Thursday, June 26, 2008

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*

Sunday, June 22, 2008

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,

Monday, June 16, 2008

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!!!")

Saturday, June 14, 2008

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

Friday, June 13, 2008

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.


Thursday, June 12, 2008

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

Wednesday, June 11, 2008

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

Tuesday, June 10, 2008

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*


Monday, June 9, 2008

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. :)




Sunday, June 8, 2008

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*

Thursday, June 5, 2008

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*