Saved Again by My Guardian

This was not the way I wanted to spend the just shy of 1 year anniversary of my surgery.

Some of you may have already heard about this but today, my guardian angel (aka my son) possibly saved my life (and his) again. This morning, while I was driving to work, I had a seizure for the first time ever. While having the seizure, it caused me to veer to the left side of the road. My son realized this was happening just as the front tire hit the concrete barrier on a bridge and was able to pull the wheel and get us back on the road. Had he not thought quickly and done this, we might have both been seriously hurt.

I managed to get the car to a parking lot and wait for John to get there. While waiting I had two more seizures. I was able to tell when they were going to come on because I got a sense of euphoria and my mouth would switch and attempt to smile even when there was no reason. This would last about 2 seconds before it would put me into a full complex partial seizure. My eyes would flutter and my eyes rolled up into the back of my head. My neck would also stiffen to the left. I never lost consciousness and I could hear everything that was said but I was unable to respond to anyone in any way.

After John got there, we headed to the ER per my neurologist's instructions. On the way there I had another seizure the same as the previous three. Luckily, the wait at the ER wasn't bad at all and I was seen almost immediately. I had another seizure while the doctor was in talking with me. He was able to get a solid diagnosis of complex partial seizure. After talking to my neurologist, I received a shot of Ativan which is a quick acting drug that will stop all seizures but it only lasts a short while. I was also started on the Keppra (500 mg) drug, which I will take twice a day for probably the rest of my life.

After I was released from the hospital, I had to go to the clinic to have an EEG done. An EEG tests your brain waves and monitors to see if anything is misfiring and causing the seizures. I will not know the results of this test until I see my Neurologist next Tuesday.

I have not had a seizure since 8:30AM when I had it with the doctor. With any luck I will not have any more and we can start the long process of monitoring. I will not be able to drive for 6 months after it is proven that the seizures are under control.

The Neurologist and the ER doctor both believe they were caused from scar tissue that is resultant from surgery and radiation. We were told even before I had surgery that I was a risk for seizures and they told me multiple times that radiation can cause side-effects for up to 10 years. I am sure that my neurologist will order an MRI when I see him but for now we are all pretty certain it's scar tissue from radiation.

I wanted to make sure and update everyone. I will keep you all posted on what is going on. For now, all is well but this week will be a big test.

Huggles,

-- Amy

One Down Twenty-Nine To Go

Radiation treatment number one has now finished. For the most part, it went just as I expected and there were no apparent problems. Now we'll see how the next 29 go.

The Optic Nerve will be spared and should only receive half of the radiation it can safely handle. This is good news.

So far, there have been no apparent side effects other than a slight taste of metal in my mouth. This is a common phenomenon apparently and it's just more annoying than anything.

As for the unexpected part of the treatment, instead of just receiving radiation from the front and right of the tumor, I am receiving it from both sides and the front. Not a big deal other than this means when the "sunburn" side effect takes place, it will be a much bigger area and thus more of a headache. I was dreading that side effect as it is so now I am seriously dreading it. UGH

Anyway, that's my update.

I'm Taking the Standard Path

Ok, so this is a rare type of thing for me but I've decided, after much deliberation, to take the standard path and do radiation for my tumor. It really came down to me being against the doctors and just about everyone else I talked to so I decided that this time I need to not let it drag out the 10 months I let it go with surgery. There's pros and cons to radiation but in the long run I have to believe that the pros outweigh the cons. Whether it does or not remains to be seen but in the world of cancer you have to make your decision and believe it is the right one at all costs. There is no right and wrong answer with brain cancer because truthfully, there is not cure. You just have to manage the tumor the best of you ability and put your trust in God for he is the only one that can cure it.

The main issues with radiation in the brain is that it can only be done once in a lifetime. This is the one thing that scares me the most. My tumor is still on the slow side and, unfortunately, gliomas tend to transform to higher grades as well as return. So I am playing the one time card on what could be a non-issue for a while. If my tumor does transform it will become the most deadliest type of tumor GBM (You've heard this mentioned with senator Kennedy). If it makes this transition, I have already played what is first mode of defense against it. However, I guess I have to believe that in the time it will take mine to transform, there will be new technology out there and possibly even a cure. Something the doctor said to me made a lot of sense and part of my decision came from the words. "With an Astrocytoma, even a grade two acts like cancer and invades the brain. Radiation is an option with it. With a grade three, it's really not even an option it's a necessity because if you wait, it could be too late."

Anyway, they are supposed to call me in the next two weeks and we will get started. I will attend sessions daily monday through friday for six weeks. Side effects tend to generally start in weeks 2-4 and can range from nausea, fatigue, hair loss, effects like a sunburn, headache, to minor mental disturbances. These can last for up to 4-8 weeks following the end of radiation.
The biggest complaint and the only one not usually able to be "treated" is fatigue. The other major high risk we run is that my tumor is near the optic nerve. I don't pretend to completely understand this but I will explain it to the best of my ability. The brain can handle 6000 rads of radiation before the good brain cells are unable to recover. The optic nerve can hand 5400 rads. Of course, we want to use as many rads as possible to destroy the tumor cells. However, we will have to not use the full so we don't damage my optic nerve. He hasn't presented me with the full plan on doing this yet but he is going to simulate it to see if we can come from a different angle and avoid it more or just how much the optic nerve will actually receive. I'll know more next time we talk. As I told him, that's one deficit I'm not sure I'm willing to take the chance on right now at my age. Therefore, I guess there's still a chance radiation will become something to tuck away but for now you all are aware of the plan.

Not Just Any Brain Tumor

Well, we saw the doctor for the first time since surgery yesterday. It was quite a day to say the least. This will be in no particular order and may seem a bit jumbled because there is a lot to get out and I haven't fully wrapped my own brain around it yet so... well, just bare with me.

1. The doctor says I look great and everything seems to be healing well. He was pleased with how things look.
2. I still don't know when I will be returning to work (gotta speak with the manager of my short term disability claim sometime today before I will know.). However, I have been cleared to drive. YAY!!! John and I will be going out a few times over the next few days until I get the hang of it again and make sure I feel strong enough.
3. I can resume light duty activities as long as I listen to my body. This means I can maybe start light weights and lift things a little like I've been doing. *Shush don't tell*
4. Ok, I'll cut to the chase. My tumor pathology also came back. It is an Anaplastic Astrocytoma glioma. This means it is a full blown grade three tumor that has infiltrated into my brain and reproduces at a rate higher than any low grade glioma. This means it is a malignant tumor. (aka brain cancer) Luckily, my tumor is only reproducing at 6% on a scale that goes to 100% so it is still reproducing very slowly, which is very good.
5. They are suggesting radiation to follow to take care of the tumor that remains. I speak with a radiation onocologist here locally next tuesday to discuss this treatment and so John and I can make the decision if we really want to do this. In the brain, radiation can cause either short or long term problems with functions including memory, intellect, and other high function areas of the brain. It can also cause severe fatigue, nausea, etc, during and after treatment. This is a lot to consider since I am sitting here with absolutely no problems.

Ok, I think I summed it all up pretty well. There's a lot more but I really don't have it all sorted in my head enough yet to discuss it. I will type more as I know more.

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

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.

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.

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!

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. :)

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!!!

The Cat is Out Now

I finally let the cat out of the bag and my family knows now so... I'm just full of new things this past week. This one is the big one though. Tentatively, I will be having an open biopsy/total resection on my tumor on June 10th.

John and I have been thinking long and hard about this decision for several months now and we finally made the decision that it is in our family's best interest to do it in June. I'm sure those that have watched my blog from day one is asking why I've had the sudden change of opinion. Well I'll do my best to explain.

1. I reserved the right in the very beginning to change my mind as I saw fit.
2. In December, they changed the coil in the MRI machine (some of you may remember me writing about this). This caused my December MRI to show change, whether or not I felt it was verifiable. My MRIs have been clean since so I'm holding on to the hope that it did not change in December but the stress it put on John and I over the next two months was brutal. The thought that it could grow verifiable over a time that would be hard on our family (harvest, son in school, holidays)... this made me think it's best to do it on our terms. So I guess you could say I've decided to get the tumor before it gets me.
3. By doing this in June, my son is out of school for the summer so I don't have to worry about him being four hours away in school worrying about me. Also, this way, he can be my "supervisor" when I do return home and John doesn't have to worry about finding people to stay home with me in the event something should go wacky.
4. By doing this in June, we are successfully between planting and harvest seasons so John can take the time he needs to be with me in Chicago as well as take me to appointments as needed.
5. It was not a sudden change of opinion. I may be telling everyone about it now... less than 10 weeks to surgery but John and I made the decision back in January. We've had plenty of time to think about it and work out what details can.
6. I've got one of the best doctors in the field working on me. I trust the man that will do my surgery with my life. I'm young. I'm healthy. I have no deficits. I have hundreds of people behind me supporting and praying for me. I can't imagine that the time will ever be more right than it is right now.

I made this decision no differently than I have every other decision I've made in my life. I thought long and hard about what all the possible options meant. I mentally worked out the details of the pros and cons. I spent many nights working everything over in my head until I knew what I felt was the right move. Don't get me wrong, I changed my mind 100 times before I got to where I am now. It's not a decision you just make on the fly like what you are going to have for lunch. I knew the decision would come when I was ready. When I had it all worked out, the right decision would be sitting in front of me. That is where I am now. I have worked it out. I have decided this is the best way. I have focused on the goal. I have stepped into the ring to take the "bull by the horns". I have worked out the possible scenarios in my head. I have prepared the things I feel I need. I am ready to fight this thing.

I am doing well. I am focused. I am set. I am ready.

Spoiler Alert... Read First paragraph

Yes, you read that right. This has a spoiler alert attached. I know how some people would rather read the whole story and live the terror before knowing the outcome so this is your chance. If you want to live it... go back and read the posts that have the label Nightmare2. You might have to give it a bit because I have a lot of posts to proofread and publish but it is the only way you can really live it. (Remember to read from the bottom up!!!) I will post a message out here when I finish all the back posts as well so you know that it's safe. Now, if you don't want the ending spoiled... Stop reading now.

You've
been
warned...

Read
No
Further
if
you
want
to
live
it.




Long story condensed.

I began having an issue with a neck injury I've had for a few years. I referred to it in a previous entry. However, now that I have a brain tumor my chiropractor was concerned it was masking something occurring in my head. Thus he refused to work on me until I had spoken with my NeuroSurgeon. The next day I went to the Emergency Room the pain was so bad. (Never did see a doctor but that's another story entirely.) In the end, they called for a head/neck MRI. The head looked good but they found what they believed was a tumor in my C3 vertebra. The beginning of nightmare two. In the end, after a bone scan, it was determined that it was merely a hemangioma or a birthmark that had formed in my vertebra. Nothing to be seriously concerned with. We'll watch it. I have bigger fish to fry. Story ends.

Obviously it wasn't that laid back as we went through it but the story ended with a happy ending and that's the most important thing. Who knew a birthmark could terrify you? Now if you want you can read the story now that you know the outcome. *Huggles*

Doctor Amy Was Right On

I received the call from my doctor today. As I predicted, my MRI showed that my tumor is stable so I can breathe a sigh of relief for another 8 weeks. Actually, I'm breathing an even bigger sigh of relief but I can't really go into details right now. I promise, I will fill you all in real soon. I've just got to have some conversations and then you all will know what I've been thinking about the past several weeks and the real reason I've been so quiet of late. In a few weeks some major decisions should be finalized and I can finally give some back story. Honestly, I have my reasons, you just have to believe me.

So anyway, the tumor remains stable and that means I can remain in my current mode. I will talk to you all later when I have more time to write.