walgreens didn't have my steroid. (Of course the one that needs to be on a strict schedule they don't have) Luckily, CVS did have. Unfortunately, not only did this put me late getting my steroid but it was almost 9 PM before we arrived home. I just wanted my own bed again. It was a very long day for me and I think I was out within minutes of arriving home. (After we sorted out pillows to try to keep me elevated for the night.)

Well, that brings us to recovery which I will sum up in one post later.

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.

The Last Reminders are Gone

By Thursday morning I was free to reign around and John and I even took a few walks just for pleasure. They had at this point gotten rid of most the reminders of surgery. All the IVs were removed including the ART and vein one. My blood pressure had remained down since they have moved my IV and I was now taking all my meds orally so there was no need for either IV. This was a relief because I could now enjoy my laptop and move around without it hurting even a little bit. I think I promptly sent out numerous emails to friends and family and read some of my yahoo groups.

I also had a visit from my little brother whom brought a good friend and my son with him. It was good to see my son and let him know that I was really ok. We had a good time and chatted for most of the afternoon. They were planning on staying overnight in a hotel so we knew that would be a riot. Anyway, this pretty much sums up Thursday. It was a long, boring day that was made easier to tolerate by visitors.

Oh I almost forgot... another good friend visited me on Thursday. It was good seeing her. I don't get to visit with her often because she lives up in Chicago. *huggles*

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

Flying Through the Various Therapies

After sitting in the chair for a while and proving that I was able, physical therapy came back in and I started the process of blowing everyone out of their minds.

Basically I aced physical therapy and then some. He had me do various things like touch my nose, touch his hand then my hand, move this way, move that, stand on one leg, etc. After doing all of this with no issues he was happy that I was ok and I got to go on a walk. I walked the entire circle of the floor. I also walked backwards, on my tip toes, on my heals, in a straight line, etc. He also took me to the stairs which I took with no problem. Actually he had to tell me to slow down because he didn't want me to fall.

We then returned to my room where I was told I passed and that I could have reign of the floor as long as I was with John. They discussed moving me to another room at this point but in the end we decided to just stay in the little room I was. It was a private ICU room and they had other ICU rooms available so the only downfall to it was there was no bathroom in it. This was fine with me because I had an excuse to go for a walk now and then.

I spoke with a speech therapist and occupational therapist during this time as well. I passed everything with them just as easily as I did the physical. I did learn some exercises to do in order to help strengthen and improve the movement of my jaw. (During surgery they cut a muscle that goes to your jaw.) Oh and I got to draw for one of them... if anyone has ever seen my draw they know how painful that had to be for her.

How About Some Real Food?

The next morning I woke up absolutely starving!!! I hadn't eaten in 36 hours (not real food anyway) and I was used to eating breakfast at around 5:30 in the morning. (That's the time I eat every morning for work.) Here it was after 7 and I was really really hungry. Anyway, before the nurses changed shift, they did switch my IV to my hand and remove my old one. YAY The new one did great and honestly didn't bother me that much.

Some time that morning, (I don't remember the time) my buddy (I'll probably tell about some of my nurses later and you'll learn about him.) brought me my breakfast but I was not happy about what he brought me. It was better than nothing but it was another liquid breakfast. I immediately let them know that I was told I could eat real food the next day and I wanted some. They discussed it with those "in charge" and about 30 minutes later or so my buddy made me very happy. Luckily, John hadn't gone after his own breakfast yet. He didn't want to eat when I wasn't allowed too. (Isn't that sweet of him?) Anyway, my breakfast was scrambled eggs, ham, pancakes, and some other good food. John cut my ham for me since the IV got in the way and I... ok my son loves this story so I guess I will tell it here. Instead of eating it with my fork like a civilized human... I was anxious enough to eat that I actually ate my pancake and ham with my fingers. I called it my right as someone who just had brain surgery. LOL Ok had to let you have your laugh.

Ok I did forget something here. My original NeuroSurgeon had told me I could get up and move around the next day. Well, early in the AM the physical therapist had come in and I had found out that I was only going to be allowed to sit up at a 90 degree angle at some point in the day and it'd be a minimum of Thursday before I could sit in a chair. Well this was not in my plans and I was not going to take that laying down. (No pun intended) Anyway, I used my iPhone to email the assistant to my first NS and pretty much begged him have the two of them talk. I wanted up TODAY!!! About 30 minutes later, the nurses came in, removed the cath, and I was sitting in the chair next to my bed.

So why was I so anxious to get out of bed. My whiplash injury was causing my neck to hurt me quite badly. I was using ice on both my eye (to try to relieve the swelling) and my neck because it was killing me. I actually rated my head pain at 1 and my neck at 5 when they asked me where my pain was that morning before they let me up. Within an hour of getting up, both numbers were at 1. I know my neck and I know what it will tolerate and it had reached its limit.

Alright, so I'm up, I've ate, and I'm happy. Now I'm going to blow them away.

This Woman is A CHAMP!

I just got off the phone with Amy, and if y'all have any doubts let them be quashed. Amy makes The Hulk look like a lightweight!

She had a good night. No news from Pathology yet, or anything about her CAT scan. That makes me think that if there was any thing important to discuss, they would have talked to her this morning.

She had a session with the Physical Therapy team this afternoon. They made her walk forwards, backwards, up stairs, touch her nose.. all that sort of stuff. Checking her coordination and making sure every things tracking correctly. And it is, so no worries there.

Nothing else much to report - she's slept well, walked the hallways a bit today, and is finally eating! I'll check back with her tomorrow afternoon, and update here as usual.

__________

Here is the email that Amy sent out earlier today:

Yes, it's really me but you'll have to excuse any typos cause it's hard to type when attached to a zillion things.

I am doing great. There is very little pain and other that all this stuff hooked to me and my eye swollen shut, I feel like a million bucks. Oh and I guess I should mention I am hungry but I'm still not allowed to eat. :( I am praying for food now. :)

The surgery went great. Anesthesia assured me before I went back that they wouldn't have to use the ones I have trouble with. That was reassuring. I think I was out of anesthesia in about an hour which is really good for me. Last thing I had remembered was them trying to find a mask that would fit me. They had to go with a child one. Then I woke up being asked a zillion questtions before I had even worked out where I was. I remember looking at the clock and it was almost quarter after.. don't know what hour.

The good news is that there doesn't appear to be any deficits and it looks like they will get me to moving in a few hours. YAY!!! I am open to phone calls but no visitors yet because I'm still in ICU. My cell is the best way to reach me.

Anyway, just wanted to put my own words in and let you all know that I really am doing quite well. When it becomes a bit easier to type I'll fill you in on all the drama we've had. :)

Huggles and love ya all.
Amy

Last Post about the 10th

This will be the final post about the day of surgery.

Somewhere around four to six hours after surgery, I was feeling good enough that I started calling people. I called Kat/Kate who was my wonderful blogger while I was out and I think I shocked her a bit... ok I know I shocked her a bit. I think we talked for a half hour or so and it was a nice chat. I also called my boss at work and after playing phone tag for a short while I think it was a relief to him to hear my voice. I enjoyed it.

The rest of the night I was able to get a liquid supper that my lovely husband fed to me since I was having trouble doing it with my nose lower than the table. It tasted good even if it wasn't what I really wanted. I think it was broth, cranberry juice, and I honestly can't remember what else was on there... oh yeah some jello that I left too long so it was melted before I got to it and it was pretty nasty at that point. OOPS. It's ok though. I got enough food to make my tummy happy and the nurses checked on me again and gave me my meds. Then John made his bed, we discussed the fact you could see Wrigley Field from my room, and we went to bed for the night.

I know I was awaken some time in the night for some meds but it was all a bit blurry. Oh yeah, this was when I finally got the point across that my IV was bothering me.

Several Hours After The Surgery

Things had been going really well considering I had just had major brain surgery. I felt really good, seemed to have all my senses about me, and for the most part seemed to be myself and that was confirmed by John and others.

The first day had several objectives with the most important being to make sure that no pressure built up in my head. It seems a bit... interesting to think they were worried about pressure considering the huge amount they had just relieved but the concern is there and that was never going to be a question. In the first day it was typical ICU type stuff. I had an ART line (Arterial IV) in my left arm that didn't bother me near as much as I thought it would. It was there to continuously track my blood pressure, oxygen level, and I think it tracked something else but I don't recall. If they were to take blood I believe they could have taken it here as well so it avoided additional pokes. I guess I won't complain too much about it.

I also had a regular intravenous line in my right forearm that was feeding me fluids, received my steroids when they were required, and gave me pain meds if they were needed... which they weren't so that was cool. I also received injections here for blood pressure whenever that went up a bit. Unfortunately, this particular IV gave me a lot of problems and the injects for the blood pressure were very counter productive. The pain in my arm from this IV was so major that every time they put something into it, I wanted to scream in pain. It was not a pretty experience.

Here are some pictures of this particular one. I'm not sure you can get a true feel for how much it bothered me but maybe you'll get an idea.

It actually doesn't look too bad shortly after having it removed but a few days later the real damage showed up.


The IV probably wouldn't have been as bad if it hadn't taken me so long to get my point across just how much pain it was causing me. In the end, it was finally removed and another IV was put in my hand instead and I never had another problem with the IV other than it just being annoying. *Sigh* Did I ever mention I hate IVs?


Honestly, this picture may even have me looking a bit like a whiner. It's not as bad as what it actually looked. Heck the bruise, two plus weeks later is still this large so it got much larger. I think I have pics somewhere but I will have to find the right ones. Let's face it, post surgery will be a long work in progress for a time to come before I get it where I like it.

Other ICU fun stuff included an oxygen supplement although that one I still haven't quite figured out. It wasn't doing me much good. I was much too hyper and talking way too much for the thing in my nose to do me much good.

And, of course, that first night had the lovely fun urinary catheter since I was unable to get out of bed to go to the bathroom myself. Did I mention I really wanted to get up the first night but they wouldn't allow me to?

I Won the battle... Really

You might not believe me based on the look of this first picture, but this is the picture of the winning fighter in Amy VS the Brain Tumor. Last I knew, the other guy was in a test tube somewhere being dissected and other than a bit of bruising, I'm no worse for the wear. :) This picture isn't major so I'm not going to attempt to hide it but if you are a bit squeamish, I wouldn't blame you for skipping this one. No blood, guts, or anything like that, just a nice ole shiner.

It was taken several hours after surgery but I can't tell you how long. As you can see, it wasn't worth my effort to open it, but I do have my trademark smile. You know I am feeling good if I can smile. (Ok, so it's not my best smile but it's hard to smile when your face is swollen.)

I Was Right All Along

I was quoted many, many times as saying I dreaded the IV more than I did the surgery. As it turns out, I had every reason in the world to. :) I guess sometimes people just know what their tolerance is.

Anyway, I think I left off heading to the C-T Scan. I really wish I could give better details of that scan but I guess a bit foggy wasn't the best way to have your first one. So be it. I'm sure there will be others some day and I will report it in all its glory. It wasn't long (although I'm sure it was much longer than I realize) I was wheeled to C-T to makes sure that there were no developing clots in the surgical area. I remember some lights, a shot of pain killer in my IV, maybe even another shot of nausea med all before they gave me a contrast in my IV for the C-T. I believe this shot is what did whatever happened to my IV. I believe it was a blown vessel but I'm not sure I've ever gotten anything official on this. I just know it hurt like a...

It's just not right that your arm hurts you more than you head just hours after massive brain surgery. Something just didn't feel right there. Who knows, maybe the one thing I feared was in my mind and that's the only reason it happened. I didn't fear like that for anything else and all turned out ok...

The next few hours are a bit blurry and have no idea what order certain things occurred in. I was introduced to my day nurse in the "ICU" and at some point she convinced me to let my parents visit with my hubby. I wasn't keen on anyone visiting there because I was uncomfortable with being hooked up to things. As it turned out, I never left the "ICU" room but everything came off so that was what mattered. I will never forget how good it felt to see my hubby when he walked into the room. His eyes told me solid relief and it felt good to see him that way. I could only imagine what his wait for me was like but from what he tells me, it could have been a lot worse. Luckily, it was rather quick and he was fighting some wireless issues so it kept him busy.

I guess I can finally post the next one with some pictures on just what was seen that first day.

I Can't Be Pregnant Now

I had to laugh, because one of the final hold-ups prior to be wheeled to the OR Theatre was they were waiting on the pregnancy test to return. I had to laugh. At this point, I knew it would be my luck that after over two years of trying to conceive, now would be the time I would make it. Like I told them, at this point if I am pregnant, my only concern is where am I going to live when I get out of here? LOL If I were pregnant at that point on Tuesday morning, then God had every ounce of his hand in it and I knew it so nothing would change anything at that point.

They were finally satisfied with results and I vaguely remember a shot of Benedryl... or at least the talk and then I was wheeled out into an elevator. One of the last things I remember is the Anesthesiologist telling me they were going to give me something to make me a little woozy (sedative I'm sure) and someone shouting the time 7:44 AM. I'm assuming this was the official start time of surgery. I was moved to the OR table and remember something about a conflict between an adult and child's mask...

What turns out to be four hours later, I was waking up to a very strange clock where I could only read the minute hand slipping to the three. How my mind calculated that it equaled quarter after whatever hour it was, I will never know but I knew and that made me smile. My first conscious thought was to lift my left arm up in front of my face and move my fingers. They worked, I was happy. Now for the lower side. Guess what, the left leg worked too. It had to be a success, right?

The next few minutes are pretty blurry but I remember a shot of something for pain and something for a bit of nausea I had. Neither bothered me much. The nurses were asking lots of questions and having me try things but I can't remember much of that. I was afraid at one point of breaking that poor nurses arm though when she asked me to push on it. It seemed like just minutes and the Dr. walked in with information for me. I don't know how much of it I really remember from him telling me and how much was relayed later by John but I remember a story about him telling me it was "about this big" (You can see my hands here right?) and that there was A LOT of swelling. He said my brain just kind of pushed its way out of my head and the only thing I could picture was one of bread rising out of a pan in a too tight space. He said he got to the tumor, cleared what he could (I don't think I remember the numbers 90% at this point but that's what I now know) and by the end it was nice and calm in the skull just like a good little brain. Imagine that... me with a good little brain... I don't believe it. :)

From there, he disappeared, some more cognitive things were run and I was wheeled to an elevator and the post-op C-T scan. I remember being told to raise my head to go in and out of the elevators and for some reason I felt they were rather surprised by my action of it. I guess they didn't really expect me to be able to do it... but I did.

I will discuss the C-T and the headache in my next post.

What You've Been Waiting For

It was Tuesday morning and we left somewhere around 4-4:30 AM to drive our way to the hospital for the day of my morning surgery. It really went rather smoothly and I think we managed to sneak from my friend's house without waking too many people up. Luckily, at that hour of the morning, even Chicago traffic is nearly non-existent. We arrived and checked in, then had to wait for admitting to open so that we could do all the fun paperwork. It really wasn't that bad since most of it I had already completed by phone.

Around 5 ish I was escorted for my pre-op MRI. Not a big deal, just another MRI that I've become very familiar with over the past 9 months. Everything went smoothly and I was escorted back out to my husband after 40 minutes of so and back to the "pre-op" type rooms.

Here, I had to resume the typical of putting of a hospital gown, getting hooked up to IV, and putting on some funky TED socks to help prevent blood clots during surgery. All pretty much went as planned. They hooked me up to some fluids in my IV and some pre-emptive antibiotics and we waited to meet my doctor for the first time.He came in and we talked briefly. Didn't really have much to discuss because I thought most of the questions had been asked by me with my other NS.

I did have some surprises that would crop of later but knowing them at this point in the game wouldn't have changed anything so what's the point? Anyway, I began some itching and light rash just as they pulled the gurney outside of my room. I said "see ya along" to my parents and gave my Love a long hug and kiss, before being escorted to my temporary bed. I also called my son for a brief moment or two just as I promised. Bless him. :)

As they escorted me to the "pre-op" area, they grew gradually concerned with some rash developing and I believe they ended up actually turning the antibiotics off but don't hold me to that. Things were beginning to move a bit faster than I was comprehending and I needed to be on my usual, chipper self not worried about possible complications. In the "pre-op area", I was with a few other groups of patients and spoke with my anesthesiologists. I don't recall their names but they were two very nice young ladies. While we talked, another tech hooked up various electrodes to my chest, legs, etc and I was also introduced to my OR nurse. I apologize to all that I don't recall ANY of their names.Anyway, the anesthesiologists and I spoke about my history with complications and by the end of the conversation I felt very confident just as they did that all would work out great. See, God was shining bright and none of my trouble-makers were in my planned cocktail so they didn't foresee any serious issues. YAY!!!Ok, so that appears like a good size post to start things off and a decent stopping point. I'll do the "pregnancy test", OR theatre, and recovery in the next one. Don't want to overload ye all too much!!!

Out of Surgery and Recovering!

Believe it or not, Amy called me with her post surgery update, and yes I was tickled pink to hear that voice!

Here's whats going on right now. She went into surgery this morning at 7:30 as planned and was in the recovery room by early afternoon.

The tumor was much larger than they anticipated, and the surgeon was able to remove most but not all of it. How much larger the tumor was (than originally thought) is not quite clear - we'll get more details when she speaks to her Doctors. The surgeon did say that the swelling around the tumor was formidable. By the end of the surgery, the swelling was visibly abating.

Pathology is now running reports to find out exactly what kind of tumor it is, and if it is malignant.

Amy's in good spirits. She's lucid and clear, and her normal dry wit. She said she has more pain from the IV (fluids for re-hydrating after surgery, and demerol for any pain) than from her head. She'll be able to receive phone calls into her room tomorrow.

Amy would be typing this instead of me if she could - except the IV is in her right hand and she can't maneuver a keyboard! I told her to let me do "my job" since she insisted I do it in the first place - that comment received a fine loud laugh which pleased me no end.

I will talk to her again in the early afternoon tomorrow. I want to thank everyone for their thoughts, prayers, and well wishes. I think we must have done something right - Amy's surgery was a success!

A Special Birthday Wish Today

I wanted to send a birthday wish you to a friend of mine this morning. I knew when she told me that today is her birthday that everything would be smooth sailing today for my surgery. I know she will be out here a dozen times already so I wanted to make her smile.

HAPPY BIRTHDAY, SHARON!!! *HUGGLES*

We're In the very Beginning

I guess I really need to start a bit towards the beginning. Monday, June 9th, John and I had a fabulously uneventful drive to Chicago in preparation for my brain surgery. We arrived early in the afternoon and had plenty of time to relax and chill as we waited to attend our gathering with friends. We had a great time and it really helped me keep my mind off the impending day.

We met with my good friend Louise and her family before going over to another friends house, Alicia, where we met with her lovely family, Bonnie, Genia, Julie, and of course her little angel MJ. I think John was pleasantly pleased that Alicia's children were around because it kept him from being "bored" with the "FlySisters". It was just a good time with lots of fun talking and it just hit the spot. Alicia served a wonderful meal and I think everyone had a good time. I hope to do it again sometime under better circumstances. :)

I'm trying to think if there is anything else major to discuss from Monday, but I'm not really thinking of anything. I will post a few pics of what I did to my hair in preparation for surgery even though I would later find out it wouldn't do me much good. (Long story and you'll see later)

Anyway, here's your pics and stay tuned for tomorrow when we jump right into surgery day in all of it's glory. :)

We're Counting by Hours Now

Well, it's official... in 48 hours I will be going into surgery. Surprisingly, I'm not near as nervous as I thought I would be at this point in the game. I'm holding up very well... Or at least I would be if I had about half as many things still on my to-do list. I have got a ton of stuff to do today but I know I will get them done. A deadline is a very good motivator. :)

Anyway, this is also my 200th post since beginning this blog. I never dreamed I'd start a blog, let alone get to 200 posts. I guess when you have something like a brain tumor the words just come a bit easier... ok, you're right, to anyone else they wouldn't come easier it's just me.

The plans for the next 48 hours are as such:

• Today we are finishing work on the house and I've got some paperwork I need to print out and get signed.
  
• Sometime this afternoon, we are going to go out and I'm going to get my hair "readied" for the big surgery.
• We are going to have dinner with my parents and brother.
• Monday morning will be family time.
  
• We will leave at noon or slightly before to drop my son off at a dear friend's house.
• We will drive to Chicago where we will meet up with a group of friends to have a mini Flyfest. :)
• We will stay that night with yet another friend.
• I have to be at the hospital at 5:30 AM on Tuesday. Surgery is tentatively slated for 7:30 AM.
• There will be updates as often as possible as the day progresses.
• Sometime early afternoon on Wednesday, I plan on being out of ICU and will be posting to update you all. :D

Ok, so I've got to try to plan the things I can't plan, eh? It wouldn't be me if I didn't.

We are all packed for the trip with the exception of those things that you can't pack until you are ready to walk out the door. With any luck I'm as planned for this trip as any other I've taken in my life.

I will attempt to post again Tuesday morning before surgery if they don't have me so busy I don't get the chance. Just in case I don't... I love ya all!!! *Huggles*

We Are Currently In Iowa

And I finally have some internet connection. :)

We had a fabulous time in Ohio over the weekend. The weather was perfect and the lines were very tolerable. I think the longest wait we had was 45 minutes which is pretty amazing numbers. We rode each and every one of the roller coasters that were available to those above 52" in height. Top Thrill Dragster is awesome but the Millennium Force has taken a spot as my all-time favorite roller coaster. I have never ridden something so amazing and I truly never believed that a roller coaster that doesn't even invert you would ever become number one for me. If you ever go to Northern Ohio, I highly recommend you check out Cedar Point. We stayed at the Breakers Express while there and you really can't beat it. We pretty much could go in and out of the park as we pleased (after buying tickets of course). The only down part of the trip is we felt it was too chilly for Soak City but it's ok. We had a blast!!!

This isn't to say that the entire trip was without a hitch. We had to deal with a really nasty accident shortly after we hit 80 that delayed us by an hour on the way over. We also had a moment or two of panic when we managed to lose both sets of car keys... John takes the blame so don't look at me. Then on the way home we missed a couple of exits and got stopped by yet another accident. We then had to worry about the weather and what we would hit on the rest of the trip. We arrived home about 7:30 PM and I immediately started a load of laundry... It got about half done before we lost electricity for the night. All seems to be safe though. We did get 3" in about 24 hours according to what we are seeing.

Anyway, now we are in Iowa. John is in training Thursday and Friday so Jazer and I are hanging out at the hotel today and who knows where tomorrow. I have some errands to run tomorrow so hopefully I can find out how to get to them and do it without getting lost. With any luck, John's training will be over no later than 4 and we can get back home to a weekend of house cleaning and laundry...

I will touch base with you all again before Tuesday but don't look for to many entries the next few days. *Huggles*

The Countdown is in Full

Well, it's to the point now that I officially feel comfortable counting down by days instead of weeks. LOL 13 days to go. I guess it's just my lucky number that is making me feel this way. :D

Anyway, this week we are busy packing for our busy next few weeks. We will be spending four days in Ohio at Cedar Point riding roller coasters until my face turns blue and then IOWA later in the week where I will have no interruptions to finish some paperwork. Then the next week it's up to Chicago for surgery. I'm just ready for it. I want it to be over not because of the surgery but because I'm tired of dealing with other things. (I'd rather not get into it right now.) I'm very ready for the surgery and that doesn't bother me a lick. I know it's the right thing I just sometimes wonder why God has given me other things to annoy me while I prepare. I thought he wanted me to be strong and set for this but apparently he is trying to teach me a lesson that I just haven't yet figured out. Maybe that lesson will reveal itself before surgery and maybe it won't. Either way, I know what I must do and that is learn some tolerance. Tolerance to accept that not everyone thinks or feels the same way and we have to accept that difference even if it is showing itself in a situation you should have a say in.

Ok, enough of this. 13 days and counting. WOOHOO!!!

Kat out of the bag

I just wanted to follow up with the last post. I know that you will all be in very good hands with Kat... errr Kate. I know some of you have seen me refer to Kat before and she is the best. :) We've known each other for quite a while now and she has been one of my big supporters as I have gone on this path. I think we are both on the crazy side and feed off of each other very nicely. As you saw with the fruit basket reference, we have both found a way to keep things light even when talking about a major subject. That's just the way we are and when you are dealing with something like a brain tumor, attitude is everything.

Anyway, Kat is a bit nervous about writing to all of you but I know she has nothing to fear. You guys will probably never even notice I'm not the one writing it. I hope you all show her plenty of support in the writings. The more you give her and I love, the more frequently you will probably get updates... although she can only update when John calls her... LOL Although if you sweet talk her enough you might get some more crazy stories about me. :)

Well, I just wanted to follow-up and let you all know that I am here and getting ready for the big day. Love ya all. *Huggles*

The Fruit Basket

I wanted to introduce myself as Amy's co-blogger. My name is Kate and I'll be updating Amy's blog when she's in the hospital and immediately there after.

I've been putting off this introduction for months! I never really knew what to say about myself, and thought I wouldn't have to step in for quite awhile. Wrong! Amy's surgery looms, and I better get on with introductions.

I live in Minnesota, Land of Perpetual Snow. Married, no children. Total city girl. I love knitting - projects that fill many a free hour, or the search for more yarn (you can never have enough yarn!). A job in a cooking store lets me talk and pursue my other love, food! I love to cook, eat and talk about food. I think scoping out the local farmer's market, or trying to make the perfect souffle, fun! Give me a French recipe for Crème brûlée, and I'll happily spend hours perfecting the recipe. A chihuahua named Stanley rounds out my life - he who thinks he's the biggest, baddest dog in the neighborhood!

Amy and I met many moons ago online. We share the same sense of absurd humor, sensibilities, and love of life - spending many a happy hour discussing gardens, husbands, and her disgusting choices of alcoholic drink.

We've giggled about the silly and not so silly, finding that humor helps in any situation.
__________

When Amy first told me about the tumor last year, I was shocked. I had a hard time accepting that someone so dear, so vital, so intelligent! could have this nasty diagnosis. And me being me, I needed all the details - how big was it, where was it, what now?

Amy patiently led me thru the mire of information, her decisions, the ups and downs of MRIs, blood work and all the other details of "The Fruit Basket."

The Fruit Basket. Funny term eh? Its comes from one of the very first conversations we had about the tumor. I wanted to know how big it was, and she told me in very technical terms the millimeters and position. Here's the conversation from that time:

Kate: Well, I don't understand. Is that like the size of a grape?
Amy: Well, maybe a little bigger.
Kate: A plum?
Amy: Maybe like a half an orange. Its hard to tell whats the tumor and whats the swelling.
Kate: Not a half an orange! Thats like... well, big! Maybe its a cherry. Or I prefer half a plum, thats smaller.
Amy: It could be a pineapple. Who knows until the tests come back.
Kate: Crap! You've got a freaking fruit basket up there!

We've referred to it as The Fruit Basket ever since that day.
__________

I originally pressured Amy to start this blog as a way of getting information to friends and family, and as a way to connect with other people who have tumors. More importantly though as a way to express herself, and voice her fears and frustrations, to let off steam and stress. I pestered her for a week, maybe two, before she finally dipped a toe into the world of blogs.

I'm very happy she did.

She made me promise when she started the blog that I would take over for her if she were unable. She thought that I would be able to keep a level head, get information out to her friends and family via the blog in a timely manner following the surgery and hospital stay, and keep my sense of humor throughout it all.

Thats a very tall order. But I aim to try.

The News Made My Day

I had a wonderful conversation with my NeuroSurgeon on Wednesday. I was able to take care of all the lingering questions that were still fighting in the back of my mind, get the details that I so longed for (yes I'm weird like that), and finally be able to step up knowing I've done what I can to be prepared.

So what did I learn? Well, I learned what will happen the day of surgery in detail. I won't share this information right now but I will after surgery is all over. He did a good job of walking me through from the pre-surgery MRI to what I have to do to be released (more appropriately who I have to get approval from) and finally to what recovery will probably be like. I learned about the pain medications I will be given, what things will occur in order to get the equipment I so dread off of me, and who I will be meeting as we move along. So it was a very good conversation and it was able to finally put that last shred of doubt from my mind.

Ok, I know you are asking yourself, "Surely this isn't the news that made her day. It would probably just terrify me more." And you would be right. So what is the news that made my day... Anyone that knows me can probably take a wild guess at what it is... Go ahead... do that now... Anyone??? I'll give you a hint... I'm doing this very thing the week before surgery?!?!? Ok, fine, he told me that I can ride roller coasters after I am feeling good again. :D That is such wonderful news because I really questioned whether he'd give me the go ahead. I figured it would be a bit risky but he pretty much said if I am feeling up to it and I'm crazy enough to get one... Go for it!!! That was such wonderful words to hear. I keep telling John that I'll start out tame... I'll go for the Ninja at Six Flags instead of anything else crazy like the Raptor at Cedar Point. LOL

Anyway, just wanted to share.

Oh, and did I mention that I just love my NS? He's fabulous and I am positive that I've made the right choice.

The week in Review 5-23-2008

We are getting closer to the time and things are finally starting to line up now on this day 9 months since my tumor was discovered.

Medically - Things are finally falling into place. I will be going next Tuesday to have all the pre-surgical testing completed. This will include a chest x-ray, bloodwork, and an EKG. Not a big deal, I've had all of them performed before and some of them I've had numerous times. The good news about it is that my arm should be feeling good again before we leave on vacation. :D

I also have an appointment set with my GP for the following Wednesday. This will be my pre-surgical physical. Again, it shouldn't be anything out of the ordinary. It will give me a chance to talk with him as well and make sure we have all of the right connections in place.

I also had a nice and long conversation with my NeuroSurgeon on Wednesday. He answered some of the still remaining questions I had and by the end of the conversation I was even more confident that I had made the right choice. When you have a brilliant doctor, it is much easier to start a road you know will not be easy.

And last but not least, the date of surgery has been confirmed. I have to be there very early the morning of June 10th.

Emotionally - This week truly tested my emotional resolve. Things are falling into place and it's no longer an option to wonder if this is really going to happen or not. I WILL BE HAVING SURGERY... that slapped me across the face a few times this week. However, my emotions have remained intact and that is very important for me. I am not an emotional person. I'm the one that is always strong and focused when others are starting to lose their head. I am the one that can see the positive in a bad situation. This is who I am and it has served me well over the past 9 months. If I did not have this will and determination... this personality if you will, then I probably wouldn't be typing this out to you today because instead I'd be a nervous wreck sitting with my head between my knees in a corner somewhere. I am not the type of person that can do that. Because I have the control over my emotions that I do and because I have the outlook on life that I do, I'm standing tall and proud and ready to get this thing out of my head.

With all that being said, I did have to rely on my friends and John a few times this week to keep me steady and focused. Sometimes it's just a word or two, sometimes it's a full out conversation, and still others it's simply a hug but it keeps me focused and moving forward.

My subscription to a group who has become sisters to me, officially expired today. I will miss them all deeply. We have been through a lot together from infertility, to pregnancy, to losses, and more. They have been a huge support to me but it is time to finally close that chapter of my life. At this point in time, John and I's journey to have a second child is over and it is time to move on from that. However, to any of my friends from Fertility Friend that are reading this. I will miss you all and I hope you keep in touch. *Huggles*

Last Saturday also marked a step that was a huge change for me. As most of you probably saw, I cut off 12+ inches of hair. My hair is now the shortest its been in my memory. The last time I took a large amount of hair off it was actually about 2" longer than it is now so this has been pretty dramatic. However, it is a change that I am embracing. Everyone has been thrilled with my hair and thinks it looks wonderful. Once I get used to it, I'm sure I'll feel the same way. However, for now, I'm focusing on getting used to it so that I'm good and comfortable with it before surgery. It will be a 100 times easier to care for now in those post surgery days and I have a wonderful plan as well for what to do with it to make the time before I can wash it much easier. (You'll just have to wait and I'll post pics before I go in.)

Finally on the emotional side of things... A friend of mine whom I met when my baby brother began dating her, actually managed to bring me to tears a few days ago. Don't worry, they were happy tears. Anyway, they are no longer together but her and I remain friends and she sent me a message that one way she could support me in this venture is to not make me feel as crazy with my short hair, so she chopped hers off as well. She looks beautiful. Yes, I know, many don't feel that my hair is short at all and I guess technically it isn't, but it is very short to me. Anyway, it was just very sweet of her and now we could almost be twins. LOL (Actually I think hers is a bit shorter but that's cool... it looks good on her.) *Huggles*

Mentally - Despite times when I've struggled to focus this week, my energy cycle has regulated itself again and I am thankful for the burst I have received. I am quite satisfied now with the progress I have made. I still have a ton to do but I feel I have a manageable plan now.

This week I also touched base with a few neighbors. One of my neighbors was previously aware of what was going on. She is my walking partner but things have been so crazy that I haven't been going. I feel bad about not getting in touch with her but things have just been crazy. Anyway, she has agreed to feed my cats while we are gone so that's one less thing I have to worry about.

The other neighbor I got in touch with did not yet know about what was going on. We talked for several hours about what was going on and it felt good to connect with them the way I did. I really enjoyed our conversation and again regret that I hadn't gotten in touch with them before. The few times I tried didn't pan out for various reasons but in the end all is well.

Physically - I am hoping that the return of my natural energy cycle is not hindered by the fact I am now coming down with a cold. Yes, a cold. Not a good thing to have developing this close to surgery. However, as long as that is what it stays as, I should be fine. The drastic weather changes over the past several weeks and the stress that creeps up no matter what, has not made it easy to keep it away. My goal now is to just keep it from becoming bronchitis and a sinus infection. That would probably majorly delay things since I am usually out for weeks when these things take place.

Family - Things are going about as they did last week. My son is hanging in there and doing well. He's excited for school to just about be over.

John had a few rough patches this week but we are good about working with each other to pull ourselves up. I know it is harder on him than me. I have said it many times before that I am glad I am on this side of the picture and not in his place. I know that the hardest moment so far in his life will be that time I am in surgery. That's just how close we are. However, I know that seeing my face when he comes back to ICU will brighten him up and he will be greatly relieved. Our love is strong, we'll get through this. :)

Play - Dance was very nice Saturday and I enjoyed it. I will deeply miss dance over the next several months. Everyone there is so wonderful and I will miss them. I will check in with them when I'm feeling up to it.

Well, I think that wraps this week up. Lots of info in this one. *Huggles*

Starting to Line Things Up

Well, we haven't made any huge progress yet but I have got my pre-surgery testing all planned now. I have a physical and further tests scheduled with my GP for Wednesday the 4th. Not sure what all they will require (I was preoccupied when the nurse called for the rundown) but I did catch bloodwork, physical, EKG, and chest x-ray. We'll see what else gets put on that list. She mentioned other things that I didn't recognize but she said they were bloodwork so we'll see what happens. It's definitely getting close and this appointment makes it very much reality. Should be an interesting appointment in between my two vacation dates. LOL

Anyway, just wanted to drop this information. I am hoping early next week we will have everything finalized as far as the date and time go. *huggles*

Three Weeks and 12+/- Inches

Well, we are now at the three week mark until surgery. Time is going by REALLY fast. Anyway, Saturday I took a big step towards making things easier for surgery. I cut off 12 or so inches of hair to donate to Locks of Love It's a huge change but everyone seems to like it. As I told John last night, "The jury seems to like it but the judge is still on the ledge." :)

I'll let you all be part of the jury as well. First you have the before pictures:





















Now you have the after pictures:




















As you can see, it is a huge change. For those of you that know me, you know just how big of a change it really is for me. The last time my hair was even close to this short I was in the 7th grade and it was still about 3 inches longer than it is now.

So what's the verdict? :)

The week in Review 5-16-2008

I'll be posting this late but I started it Friday. I just had enough going on that I didn't have time to finish typing it up until Saturday morning.

Medically - Other than fighting allergies, things have been on the quiet side medically this week. My allergy meds are only partially fighting it but it's no wonder with the weather changes we've been having. You can't expect anything to fight the impossible.

Emotionally - I was about the same as last week. I've had a few spells where I've just started rambling to whoever was around to listen but I think it's all to be expected. I've pretty much come to terms with the surgery and the like, it's more people that I'm struggling with now. There's just some things that no one understands about me and there's no way of making them understand so I just have to bite my tongue and deal with it on my own time. That sucks. It really does.

Mentally - I did make some progress this week but further was hindered thanks to my energy cycle being off and therefore I'm not sleeping too well. Typically I have two major spurts of energy in a day (early morning and late afternoon) then I am well ready for bed by 8 AM. However, recently my spurts have been early morning and late evening causing me to be anything but ready for bed until almost 10. I finally force myself to go to bed but then I wake up around 1 thinking the night is over and I'm ready to go again. This would be fine if I didn't have to get up at 5 AM to go to work all day and could take an afternoon nap or something. Many believe it might be subconscious anxiety that is causing this change. I don't honestly know because other than a few scattered times, I've been doing remarkably well with the anxiety. (Better with this than I was with things that didn't matter this time last year.) Anyway, I am continuing to move forward and if I can get my energy cycles sorted out I may be able to finish all the important stuff yet.

Physically - Basically I think the previous paragraph explains all of this.

Family -It has been overall a pretty decent week. We had a nice evening Friday night for my little brother's graduation from college. Yep, he passed me up. He got his bachelor's degree. That's cool with me. He deserves it. :)

I think everyone has been enjoying the week at our house. My son finally finished his room so he was officially ungrounded from video games and has been loving the fact he is back on them. However, I think things are starting to reach him a little bit. It seems like he frequently looks at me and says "Mommy, I love you." for no real reason. I think it's cute but I hate that he has to be worrying about me. It will be over soon enough.

John has been in a very similar position. I know he took off early one day this week because he just couldn't concentrate. Truth is, I left about an hour early one day as well. However, we are hanging in there, enjoying planning out our vacation to Ohio, and just enjoying life. :)

Play - We hope to go to my last dance before surgery tonight so that will be an interesting event. Beyond that we've not been doing a whole lot.

Well, I'm going to wrap this up because I have some work to do. *Huggles*

Four Spokes of the Wheel

I hope the title of this post makes sense once you read through this. I guess I've just been in one of those emotional states lately that it feels I have to justify every decision I make. I know that this is because of some "unfinished discussions" that have taken place and will probably never be brought up again but I just feel the need right now to prove that I am a mature adult capable of making my own decisions even if some feel I do not yet have the "life experience" to make this type of decision.

(Ugh, sorry that sounded way more irritable than I intended but I still think it's good.)

Since I was first diagnosed with a brain tumor, I have used every resource possible to determine what the "right" decisions are. I am not one nor will I ever be one to blindly accept answers given to me by doctors. I believe they don't call it practicing for nothing. A doctor is no different than you or I, he has just been trained in a specialty. (Just as you are probably trained in yours) I value the knowledge and training they bring to the table. Trust me, I wouldn't want just anyone working on my brain so I value their training wholeheartedly. However, I also know that there is no professional in any profession that knows everything there is to know about it. In most areas you are either the "Jack of all trades and the master of none" or you are highly specialized in one specific area. (For instance, I am the Jack of all when discussing computers but I am highly specialized in Microsoft Office.) All this means is that a doctor does not have all the answers nor are they necessarily intimate with all the options.

With that said, I have based my decisions and research on four areas or spokes if you will. Medical professionals, Internet research, Blogs, and Support groups (particularly online). Each area brings something important to the table. A well-informed decision could not be concluded without all four areas. Now let me explain a bit about each one.

Medical Professionals - These guys bring experience, education, knowledge, and the specifics to you. They are the ones that can tell you that your MRI appears to be a 4cm tumor with blah, blah, blah. They are the ones that can give you the technical details to the questions you have. Of course, they are also the ones that will provide the treatment you receive. However, other than the rare cases where a doctor is also a brain tumor survivor, they can not tell you with experience things such as: How painful will the surgery be? How hard was it to get a brush through your hair? Will there be personality changes? Yes, they can give you the "text book opinion" but unless that person has actually been in the shoes of the patient, they can't give you first hand knowledge. I wouldn't want someone who has never built a computer before to walk me through it. I'd want someone who has first hand experience at it. The other limitation with doctors is they only have experience with what they know. And that's the case in all professions.

Internet Research - The internet brings the knowledge gained from any place in the world. You can tap into medical information from China or review experimental medical procedures in the UK. You might "stumble" across something that you doctor has never heard of yet might be that "miracle cure" you are looking for. However, the Internet has its flaws in that you can't always believe everything your read. Sometimes things that are merely opinions come across as facts. However, you wouldn't even know it's possible without seeing it. You then take this information back to your doctor and you never know. (Remember I would have never been introduced to Gamma Knife if I had not used this avenue. Yes it ended up being not an option for now but it is still something to tuck away for the future.)

Blogs - The day to day roller coaster that is the world of brain tumors. Blogs give you that inside look on what is really going on in the world of a brain tumor survivor. Sometimes they are hard to read because it tears you apart to see what they are going through. Sometimes it makes you see which path makes more sense. Still other times it makes you realize that this thing can be defeated. A blog is a first-hand perspective on what the future holds. I can't go to blogs and ask questions. I can't get explanations of major medical issues. I can draw strength from them, understand things I may be going through, and understand what is normal.

Support Groups - I have two main groups of support. I have the "patients" and the "supporters". The patients are my online support group. They are the ones I can ask real questions to and get honest answers. These guys have gone through it. They aren't reading the answers in a book or giving an opinion. They KNOW how painful a procedure is or what the undocumented side affects are because THEY HAVE BEEN THERE. They have already been where I stand today. If a doctor tells me something but my support group says something else and it is related to what the patient deal with... I guarantee you that I will take the opinion of the support group. In my feeling they are the plain and simple no holds barred truth. They are not in it for anything but to give answers. If they say something that convinces you to not do a treatment, they are not out hundreds of thousands of dollars. If a doctor does, he's out money. So tell me, which one has reason to not tell you to gory details?

The supporters do not add brain tumor knowledge but rather they give their thoughts on the situation but regardless of what you decide they give you their full support. These are very important people. They don't push their ideas on you, they don't tell you what to do, they don't pretend to know what you are going through, and they don't get mad when you don't include them in an important decision. This makes these people extremely important because they realize that the only one that can make these decisions and the only feelings that matter are yours. They make a patient feel special because they don't have to justify their decisions and they are allowed to maintain their privacy and dignity because the person understands that the patient is what is important not them. As you can see, I wouldn't be writing this entire post if everyone around me fell into this last category.

These four spokes are put together by a wheel. The wheel is actually more than just one piece. It is me, my caregiver (John), and God. God makes sure I am able to find the information available to me, he assures me that I am on the right track, and he guides both John and I's heart.

Anyway, I hope now you can see how each of the four spokes makes the wheel go round. Each is important and without all of them, I would not be able to make the decisions I have. Knowledge is power and that knowledge is found in many different places. Sometimes you just have to be willing to look outside of the box.

I'm sorry this post ended up a little on the bitter side but I just felt some things needed said. I'm sure the people this is directed to will never read this but if they do I hope they are able to see where I am coming from. I am not making a "fly by the seat" decision. I have not taken the first opinion I hear and running with it. I am making a decision based on every fact I can lay my hands on and sometimes it is hard to accept that even someone as young as I am can make life altering decisions.

Ok, time to wrap this up. *Huggles*

A Roller Coaster Fans Dream

Ok, I promised that I'd talk about our trip for June. It will be a blast and I can't wait.

We will be leaving on Saturday, May 31st to drive to Ohio. Sunday and Monday we will be visiting Cedar Point in Sandusky. Cedar Point has some of the greatest roller coasters in the world. My plan is to ride each and every roller coaster at least once. :) Have I ever mentioned that I love roller coasters? I'm seriously not sure if I have.

Anyway, then we'll drive back home on Tuesday. Wednesday John and I will go back to work for the day. It will be my day to say "see ya later" to all my friends at work. Then Thursday and Friday John has training in Iowa so my son and I are going with and will enjoy some quiet time. Not sure what all we will do yet but I'm sure we will come up with something creative.

I personally think it will be a fabulous week so I'm really looking forward to it.

We haven't gotten everything fully worked out yet but I also hope to join up with some online friends while we are in Ohio. We've met some of them before but one of them we've never met. We'll see if the plans pan out or not.

Anyway, there's the trip I mentioned and I can't wait. If you are curious to see why I am looking forward to it so much, here's their website, check it out: http://www.cedarpoint.com/

The Week In Review 5-9-2008

Ok, so this is Sunday morning and I'm just not posting this. I apologize heavily for not putting reviews in for the last month. I've just been super busy and the weekly review was one of the things that fell off the world. :) So here it is... for the first time in May:

Medically - I had to see my chiropractor again last week after my neck didn't recover from our parent/child soccer game the week before. He was able to get me mostly back into line. My allergies have been going hard and heavy the last few days in particular. Even my allergy meds aren't keeping the semi stuffy nose and itchy watery eyes from developing. Tis the season. I'm just hoping at this point to let it run its course so that by the time we go on vacation the first week of June, it is all over with. I don't think there is anything else going on medically.

Emotionally - It was overall a rough week in the emotional front this week. The five week mark on Tuesday hit me like a ton of bricks and the one month mark yesterday caught me out of left field. As I was telling John last night, it's not really that it's one month away OMG... it's that I only have one month to finish doing what I need to. Beyond that I did have my moments where I asked myself what in the world I was doing. I guess sometimes I pop back to the, "You are not having problems so why are you doing this," thinking. I guess it's to be expected. However, I do think I am doing the right thing. My mind is set on it and I'm as ready as I'll ever be for it. This is something that really needs to be done so that a truly bad timing doesn't jump in instead.

Mentally - I think I've mentioned the "hard deadline" before and I seriously thought the one month mark would be a big motivational spot but that is backfiring on me. Yesterday I didn't get even a portion of what I needed done and it was this thinking, "I'll never get it all done so why bother". In one of my groups we call that "stinking thinking" and I am going to do my best to keep it away and still focus on the important things. I need to sit down and reevaluate the goals of what needs done and when. It seems there just isn't enough "good energy" hours in the day. Otherwise, things are really going like every day. Which is good because I miss the everyday.

Physically - I've been pretty tired most of the week and it's a combination of allergy meds and my natural physical down. I've tracked my swings for long enough that I know when my energy levels are going to suck (times of day, month, and year) and when my energy levels will raise. I have to just remind myself that you can't fight nature. Anyway, I look forward to my natural energy rise mid to late next week. I should be able to make some positive forward progress so hopefully this is just want we're waiting on.

Family - Well, we have had a good month. We've spent a lot of time together as a family and just plain having fun. The parent/child soccer game was a blast and I really enjoyed spending the time with son. He kept saying, "You better watch my mom, she's good." LOL I don't know where he got that idea since I had never played soccer other than PE but I think it's pretty cool all the same.

He is doing really well in school. The grades aren't as high as I'd like but he is trying and as long as he is doing his best, I'm not one to complain. I've reminded him that he has to meet certain requirements if he wishes to play any school sports and that is what he is working towards. I've also told him if he meets certain requirements this last quarter, than I will get him a month long sub to the game we all play. So he is working particularly hard towards that.

John is very busy right now. They are smack in the middle of planting season and this has been a particularly busy season this year. He's put in a lot of hours but he is doing a lot at home as well. He finished my computer desk units so I'm finally able to finish the computer room (minus the few pieces that aren't critical). He has also got our lawn mower ready to sell. If anyone in my area is looking for a riding mower, let me know.

Beyond that I think the one month mark hit him pretty hard as well. I've been reading a lot of things on "Carers" the last few weeks and I will just repeat that I'm glad I'm the patient not the carer. I know it's got to be hard for him but he is doing very well. I've told him he can always use my blog if he wants but he's not taken me up on that. He's not near the communicator that I am. I can sit here and "talk to myself" all day but he would rather not. Don't worry, when I'm out I have a friend who will be updating my blog until I can get back to it. You guys will be updated. :)

Play - Well, my son's soccer season is officially over. Their record ended up being not great but they did have two ties. He loved playing though because he learned a lot about being a goalie and he really enjoys that position. Yesterday, they had a soccer clinic that is run by the high school coach. He had a really good time and learned several things. He left the clinic telling me that he definitely wanted to continue playing soccer and that he may even play in the Pros some day. I'm just glad to see him finding something he truly enjoys. So, now I need to stay on the ball and make sure I get him in every opportunity I can for soccer between now and high school. His high school is on the large side so he will have to work very hard to make the team but I know if he sets him mind to it he will.

We haven't been dancing in a very long time. :( John has been late getting off of work and by the time he takes a chill it's just not worth going. Six days at work just wears him out so much that it's hard to consider anything else in there. We will go to next weeks dance and then I'll have only one more dance before I have surgery. Yikes. I shouldn't think of it that way.

Otherwise, not sure that we've been doing anything specific in the Play category. 4H is over for the summer and my son will have to work on his projects but otherwise it's just normal days.

We are working towards our plans for the first week of June. I think it will be a fabulous vacation even if it is a bit short. I'll post all about them later this week.

Well, I think that pretty much sums things up.

Just Wanted to Send a...

Brain Tumor Awareness Week - Wrap-up

To wrap up this week on Brain Tumor Awareness I wish to give some statistics on what is going on in the world of brain tumors.

More than 200,000 people will be diagnosed with a brain tumor this year. Most of these tumors will be metastatic tumors that come from cancer in other areas of the body. However, 40,000 of these tumors will be primary brain tumors.

Brain tumors are the LEADING cause of death in children under the age of 20 and the third leading cause of death in young adults.

14 of every 100,000 people will be diagnosed with a primary brain tumor. (Not tumors coming from cancers elsewhere.)

Brain tumor research is severely underfunded and the survival rates remain significantly lower than those of other types of cancer.

Now I have a question for you and if you are so inclined, I wish you to post a comment with the answer. Other than what you have read in my blog or for those that know me in person what you have heard me say... how many times this week did you hear anything on Brain Tumor Awareness Week? Now tell me, how many times a week do you hear things on other cancers such as breast cancer?

Brain Tumor Awareness Week - Staging

Brain tumors are classified according to the WHO (World Health Organization) system.

Tumors are classified by observations made concerning the appearance of the cells, its tendency to infiltrate into other areas and, its rate of growth. The classification of brain tumors is primarily an observance by a neuro-pathologist and can be classified differently by two different pathologists. Therefore, classification is not always easily determined. Furthermore, a single tumor can have cells of multiple classifications. In this case, the entire tumor is classified as the highest discovered grade found.

Benign Tumors

Grade One

A grade one tumor has cells that are mostly normal in appearance. The cells are extremely slow growing and are even sometimes classified as a birthmark within the brain. The long term survival with a Grade One tumor is extremely good.

Grade Two

A grade two tumor has slightly more of an abnormal look but still appears mostly normal. This type of tumor has the potential to invade into other areas of the brain but are mostly of a slow growing type. A grade two has a much higher tendency of developing or recurring into a higher grade tumor.

Malignant Tumors

Grade Three

A grade three tumor is actively growing and comprises of mostly abnormal cells. It has the tendency of invading surrounding tissue and has the strong possibility of returning as a higher grade tumor.

Grade Four

A grade four tumor is the most aggressive type of brain tumor. It is made of abnormal cells that reproduce at a very high rate of speed. This tumor rapidly invades surrounding brain tissue and actually produces its own bloodflow so it can maintain its rapid pace.

As you can see, there are very distinct differences between the benign and malignant tumors. One of the things that should be noted about the malignant tumors is that they are usually shown as enhanced in MRIs when given a contrast injection. This means they take in the gadolinium very quickly and therefore appear brighter in the MRI.

Brain Tumor Awareness Week - Benign

In continuation of the Brain Tumor Awareness discussion I would like to address the word benign in relation to brain tumors.

With tumors found in other areas of the body, the word benign is the best words that you can hear. With tumors in the brain, benign just means you have a different set of obstacles before you. Let's first explore, what is a tumor?

A tumor is an area where there is growth of normal or abnormal cells beyond that which is necessary. Typically a benign tumor is made of normal cells that reproduce very slowly. A malignant tumor is made of abnormal cells that can quickly reproduce.

A tumor in the brain can put pressure on very sensitive areas of the brain, causing a wide variety of symptoms. Because of this, a benign tumor in a sensitive area of the brain can cause just as much damage as a malignant tumor in a "safe" area of the brain. This is what causes benign tumors of the brain to be just as deadly as those which are malignant. It's a phenomenon that is unlike most other tumors found in the body.

A good thing about primary brain tumors (tumors that originate in the brain) is that they very rarely spread outside of the brain to other areas of the body. Occasionally a brain tumor will spread down the cerebral column into the spinal cord but it is extremely rare for it to extend beyond that.

This information is why even a benign tumor should be removed if it is in a location that is "safe". In most cases, no further treatment is needed beyond surgery for benign tumors, however, with a primary brain tumor's tendency to change grade and return, the patient should be watched for the rest of their life following the discovery of a brain tumor.

Brain Tumor Awareness Week - Signs

In honor of brain tumor awareness week I am going to make a few blog posts that are along the lines of awareness. So here goes the second in the series... Signs.

The signs of a brain tumor a wide and varied. Remember that no two tumors are alike and therefore no two people will experience the same symptoms... or in my case any symptoms at all. Here are some of the common symptoms that eventually lead to a brain tumor discovery:

• Change in headaches
  
• Headaches that become more frequent and severe
  
• Headaches that are worse in the morning
• Vision problems such as double vision, blurred vision, or loss of peripheral vision
  
• Loss of sensation or movement in the limbs on one side of the body
• Balance difficulties
• Nausea or vomiting with no apparent cause
• Speech problems such as slurred speech, using words out of context, or the inability to find the appropriate word
  
• Personality or behavior changes
• Confusion
• Seizures
• Hearing loss
• Memory loss
  
• Any of the above symptoms in connection with a headache

These symptoms are also common in many other illnesses. If you experience any of the above, you should seek out your doctor so that tests can be run.

I'm on the Right Path

As much as I sometimes have my doubts that I'm on the right path, I know with subtle pushes from God that I am on the path he wants me to be. He is with me each and every day and he is giving me the gentle nudges I need when they are most needed. He has been determined to not give me the "painfully obvious" sign that I have looked for from day one but I have no doubt that he is giving me the signs I need when I need them to push forward. How do I know?

I have had thoughts of changing my mind a few times over the past few weeks. When things don't lay into place the way I want them to and my mind gets into a "what in the heck am I doing?" phase. Well, each time I get this way, God sends someone or something my way to gear me up again for the fight. It's like when a team has lost heart and out of no where the fans start cheering. It gears them up to go out there and fight again.

Last night, it was a call from a tumor buddy. I was really struggling and really ready to back out but my tumor buddy called me out of the blue. We talked. We discussed surgery. We discussed our thoughts on diagnosis. Through it all she reminded me that she is happy that I am doing this because she worries about what may be going on up there. I guess that is the kind of kick I need now and then. I have said from day one that I don't give a rip what is in my head. I really don't. Whether it is a grade one or a grade four I don't care. But I know that there are many people out there that are worried about what it is. They need to know so they know how to help me. Truthfully, I know that I need to get ahead of this thing and get it before it gets me but that doesn't make the decision any easier. That's why God has sent me angels each time I need that reminder.

Besides, His angels reminds me that he is holding me during all of this and that he will be right there beside me through it all. I will get through this with the help of God and all of my angels. Some signs don't hit you upside the head but are given to you gently and silently. *Huggles*

We're at Five Weeks Now

Five weeks from today is our planned surgery day. Am I nervous? Yeah, I'd have to say I am. Am I ready? Not really. I still have a lot I need to finish. Am I going to beat this thing? Hell Yeah!!!

It's been a somewhat rough emotional roller coaster the last week but I'm as ready to tackle this thing mentally as I'll ever be. I sometimes have my doubts but, who wouldn't?

Brain Tumor Awareness Week 4-10

This week is National Brain Tumor Awareness Week. I hope everyone thinks about and supports the cause this week. Spread the word. Brain tumors are out there and if you know someone who has one... let them know you are thinking about them this week.

• Each year approximately 40,000 people are diagnosed with at primary brain tumor. These are tumors that come from the brain rather than are travelers from cancers in other areas of the body.
• There are over 120 different types of malignant and benign brain tumors.
• There are no known causes of primary brain tumors.
• The cure rate for most types of brain tumors are significantly lower than that of other types of cancers because it is severely underfunded.
• Males have a 0.66% lifetime risk of being diagnosed with a primary malignant brain tumor and a 0.50% chance of dying from a brain tumor.⁽⁶⁾
• Females have a 0.54% lifetime risk of being diagnosed with a primary malignant brain tumor and a 0.41% chance of dying from a brain tumor.⁽⁶⁾
• ^{The glioma family of tumor accounts for 44.4% of all brain tumors.}

This information was taken from the Brain Tumor Society website.

For more information visit any of the following sites:

American Brain Tumor Association
Brain Tumor Society

Grey is the symbol for brain tumors. To show ultimate support, make yourself a grey ribbon to wear this week. I will have mine. :)

I Hurt Where Long Forgotten

Well, I'm on day two past the parent/child soccer game and I still hurt in places I have long forgotten. I like to believe I stay active and I'm not in horrible shape by any stretch of the word but playing 1.5 hours of soccer kicked my behind.

I think I said in the last post that I intended to "throw" the game. Well, we get there and the coach indicates that he wants to make the kids try to learn teamwork. Therefore, he wanted us to actually play so that the only way they could win was to work together as a team and not do the "swarming" that they tend to do. Well, we were outnumbered at least 2 kids to each adult and we ended up winning 10-0. Ten goals when you are trying to show them proper teamwork is not a quiet affair. In the end, we had a great time and I think everyone enjoyed themselves.

After the fact... I haven't used most of the muscles that hurt in this way for at least 10 and probably more like 15 years. I loved pushing myself but man I am paying the price now. Anyway, wanted to give you an update on the game. *Huggles*