I Can't Buy a Break

I received a call from my GPs office. The head checks out good but there was a spot found in my C3 vertebra during the MRI. The radiologist wishes to see a bone scan. The bone scan is scheduled. I do the first thing I could think of to get an honest opinion, I request the report and seek out my chiropractor.

Upon reading the report, reality hit me like a freight train. It was pretty obvious what they felt was going on. They felt the spot was a Met (cancer tumor that relocates from somewhere else in the body) or at the least a tumor. I walked into the chiropractor's office in shock. How was this possible? He read the report and looked at the scan and talked to me about it. He didn't have to explain to me what a Met was or what it meant, instead what I needed to know is what else it could be. It is a good thing he took the road he did. There are many types of tumor it could be that are not cancerous. One that is quite likely based on the look of it is a hemangioma. A hemangioma isn't serious unless is starts causing problems. This was a thought I would hold on to in order to get me through the weekend to come. The other good news he shared was that the report states there is no damage to the vertebra itself. It is in prime health. This is good. It hasn't progressed to the point of hurting it or my spinal cord.

The bone scan would give us an idea of whether it is a tumor and if it's malignant. If it shows up in the bone scan, it is very likely a malignant tumor. This could mean any number of things. I'm trying not to get ahead of myself here.

So, my second nightmare begins as the waiting starts again.

I Am Still in Pain

It's Monday, I am still in quite a bit of pain from my neck but I have not had any more episodes since Wednesday. Even the "shots of pain" that is typical of my neck are fewer and further between. Therefore, with any luck, I was able to readjust my neck myself and will be ok in the end with or without an adjustment.

The MRI looks good to my eyes so I don't think anything has changed in my head. As for my neck, who knows. I know nothing about necks. Something bad could be staring me in the face and I wouldn't know it. I'm beginning to think I should pursue my medical degree when this is all over... (I'm kidding)

Hoping for Relief This Week

Well, we don't have anything official yet but first glance at the MRI shows that everything looks fine in my head. I know they are just being cautious and that's not necessarily a bad thing but I'm now working on day 9 of pain and I'm not to fond of caution right now. LOL Anyway, I'm looking forward to getting something official ASAP so that with any luck Monday I can get into my chiropractor. Ok, sorry this is short but I'm off for an ice pack now.

'Tis The IDES of March

Well, Happy IDES of March to everyone. I hope everyone has an interesting and safe day.

I think we plan on going out to dinner for my birthday today and who knows what from there. Oops, yes, it's my birthday today. No wonder everyone is scared of me... I was born on the IDES of March. :)

Anyway, have a good IDES and may you all have a better fate than my darling Julius. :D

It's Only Been Four Weeks

It has been four weeks since my last MRI but I'm not heading in for another. This time of the head and neck. My NeuroSurgeon believes this is the way to find out if it is anything to do with my head and to see if there might be more going on in my neck. It will answer a lot of questions and probably isn't a bad exercise. However, I'm not looking forward to another MRI.

So, the day before my birthday, I go in for another. It's not bad. They do the same thing as with your head but it takes a little longer. I think it added 30 minutes to the MRI.

The Week in Review 3-14-2008

This is probably a birthday week I won't soon forget. LOL

Medically - Oh where to start... I pretty much summed up a good part of my week in my entry yesterday. Needless to say it hasn't been a good week and I've had a lot of pain due to my neck. However, the MRI is scheduled for today and with any luck we'll get some results and maybe something to fix my neck. I'm not going to hold out hope on the adjustment today so that my neck isn't hurting but a girl can wish can't she?

Other than what I described, there hasn't been much else medically. I've written off a few things that occurred this week as "there was no action so no point in saying it" but other than that things have been par.

Emotionally - Other than being in A LOT of pain this week, I've been pretty stable in the emotional front. Nothing really to report here although I have been wrestling with my emotions on something that I'm considering just not sure when or how. (How's that for confusing? LOL)

Mentally - I've made good progress in a few different areas this week including the house, paperwork, and just plain mentally. I'll go into more details as I get into things in a few days.

Physically - I still have occasional sinus pressure but it is pretty much gone and put on a back burner with the pain in the neck I've been having. My pains are shooting from my upper back/neck area and into my head just like when I originally injured it. I'm guessing that I've got the nerve good and pinched by now. With any luck, I'll be pain minimal by the weekend but... like I said, I'm not holding out much hope on that.

Family - I had a good post earlier in the week about what went on over the weekend and for now I'm just going to leave the weekend at that. It was a good, fun weekend and I look forward to many more like them.

This week has been about normal when it comes to family. We talked to my son this weekend about some decisions we have made so we had to wade our way through that but for the most part he is handling it very well. He also got his report card this week so we had to have another long discussion on what we expect out of his grades. (No more detail here.)

The one point in the week that bothered me greatly was the one thing I knew would eventually come up. He told me that he felt this whole thing was his fault. (For those of you that don't remember it was a baseball he threw at me that hit me in the face that led to the MRI that found my tumor.) I was quick to tell him it wasn't and explain to him why but I'm not sure how much he believes it. It's not his fault... not now, not ever. Some things just happen and we don't always know why. Truth is, me getting hit with the ball could eventually save my life. We are watching my tumor now and we are prepared to treat it but had I not had that MRI... well, we'd be oblivious. I'm going to actually stop here with this line for now. I think it's got good material in it for later in the week if I get time to post a separate message. Anyway, just keep my son in your thoughts that he doesn't continue to blame himself and realizes that he could be my angel in disguise. :)

Play - Well, my son enjoyed bowling over the weekend and we had an overall fun time. This week has been a little lean on the play things but mostly because I've been hurting so bad. We were going to dance Thursday night and again on Saturday but needless to say I'm not feeling up to it. We'll see what the next week brings.

Well, that sums up my week. Honestly, I could have given a one word description and that would have been... Pain. Oh well. I will have my MRI in a few hours. We probably won't know anything immediately but maybe they will reassure themselves that it's in my neck and not my head and I can get some relief soon. So here's to hoping they see enough to agree to pain pills and an adjustment and we'll go from there. *Huggles*

How My Life Has Changed

Background first.

About two or three years ago, I had an accident that caused a whiplash type injury in my neck. I suffered from it for almost six months before I found a chiropractor that was eventually able to get control of it. After sorting it out, I continued to see him about every six weeks to make sure things stayed where they should. For the most part they did but occasionally I'd have a problem and would have to see him sooner.

Well, after being diagnosed with my brain tumor, he has been much more cautious about when and how he gives me treatment. I guess this isn't really an issue because I appreciate him being cautious but sometimes I am just certain it is my neck and nothing else.

This brings us to the last week. I was carrying around a lot of computers the last few weeks for work. These are full-size computers complete with about 40 pound weight. Well, as I should have known, tossing them around like a rag doll tossed my neck/back out of whack. By the time it was bad enough for me to contact him, they were closed for the weekend so I had to wait until Monday.

I had a few stabbing pains with it over the weekend but nothing unusual for my neck when it is having problems. However, because he was concerned that it could be pressure related instead of nerve, he didn't give me the typical adjustment. Instead, he asked me to email my NeuroSurgeon to see what he thought. Well, I had delayed but on Tuesday I decided I had better when the feel of my pain increased. These new pains continued for several hours. On Wednesday, I saw my GP and he agreed it was probably neck related and on a typical patient they would prescribe pain meds and an adjustment and send them on their way. Oh, but wait, I'm not the typical patient. Instead of just getting the treatment and moving on, I have to have a head/neck MRI... to be safe.

So, I guess on Friday I will go in to have another MRI. My last MRI was a mere 4 weeks ago. It's pretty sad when you can almost call an MRI machine your second home. LOL

Anyway, I don't believe it's anything to get worried about but here is what I now have to deal with since the world now knows I have a brain tumor. *Huggles*

Waiting in the Emergency Room

I actually had posted bits and pieces of what happened over the next few days but this will give actual information.

My chiropractor refused to work on me Monday. He was concerned with my neurological exam and was afraid I was using my neck to mask my head. I know that my neurological exam was caused from my trigeminal and the fact it had really bothered my right eye over the weekend. This happens on occasion. My right eye will get so dry from the nerve issues that it starts acting funny. I always know it's going to happen and this was no different. Regardless, it meant that I didn't get my neck adjusted and I continued to have episodes with it.

Tuesday, while at work and working on my computer, the pain shot up just as it has in the past but rather than hurt between my shoulder blades and head, it seemed to radiate from the center of my head. It was very consistent almost like the beating of your heart. I also had the blurry vision during this time and could hear my heartbeat with each throb. It lasted approximately 5 minutes but that could have been longer. The pain intensity was in the 8 range. I took two ibuprophen and it seemed to dull it and after a few minutes it went away although I feel a bit "stiff" since. My neck and shoulders feel very stiff since and this time it was not preceded by neck creaking. I sent an email to my NeuroSurgeon at this point with details of what was going on.

I would have this twice more before leaving work to go home. They were not as intense as the original one but they stopped me in my tracks nonetheless. At this point, they seemed to be triggered when I walked. Of the other two, one occurred when I came out of my boss's office after telling him I was going to go home early and the other when I walked out of the building to get into my car. I didn't have a single spell while in my car but would have another when I walked into the house. All of the times I was walking.

When I got home, I went straight to my bed and laid down. I didn't dare move hoping that I wouldn't have it any more. I called John before I left work to let him know I was driving home. I had been laying there for about 20 minutes with nothing when my cell phone rang. By the time I was able to find it, I had triggered yet another episode of pain. This one would be one of a rating 6 or 7. I hurt so bad that I screamed into my pillow willing the pain to go away. I laid there for almost an hour waiting for the boys to get home. I was feeling so good, I decided to give one more try at getting out of bed. This was a huge mistake. This one quickly shot up to a nine and lasted anywhere from five to ten minutes. I was in tears when I heard the door open and knew the boys were home. I hurt. I hurt bad.

John came and checked on me and I tried not to move but at one point I decided I had to try. I got out of bed with his help and successfully walked to the Great Room. Before I reached the couch, it hit again and this time I told John that it was time to go to the Emergency Room. I wasn't sure how many more of these episodes I could handle. Anyone that knows me, knows that it took A LOT of pain for me to say I needed the ER. I am not an ER person and I'm not a hospital person so I was in tons of pain to tell him I needed to go.

We dropped my son off at a friends house. (Love ya, Jessi, you are a life saver) I knew he'd have more fun there than waiting in an ER and I didn't want him exposed to the flu or anything going around either. At her house, I had yet another. I held on tight to John to steady myself and I felt my back and neck tense a lot during this one. I also became much more disoriented this time than I had been. Apparently I was able to "move" something this time because luckily it was the last episode I would have.

After waiting in the ER for over 3 hours, John went to see how much longer it would be. They told us there was still 8 ahead of us and due to the emergencies that were on their way in, that would be approximately 3 more hours. I was not interested in spending another three plus hours at the hospital so I checked myself out. (Note: this was 3 hours and I wasn't even out of the waiting room!!!)

At this point, I won't deny that I am terrified this might be from the tumor but I am refusing to think that way right now. We'll see how the rest goes.

Thinking of Kathy's Sister Today

Today I have been thinking a lot about Kathy's sister and the surgery that she is undergoing today. I know that this surgery is also in my future so I am very interested to see how things go and I wish to see the power of prayer do it's work again. Kathy, your sister will be in my thoughts today and if you get some time, I'd love to know how everything works out. *Huggles*

Keeping my Mind Very Busy

I love to keep my mind busy in various ways. Sometimes it is just playing a particularly challenging game, other times it is just organizing it into ways that complicate most. LOL However, as long as I am able to challenge my mind, I know it is still in one piece even if my brain isn't necessarily. (Ok, bad joke)

Anyway, on Friday my son had a music contest that he participated in. He did very well. He played a baritone solo and did a vocal as well. He's got a much better voice that I do that's for sure!!! Anyway, he received firsts in both solos so I am very proud of him. John and I were working the doors at two of the contest rooms so we got to hear quite a few of the students. Some of them really do have a lot of talent and for the most part we had a good time.

Then on Saturday we had a square dancing convention meeting. Again it was very productive. John and I have never had the privilege of attending a convention so it has been rather difficult being part of the committee on this one. However, we are learning a lot and I look forward to July when we actually have it.

Finally, on Sunday we had a bowling birthday party for my son. He turned 11 in February and we finally got around to the party. Since his birthday is so close to Valentine's Day, it has always been difficult to have a party for him and have his friends actually attend. He had 11 of his classmates there on Sunday so they had a blast. We also had the opportunity to talk with some of the parents that I didn't really know so that was also a plus. Sometimes you don't realize what type of event will bring someone to you that will make a difference. I suspect one of those parents will be that difference. We'll see as time moves along.

Beyond that, I am doing what I can to complete things I need to and get things in order. *Huggles to all*

A Weekend with Neck Pain

We had a very busy weekend and I wish I were feeling better during it. As you all know, I had a recurrence of my neck pain over the week and this weekend therefore was not pretty.

I had several strange symptoms pop up as the weekend progressed. I would get a shooting pain that started somewhere between my shoulder blades and would shoot up to the back of my head. They would last for a few minutes, I'd be disoriented while they occurred and I would "hear" my heart beat in both ears. I never thought anything of this because it would always be immediately preceded with a "creaking" in my neck and the movement of my right arm. These are all signs of something in my neck pinching a nerve. (I've gotten these or similar symptoms before.)

I'm definitely paying the price for not calling my chiropractor sooner in the week. UGH

It all began with whiplash

A few years ago, I suffered a minor neck injury due to a whiplash type accident. I suffered with it for almost six months before I found my chiropractor and he "cured" it in just a few weeks. However, I frequently have to be cautious with what I do because the area will probably never fully heal again. Just like anything in the spine, once you mess it up, it can go back any time.

Anyway, now that the background is complete, I did some of those bad things this week. I was carrying some computers that are on the heavy side and I carried A LOT of them this week. Needless to say, I probably did too much. At some point in the week, I felt a pop and knew I'd done a bad thing. By then it was to late to get into the chiropractor so I would have to suffer the weekend with it. Some day I will learn to get in before I start having the pains when I know that I've done a bad thing. *Sigh*

The Week in Review 3-7-2008

Medically - I remain in the calm between MRIs. It's a good place to be. There are some things out there hanging such a few bills the insurance billed incorrectly and things like that but for another few weeks it will be relatively quiet. We'll see how it looks in the next week or so.

Emotionally - This was a pretty good week overall. I've had more energy this week than I've had in a long time and I think most of it is because of the changes in my current cold pattern. The little bit of sunshine we had over the weekend helped A LOT. So I guess on the roller coaster we call a brain tumor, I am on a flat track.

Mentally - I made some good progress on the house this week and setting up a plan of action for the things that still need to be done. We'll see how well it turns out. I tend to be a list person but nothing ever gets checked off. LOL

Physically - Well, as I stated in an earlier entry, my sinus has cleared up. However, it was enough to set my hay fever into action. I have had a sore throat from drainage most of the week and my nose is definitely running a bit. *knock on wood* No signs of the sinus infection trying to return. However, my bronchitis was aggravated on Thursday because someone at work decided to ignore the no smoking ban and had been smoking in the lady's restroom. Last night was horrible and I had to return to my inhaler. I truly believe the state wide ban on smoking has kept me from getting bronchitis worse this year. Hopefully it just aggravates me this time and doesn't force it into bronchitis again.

Otherwise, my energy level has been up and I've made some good progress on some physical things around the house that needs done. This is very good. I also was able to walk on Wednesday night. My plan for now is to just walk every other night since the treadmill is harder on my knees than walking outside. As soon as the weather improves enough to walk outside, I'll be there and probably walking nightly. When I walked, I also did some dumbbell weight work for my arms. It's not much and it's weak from where I've been in the past but anything at this point is better than nothing. Anyway, it feels good to be working out physically again. I usually am able to get back to better weight when I do it consistently so we'll see where I get. We all know it can't hurt. :)

Family - The end of the nine weeks at my son's school is today so we should get his report card next week. We'll see if he truly is doing better now. I know behavior wise he seems to have finally settled in and made an improvement. We'll see what the teachers say.

Last weekend was busy. We had a 4H Grandparent's dinner on Saturday that ended up turning out really nice. The slide show I was working on was for that and it seemed to be a big hit. Maybe next time we'll have enough time that I can actually show them all how to do it. (Maybe that's an activity idea.) After that was all over we had a dance that evening. It was fun getting out there but my chest was still tight enough I was only able to do every other one. This is so unlike how I am when I'm feeling good. Anyway, hopefully our next dance has a better turnout and we can have some more variety. Sunday was actually quiet and we enjoyed the weather and worked around the house.

This will be another busy weekend. My son has a band contest tonight, we have a meeting tomorrow for square dance, and Sunday is his bowling party. I'm sure there will be more in there too. I guess this is really just a head-up that I will be quiet as usual on the weekend. LOL

Play - We had some fun family tickle wars over the weekend, watched a movie, watched lots more CSI, and played our usual online games. I nearly gave up part of my Tribal Wars villages because things were just getting to be to nuts but a friend and leader on it talked me out of it. *Thanks Kotsiras* I think I made the right decision to stay after he assured me that what I was doing was ok. I really have made some friends on there and I never expected to. Tribal Wars is not a game where you interact in real time easily with other players. Yes you have tribes but it's just not the same as a game such as Puzzle Pirates where it is real time conversation. Since I don't chat well in forums (just don't tell Plano that) I never thought I'd make friends but surprisingly I've made quite a few and I enjoy the game. What more can you ask for?

Speaking of Plano, I need to share something with you that I did on Friday. It's strange that an online community can make you cry but over the past six months many online communities have done just that. The overwhelming support I've received from my online friends is just amazing. Heck my eyes are watering just typing this. Anyway, Plano is a Harry Potter site that is based as a community that is at Hogwarts. It's really cool and I've made a lot of friends there. We had our big awards ceremony from the Fall term. (See you actually take classes and everything just as if you were at Hogwarts.) Well, there are also awards given for things such as the Friendliest, Most Random, One who spends the most time there, best student, etc. I was extremely honored to be the recipient of four of the awards given Friday night. All four of these awards are given from your peers and I was deeply touched. I wasn't surprised at a couple of them because many of our loyal members have been absent for personal reasons but there was one that truly touched me to the soul. I received the Golden Wand Award that is given to the student that has done the most service for the school. It's one of the highest awards a student can receive. It truly touched me that those at Plano felt this way about me. I really do enjoy the community there and I do my best to spend time and spread the word but to actually win it... it was priceless. For those interested the other awards was the Friendliest, most helpful, and Home away from home (most active). Thanks everyone that voted for me. *teary eyed huggles*

For those interested in any of the games I've mentioned in my blog today, you can find them all as follows:

Plano Hogwarts: www.planohogwarts.com or Plano Hogwarts Forums I can be found under the hand DreamCatcher and I'm in the Hufflepuff house where I am Prefect. If you decide to check it out and join, be sure to tell the sorting hat that DreamCatcher sent you. :)

Puzzle Pirates: Puzzle Pirates I can be found on the Cobalt Ocean and my pirates are DreamCatcher, Starrgazer, and Midnitesky. Information can be found on the very bottom of my blog as well.

Tribal Wars: Tribal Wars I can be found on tribal wars as Dreamcatcher79 and I am on Worlds 10, 12, and 13

Ok, enough of my plugging. Huggles to all.

The Good With the Bad

Ok, let's see. The good news is that we had beautiful weather over the weekend that reached 60+. The bad news is that today it is below freezing and we are expecting 3-7" of snow. The good news is that the good weather over the weekend allowed my body to knock out the bronchitis and sinus that has been plaguing me since Christmas. The bad news is now I have a sore throat, ear ache, itchy watery eyes, and runny nose that I lovingly call Hay Fever thanks to that nice little taste of spring. LOL

I guess I can't win for losing right now. At least the Hay Fever doesn't wipe me out like the sinus and bronchitis does. I have a nice little inhaler that keeps it at bay and if I'm lucky it will keep things sane for a while. Now I can just hope this "return to winter" doesn't send my sinus back into a flurry.

Beyond that, things are going pretty good. It's been busy in our house but things could be worse. :)

The Week in Review 2-29-2008

Medically - Nothing new on the medical front. We've entered the calm between MRIs so unless I have a doctor's appointment for something else, it should be a quiet few weeks. YEAH!!!!!

Emotionally - I won't deny that this has been a tough week emotionally. I'm not going to go into details here because I wrote a whole entry on it yesterday. :) I'm hoping the weekend is what I need to recoup my mind and hopefully come to terms with the remainder of what is bothering me. I'll have a good report next week... I hope.

Mentally - I can't honestly say that any forward progress was made this week. The best progress was in some conversations John and I had and I am not more confident he is actually grasping things. He's a kid at heart and would sometimes rather deny something is wrong than to face it but I now know we are on the right track.

Physically - The sinus pressure has returned AGAIN and I'm still fighting the shortness of breath from the bronchitis but otherwise I'm doing ok physically. I am hoping to do some walking tonight to try to finally get the workout going again. I hope to report that I did my walking all week when I give my update next week.

Family - We have a lot of activities planned for the weekend but I plan on having some family time as well. We'll see how it all works out. My son has been doing well lately and I think he deserves something fun. We have scheduled his bowling birthday party for the 9th so that should be fun and something for him to look forward to.

Play - John and I have been watching a lot of CSI lately. I've always liked the show and didn't realize how much of the Las Vegas series I had missed. I just like that one the best. I like the characters and the dynamic they bring to the table. Ok, I admit it... I think Grissom is awesome!!! (and not just by looks *wink*)

We have a busy weekend with a 4H thing and square dancing so I won't be around here much.

Talk to you all soon. *Huggles*

Surviving by the Minute Week

I will not deny that this has been a rough week so far emotionally and for no reason other than I'm just trying to stay above the water. I think it is a combination of the weather, the continued fight with this sinus pressure/bronchitis, a lack of motivation, and reality that has me here.

I am sure the weather has been a huge instigator. I hate not being able to step outside if I want. The cold air aggravates my bronchitis so doing so is not a good thing for me. Even if I did go outside, what's there to see? Yes the snow is beautiful... the day it falls but then it quickly becomes nasty and slushy. Heck this last snow we had never did get that beautiful look because the ground was so wet it went instantly to slush. I am ready to see the flowers bloom and the trees come back. I am ready to sit out on the front porch to write my blog again. Soon enough I hope. We are supposed to be in the upper 40s to lower 50s this weekend. I just hope it stays there and doesn't end up in the teens again next week.

My sinus/bronchitis issues continue. I've been fighting them in one degree or another since before Christmas. Bronchitis really sucks when you get it ongoing and yearly. My son and I have both been down with it most of winter and only spring will end it for us. Come on Spring!!!

The lack of motivation comes as no surprise. The timing is definitely normal and with feeling cruddy from the sinus it is pretty much expected. Otherwise, a ton of things are probably not helping the issue any when you look at everything going on in my life right now. I'm hoping to nip this in the backside again real soon.

Reality is probably weighing on me as much or more than anything else. The reality has always been there it just sometimes is a little stronger. Every now and then I get into swings where I start down a new avenue of thought and this just happens to be one of those times. The avenue isn't always a bad one to explore. I would have never discovered Gamma Knife if I hadn't explored its avenue but sometimes it is tough to read what is before you and realize that it all applies to you. So what has been my latest avenue? Something I probably should have explored long ago... How to cope with the changes that are likely to be caused over time with my tumor. Don't read this wrong. I don't feel there is any need for this at this very minute but at the same time the reality is that I have something in my head that can be as large as 6 cm and it's not causing me any problems yet. When is it going to start? It could start years from now, months from now, weeks from now, or tomorrow. I am one that likes to be prepared. Thus why this is something I NEED to do NOW. When I am done doing my research, all will be well and I'll continue to not think about it. In the meantime, I just need to deal with my current reality and continue to take steps forward.

I won't lie and say that is the only reality currently affecting me. There are others, based off decisions I have made, that are also sinking in right now. Recent events have just brought them to light.

Ok, this is sounding more depressing than I really am so it's time to end this download. *Huggles*

A Post Back to Kathy :)

I could post this as a reply in my comments but I haven't had a whole lot to write lately and this way I am hoping she will see it.

Kathy,

Thank you for your comment on my earlier post. I am glad you found me in your searches. It is knowledge and awareness that is one of my prime reasons for writing this blog. I know the 38lemon site that is listed on the right hand side of my page has been a huge help to me and I hope mine will do the same for others.

I am very sorry to hear that your sister has joined the club no one wants to be a part of. However, I have learned that although it is a scary diagnosis, there are many people living good lives even in the wake of such a diagnosis. I have learned throughout the last six months that there is a fear associated with the words brain tumor. It is something that can instantly bring others to a gasp and, unfortunately, the first thing most think about is the worst. This is not always the case and it is a fightable disease.

Your sister and your family will be in my prayers that surgery goes well on the 11th and she makes a speedy and full recovery. I have seen many come through surgery and be back to themselves in a short time. I am going to pass along some resources to you and your sister if she is interested.

First is a yahoo group that is a fabulous source of information and support:
http://health.groups.yahoo.com/group/gliomasupport/

Second is the site I mentioned earlier. David has been through a lot and his website has been a source of information for me.
http://www.38lemon.com/index.php

Third is my direct email. I have not put my actual email here but I think you can figure it out easily enough. (my name)79a@gmail.com Feel free to email me and we can talk more detailed about things instead of typing out here. As you can see, I am pretty open about talking what is going on in my life. Trust me when I say talking about things is a huge relief.

I hope the doctors are correct and your sister's tumor is a low-grade glioma. From my understanding, it's not a bad tumor to have. Did your sister have problems that led to the diagnosis? How large do they believe it is? Is she holding up well... I know I know... considering?

I look forward to talking to you more here or by email.

Your family is in my prayers.

Amy

The Week in Review 2-22-2008

Another mostly busy week.

Medically - On Wednesday I received the official results that my tumor remains stable. This was overwhelmingly wonderful news since the last MRI had a big question mark over it because of the change in the coil. I didn't write about this previously but I also had a bunch of interesting conversations since my last MRI and I feel I have a better handling on what is truly going on up there. I won't go into details but I will share another photo of my MRI.



















It is my understanding that these photos actually make more sense than the darker images. I am not a doctor so I don't really know but I know these lighter pics do show more the scope of what we are dealing with.

Anyway, Wednesday I also took another visual recognition test. It is my understanding the scores were not high but until it's been officially graded, we don't have anything for sure.

My bronchitis continues, I've had a runny nose most of the last two days, and I felt crappy enough on Tuesday to go home early but other than that I'm feeling pretty good physically. I've had some sneezing again today so I'm guessing we had just enough warm weather to spark my allergies and now that it's cold again I'm hauling downhill very quickly. I will get to rest most of the weekend so hopefully by next week I've got this thing beat. If not, I will try to get into my doctor Monday or Tuesday.

Emotionally - This was a rough week emotionally although I feel like I kept it together quite well. It was tough waiting to get the official results of the MRI since waiting at this stage felt like I was putting life on hold. There was just to many ranges of unknown for this MRI. However, I got the news I wanted and it truly felt like a 50 pound weight was lifted off my shoulders. I feel lighter than air now and it is carrying me through the end of the week. John and I will be celebrating this weekend that is for sure. I need this weekend and probably the next couple of weeks to rebuild myself emotionally and then I'll be ready for the next big step in the World of My Brain Tumor. :)

Mentally - I didn't do a lot of physical things with preparing this week but I did make a lot of progress mentally. I have resolved myself to what has to been done and I know how to get there. I am more mentally into this game now than I have ever been and I don't plan on backing down from where I stand.

Physically - Since I am now off of the antibiotics, my trigeminal has gotten back to its typical "Am I really still having problems with it?" feeling. It is still there. I know it is since I still have a very dry right eye but I am so used to it at times it takes something crazy to make me remember it. (Like eating and not realizing that you have food trailing down your face. LOL)

I did not get back to working out this week like I intended. I felt good enough physically that I used what time I felt good to work on my house. My house has fallen apart since I came down with the bronchitis and it needs A LOT of work so I've put my energy in there. I guess that's better than sitting on the couch watching tv.

Family - The boys are both doing well. John is gearing up for the planting season since it is honestly just around the corner. My son is doing well with his school work for the first time all year and he seems to be growing up a bit. I hope he's finally getting there. I need to make some arrangements for a late birthday party for him. He wants to go bowling. With his birthday falling around valentines day, we decided to wait a few weeks to have his party. Now I guess I need to get moving and set a date.

Play - I've been spending most of my free time this week working on a slide show for my son's 4H group. We are having a big Grandparent's dinner and I volunteered to do a slide show with pictures of the kids, their projects, activities, etc. I have used PowerPoint several times in the past but this is the first one I've done with it strictly being aimed at a slide show. It's going ok so far, I just hope my lack of visual ability doesn't make it look bad. LOL

Test - I really don't want to say that I never even picked up a single one of my games all week so I will say No Comment instead.

So that was my week in a nutshell. I continue to look ahead to the future and be prepared for whatever life brings me. I know you have to play with the hand you are dealt and if you keep your heart about you, you might just surprise everyone including yourself.

Please keep the families of the teens that were killed last weekend in your thoughts and prayers. The next several weeks are going to be difficult for them as they try to reconstruct what caused the accident.

If you are in the MidWest (or anywhere getting poor weather this weekend) be careful driving!!!

Six Months Ago; Life Changed

The six month anniversary of finding my tumor will be tomorrow. In some ways it is hard to believe that half a year has passed since the day my life changed forever. In other ways it seems like it has gone on forever.

Certain moments will forever be etched in my memory. The look in my doctor's eyes when he said "You have a brain tumor"; The question of the unknown that would quickly appear in everyone's eyes when I told them; The days of waiting; The overwhelming relief I felt when the first neurosurgeon told me that it was a small tumor that would most likely not cause me any problems over the course of my life; The discovery of Gamma Knife and the "miracle cure" I believed it to be; The sudden heartbreak I felt when I was told that it is possibly not as small as we were originally led to believe; The feeling of being lifted up to the clouds by all of my friends when I was ready to walk away from the entire thing; The comfort I get from those closest to me; The look in my husband and son's eyes that remind me what I am fighting for.

Some things never leave you and one of those things for me is the amazing support I have gotten from EVERYONE. You truly don't know how many times I have been pulled from the brink of losing it by a simple word or a hug from an unexpected place. Just today I wrote a post on a message group that has a lot of very good friends that has become family to me. I'd like to share a portion of that message:

I often find it improperly placed when people tell me I am handling my situation with admirable strength. Deep inside, I know that is not the truth. Anyone with the kind of support that I have, would be able to do the exact same thing.

Every time that I feel like the fight is not worth it or the stress is too much, I come out here and read posts from my FlyFamily and I can feel my faith being refilled and my heart feeling positive again. Whenever I feel like breaking down into a blob and just crying my life away, I look down at my purple bracelet and think to myself that I can't let those that care about me down. My personal strength carried me through the first several days of diagnosis. It took me through to the point that I had actual answers instead of simply words, but after that time, it has been the strength that I draw from all of you that has kept me strong.

Without my many friends across r/l and the internet and the wonderful tool I lovingly call my blog, I probably wouldn't have the composure to sit here and type out this message. This wouldn't be a post that shows strength, love, and determination. Instead, it would show someone who feels defeated by life and willing to step aside and give up on it. Yes, I would have stayed strong for a while on my own, but by the time that I reached this point I would have crumbled. Instead, what you are able to see is someone that is determined to beat this thing and actually feels like she has reason to. Someone that feels like they have a reason to fight because there are people that would miss her if she didn't.

If this post sounds depressed, don't read it incorrectly because I am actually quite joyful today. It has been six months since I was diagnosed with something that most people find truly terrifying. It has been six months since they discovered the thing in my brain that sends chills down most people's spines. It has been six months since I rediscovered the meaning of life. It has been six months since I reached out for support and received it back in tenfold. It has been six months that I have reached inside myself for strength I didn't know I had. It has been six months that transformed me from a stubborn young lady to a mature individual with a will to live. It has been a scary six months. It has been the wildest roller coaster that I have ever ridden on. It has been six months that has defined who I am. It has been six months that will carve out the path to the rest of my life.

Ok, enough of this. Remember, leave no stone unturned. Leave no word unspoken. Live each day to the fullest of your ability. Give a smile to a stranger or a kind word to a friend. You never know when it will make the difference in their life. I love you all. *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.

The Week in Review 2-17-2008

Ok, so this one is late but I'm hoping it's worth the wait. It was a busy week so hopefully I don't forget anything of importance.

Medically - Where to begin, where to begin... I had my fourth MRI on Friday. At first glance everything looks good but I won't have the official results until Wednesday or thereabouts. I continue to pray that I am right and the MRI looks good. :)

On Tuesday I took a cognitive test and the results were interesting to say the least. It is our first "non-MRI" proof that there is definitely something wrong with the right side of my brain. The numbers are humbling. This is the first physical sign of any neurological deficits and it's strange because it still doesn't hamper me in life. This is probably because my mind has adjusted to this over the years and because it wasn't a sudden decrease in this ability, it was never noticed. It was never there so there was never a decrease. It will be interesting watching these numbers as my life progresses in the world of brain tumors.

My bronchitis continues. It was getting better for several days and now it seems to be going backwards again. I will give it another few days and if it doesn't start recovering again soon, then I will go back in for more meds. Yes I will wait if I can because I know the next step is the steroid Prednisone and I'm not anxious to go on that again. I am not a fan of it even if it does take care of the bronchitis. In the meantime, I continue using my inhalers and hope that it has plateaued and will go back down.

My sinus infection seems to have cleared up so that is a good sign. My tooth also appears to be healing quite nicely so that can be put to bed soon. It still has a small area that hasn't started healing over yet but as long as I keep food out of that area, it doesn't bother me. I can't wait until I can eat on that side again. :)

Emotionally - I won't deny that the week was an emotionally draining one. I haven't typically gotten nervous about the MRIs but with the big question marks from the last one, I won't deny this one had me worried. I came through it with the help of some great friends, however, and soon we'll have the official results of it and I can put it completely behind me for another 8 weeks.

Mentally - I made some good progress this week. I was able to get some more important documents sorted out and I have been able to reconstruct most of my list of things I still need to do. I have also laid out some plans for the future and written out what I am willing and not willing to do. Some of these plans will be in the near future, others are lifelong plans. I'll share them as time moves along. Right now there are still a few big question marks that need to be answered before I start sharing them.

Physically - I'm feeling much better than I did last week and my energy level has been back to a normal. I have always had very defined energy patterns and I'm just fortunate that my illness coincided with my natural low and now (even though I'm still fighting it) my natural high is stronger than my illness. I am hoping this high remains through the week and I can get things caught back up from being down.

I haven't been able to work out since early part of January. (It's hard to do cardio exercises when you are struggling to breathe because you are coughing with every other breath.) I am hoping to slide back in to at least my strength training exercises this week. We'll see if I'm able to manage or not.

Family - Everyone seems to be doing ok. My son is over his bronchitis/sinus infection and is back to his normal self. John seems to be avoiding the worst of sinus season so I'm hoping he gets through the rest. He's had a few flareups but nothing requiring a doctor.

We did have a scary event not far from our house Friday night. A truck with six teenagers in it was in a crash and four were killed when the truck exploded. The accident occurred about 2-3 miles from my house. I believe details are still coming out about the crash but it has been tragic for the community. Please keep their families in your thoughts.

Play - I'm tempted to take this section out because really there isn't a whole lot to write about here that isn't constantly repeating. Because of my bronchitis, we haven't been dancing because the activity is too much. I haven't even been on Puzzle Pirates more than a few times over the past several weeks and that was more to keep my employment labor alive than anything. Tribal Wars has probably taken the most of my time but... well I've got some decisions to make on that game. There will be more on that once I finalize them.

Test - Well, because of the long absence from playing, I will be hopefully starting this over this week. I need to come up with a workable plan so that I'm not taking hours a night trying to do this. I think I may separate it out into two of the testing a day so that it takes six days to get through all of the tests. That should help me keep it all down to 10-15 minutes yet still get in my practice and find good patterns. I'll work it out and report next week on it.

Anyway, it was a busy week and I'm glad it is over. We will see if this week is as busy or if it is back to a calm week.

Just a Quick Fill-in Today

It's late, it's been a busy week, and I'm tired so I'm going to make this a quick entry and I'll write the week in review tomorrow since it will take a while.

My MRI was today and it went well despite what might have been a slight reaction to the contrast. Nothing major just some minor breaking out. Anyway, I am not a doctor but side by side comparisons look like there is no change and this is a good thing. I won't have the official results for a few days but when I have then, you can bet you guys will be one of the first to know. We're hoping for no change and a continued nice and quiet tumor.

Well, I'm tired now so I'm going to bed. Talk to you all soon.

Friends Make All the Difference

As I am coming ever nearer to the six month diagnosis of the discovery of my brain tumor and I have caught myself looking back and thinking about all the many ways my life has changed because of it. Six months ago, John and I were still trying to conceive our second child, my biggest worry was how the Cubs would do, and everyday life almost felt like a nuisance. After August 22nd, all of that changed. Having a second child no longer became a priority but rather it felt like a burden, the Cubs season became a welcome distraction instead of something I truly cared about, and every single day became a gift that I cherished.

Beyond all of this, my diagnosis had some very positive things, none of which were more positive then the friendships that have developed and the warm feeling I get as I continue each step of this journey. This entry is for you... my friends.

Some give the listening ear when you just need to vent and whine, others give you that encouragement you need to make the next step, still others offer of their prayers with all of their heart. These are the people that support me through thick and thin in this journey and beyond. Without them, I'm not sure where I'd mentally be today.

Without further ado, I wish to make a special shout out to the following people:

Jessi - Now and forever my best friend
Jim - Much more than just a boss
Robyn - A new friend made since my diagnosis who has been a huge help to me when I am at work
Jennifer - A friend from online who has been there through much of this journey
Randy - More than just my therapist but a friend
Doctor Dewitt
Kate - My neighbor, walking partner, and friend
Katke - A friend from online who has been a huge supporter in this journey
John - My best friend, husband, and soul mate.

And everyone else who has supported, prayed, listened, and lifted me through out this process. Sometimes you really don't realize how many people's lives you touch until you truly need it and they show you how much you mean to them. I have been blessed with so many friends in my life and I value each and every one of you. I do not know where my journey will take me next but I know I will never be alone in it. May God bless you all.

Just Some Things to Ponder

Today I took the WAIS (Wechsler Adult Intelligence Scale) test of intelligence. It is a series of 14 tests that test your verbal and performance intelligence. Typically the verbal numbers would be indicative of the left side of your brain and the performance would be indicative of the right side of your brain. The results in this test didn't really surprise me but I find them very interesting.

In the verbal portion of the test I scored 124. This score is considered very superior and only 8 points from genius. (I will not get a big head from this number... LOL) However, in the performance portion (More based on visual cues) I had a test score of 93. There is a huge difference in the two numbers. I have always noticed that my visual acuity is not in line with my "intelligence" but I had not clue it was this much inferior. This isn't completely surprising since my tumor is on the right portion of my brain but it is an eye opener all the same. Who would have ever thought that my scores could be so significantly different? I know I wouldn't have believed it if I hadn't seen it with my own eyes.

So this test gives us a lot of interesting things to note and it will be interesting to see if these numbers change significantly over time. If they lower significantly, it would be showing the decline of my brain over time caused from my tumor.

Ok, for those that are interested, my comprehensive IQ ended up at 108 which is perfectly normal thank you very much. I will just continue to remember that my inability to judge distances, visualize concepts, and recall events is due to my tumor... oh and to stay in jobs that require brain performance not visual. :)

Fourth MRI has been scheduled

My fourth MRI will be done this Friday. It should go off without a hitch. I don't have much time to update as I'm ready for bed. Just wanted to post that it's set.

Huggles

The Week in Review 2-8-2008

I apologize for not making an entry last week for the review but we had lots of nasty weather and I don't have internet connection when the weather is nasty so... Here is the review of the last two weeks:

Medically - Well, the bronchitis is doing much better now although it is still there. I'd call it a 3 now instead of the 8 it was. The sinus infection also continues to linger but it is also not as bad. It is more of an annoyance now than anything and more so because of the next thing. On tuesday I had my tooth pulled. Do you know how hard it is to not mess up an empty tooth socket when you are coughing and have a runny nose? Quite the adventure I must say.

Otherwise, I got the results of my personality test that I took and surprise, surprise, I am even keel throughout and right down the center. I guess that explains why I get along with everyone. Anyway, there's some much more specific things listed as well but I won't go into details. I'm just happy to know where I currently stand since my tumor is in an area that affects the personality.

I think the paperwork is finally on its way to get my next MRI scheduled. I am hoping it is going to be some time the week of the 17th. I don't really want to blow my son's birthday or valentines day with it.

Emotionally - I'm as cool as a cucumber and everything is going well. Honestly, some days go by where I don't think about the thing growing in my head at all. Some days I do, but for the most part I don't think about it.

Mentally - I haven't really made any progress the last two weeks since I've felt so cruddy. I hope to get started again this weekend since I am feeling much better.

Physically - Well, the antibiotics I was on made my Gabapentin almost useless so I had some reversal on my trigeminal numbness and tingling. Not a big deal. I've gotten so used to it I barely realize it is there anymore.

I will say my former tooth area has been bothering me a bit because they put a couple stitches in and it irritates the heck out of my mouth. Not a big deal. There is worse things in the world.

Family - Other than my son struggling with his grades, everything has been pretty normal. We are all just relaxing and enjoying each other. I like this kind of excitement. :)

Play - Well, I've been to sick to dance so really we haven't done much in the play category.

Test - I've been sick enough I haven't even bothered to do my testing. I hate that but I have seriously not had the energy or will to do anything the past few weeks. I'm so glad I'm starting to feel better.

Well, that ended up shorter than some single weeks. There just isn't much info when you are sick and trying to keep life as low key as possible. Next week should start getting interesting again because we have a few fun things going on.

Rain, Snow, Sleet, Thunder, Lightening...

That pretty much sums up the last five days here in good 'ole Central Illinois. Thursday night/Friday morning we got somewhere around 11" of snow. By Sunday we were getting rain, sleet, thunder, and lightening. Yes we were getting the four all at once. We call it thunder ice. It's bizarre to look out across your yard at over a foot of piled snow thanks to the wind and then see a flicker of lightening, followed by thunder. Then the ice starts. Gotta love it!!! That's the beauty of Central Illinois... if you don't like the weather, just stick around for a few minutes and it will change. LOL

Anyway, yesterday and today the fog has been horrendous. It was really horrible yesterday. You couldn't see but a few feet in front of you. Today has been much better but still not pretty. Luckily, the thunderstorms and rain last night melted all the snow so driving isn't as hazardous today. Now we are supposed to get more thunderstorms tonight and snow. Should make for another interesting week and unfortunately my internet may be touch and go so if I'm not around... I promise I'll update on Friday even if I have to stay at work late to do it.

Well, take care all. I'm off to get ready to have a tooth pulled.

Just a Quick Heads Up

I just wanted to put a quick post out that I might not be able to update for the next few days. We have a snow storm moving in and if we get what we are supposed to... I won't have internet. I will update as soon as I have internet and/or something to say. LOL

Huggles

Welcome to Central Illinois Weather

I didn't get a chance to post this yesterday so I thought I'd take a few minutes to post it today. All I can sum it up with is that the midwest has the greatest variety of weather around. :)

Yesterday morning it was in the high thirties when I drove to work. At noon (as late as 2 according to the news) it was 63 degrees F outside. At two I check the weather center and there were thunder storms rolling in where I live and rain. Not long after this it began raining where I work. (I work over half and hour from where I live.) At 3:30, my mom called and told me I better consider driving home because it was already icy out and was only going to get worse. My car read 23 degrees at this point and we were getting sleet. By the time I got home, the town I work in was reporting snow. Last night it reached 9 degrees with 45 mile per hour winds making it feel well below zero.

How's that for some fun weather changes? It's no wonder I get sinus infections and the like as bad as I do. We will go four or five days that you need t-shirts and within 24 hours you need the long johns and heavy coats. Ahhh, the thrill of living in the Midwest!!!

Anyway, just had to tell you about our fabulous weather. Oh and we're supposed to get 4-8 inches of snow tomorrow night. :D

This Illness is Whipping Me

My latest illness is really whipping me this week. The sinus side of things is starting to come in pretty heavily and this is pretty unusual because normally my sinus infections turn into bronchitis not the other way around. However, they are simultaneous right now. Do you know how hard it is when you can't breathe out your nose and breathing out your mouth makes you cough? I wind myself doing anything besides laying in bed. It hasn't stopped me from being at work but I have to keep reminding myself to slow down.

My left ear has started bothering me as well so that must be the ear infection side of things. Luckily, in comparison, it is minor compared to everything else although it does ring when I get in a coughing spell. Actually, I think my tooth hurts me worse than my ear. Oh, an update on that, the dentist agreed and we will have it pulled next Tuesday. Now I just have to survive another week with it. I'm not looking forward to it but at least there is a light at the end of the tunnel.

I'm also still getting the low-grade fevers. If that keeps up through tomorrow, I will be calling the doctor back to see if I should be worried about it possibly turning pneumonia or if it is probably just from the ear infection.

Ok, I just wanted to check in since I hadn't in a few days. Now off to take the mountain of meds I'm on.

The Week in Review 1-26-2008

Sorry this is late getting out but I have been a bit under the weather this week with my ritual bronchitis attack and unfortunately hot baths have taken up my blog time. So here it is a day late.

Medically - Well, not sure where to start here. I guess I start with how I currently feel... one word... crappy. The bronchitis kicked in full swing this week, gradually getting worse as the week went on. I finally went to the doctor on Friday. The verdict is... bronchitis, sinus infection either ending or beginning, and the start of an inner ear infection. Oh boy, what a bunch of good news. So anyway, I'm now on an antibiotic, a steroid inhaler, and have been told to up my intake of my other inhalers. I feel like a walking medicine factory. The good news is that with my new toy (iPhone) I can set nice little alerts to remind me to take my meds. So far it is doing a very good job of it.

Also medically is the testing that I will be doing next week. I don't really have a lot of information on them but it is my understanding that I will get the results next week as well. I'm interested to see what all it says.

Beyond that, I am having to contact the insurance company AGAIN about my MRI. For some reason they keep putting it on 80/20 instead of 100%. There was something else but I'll be danged if I can remember what it was. I'm sure I'll think of it as soon as I post this.

(Actually, I just remembered.)

I've got a tooth that I believe I cracked the filling in.... I called my dentist on Tuesday to get in and they can't get me in until Monday. Talk about screwed up. Unfortunately, there are not many choices in dentists with my dental plan. UGH. Only a few more days and I'll be out of pain with any luck.

Emotionally - All is well. Nothing majorly new going on. Just taking things as they come and dealing with this nightmare bronchitis. I'm even on the verge of being moved back to seeing my therapist every two weeks instead of weekly. This is a good sign.

Mentally - No progress this week but took some steps backwards. I had to rebuild my laptop this week and guess what I forgot to save off of it? I lost my outlook .pst that had my list of everything yet to be done. Now I need to search my memory for the past five months and try to recreate it. Fun... just fun.

Physically - There isn't an inch of my body that doesn't hurt from coughing. My chest feels like it has a 50 pound weight sitting on it (yes I know what a 50 pound weight feels like). My throat is sore from the sinus drainage and coughing, my head hurts from the coughs ringing in my ears, my nose is starting to feel stuffy again, and my stomach hurts from squeezing it so much. Oh and my face is doing a lot of tingling the past few days because of all the irritation and inflammation I'm causing and my tooth is killing me!!!!

How's that for the honest truth of how I feel? Actually, there is one more thing physically that has caused me a dilemma tonight. When I am down with bronchitis I take a hot bath every night before bed to loosen up the mucus so I can sleep. After literally sweating all day today, I finally decided to take my temp. Guess what? It's 100 degrees F which is low grade fever. This can mean a number of things but I'm guessing it's either the ear infection rearing its head or I'm trying to get pneumonia. I'll keep my fingers crossed for ear infection right now. Anyway, I ended up taking a bath that was on the very warm side but not as hot as usual. So far so good.

Family - My son is doing much better in school this week and I am very proud of him. I'm also proud of John because he has been a lot better at talking to me about his feelings this week. It helps when we both talk about what's going on instead of a one sided conversation.

Play - Really, there wasn't much play going on this week. Last Sunday I did play Guitar Hero and was proud to complete 9 perfects on easy but the memory card corrupted it so now I get to start all over. :(

Test - This is the start of a new section. As I mentioned, I will be keeping careful records of my test scores on my "brain" games. Well, here is the first report:

Big Brain Academy DS: Test = 1335
Big Brain Academy WII: Test = 1473
Brain Age: Test = 30, 27
Brain Age II: Test = 32

Eventually I will have things graphed out and I can show them that way but we'll give it a few weeks worth of data first.

Well, off to go take my final medicines for the night and go to bed. Huggles

Some Very Interesting Testing Abound

Nothing major or intrusive or anything like that so don't worry. Actually, I may be a bit of a guinea pig in this particular testing. Let me explain. Most of the time when someone is diagnosed with a brain tumor it is too late. What I mean is that the tumor has started causing problems and it needs to be addressed immediately instead of waiting around. Therefore, there is very little if any time to run "baseline" type testing.

This is where I come in. I have the rare luxury of time. I have learned that doctors are very good about only telling you what has been scientifically proven. They don't mention the little things that can't be measured. For instance, I have learned that following brain surgery they put you on steroids to help minimize the pressure in the brain. I've had two doctors tell me this has no affect on you outside of that and one tell me that there have been noted changes in personality for a short time. However, from people who have been there, I know that there will be personality changes and most of the time drastic changes. Because this information can't be measured, doctors ignore it or blame it on the "stress of surgery".

So how is all this related? Well, my tumor is located in the frontal lobe of the brain. This is the personality center. I won't go into a lot of detail here but if your interested check out the Wiki page on it. I've basically been told that because my tumor is in the right frontal lobe and I'm right handed, surgery should not affect my personality because it's considered a "dead area". I do not trust or believe this information. I've seen otherwise with my own eyes and talked with people where this was not the case. Besides, I don't believe I am a fully "left brained" individual like they seem to think. Furthermore, it concerns me what could be affected because of the pressure in my brain. If that is suddenly removed, couldn't this cause issues? Am I having undetected personality changes from the tumor?

Well, no one has this answer or at least not an answer with any kind of proof behind it. Now obviously, I'm one person and not several like scientists like for tests but by watching my personality and cognitive scores, we could start to see patterns. Also, in the event that I should ever choose surgery or something along those lines, these tests could tell us if I really am the same as before that time. Interesting eh?

So next Wednesday (January 30) I am going to be taking the Minnesota Multiphasic Personality Inventory (MMPI) test to get a personality baseline. I will also be taking a Cognitive test to get a baseline there. I'm very interested to see the results and to track it over time. I know that David from one of the blogs I follow has had Cognitive type tests because of his being in the temporal lobe and he has seen changes.

As a little side note to this, I am going to start tracking my tests on my "brain" games and keep a very close eye to see if any patterns develop. I'll maybe add this to my weekly updates so you can see anything of interest. However, I reserve the right to begin it from now and not back when I got the games. LOL

I've Been Way to Quiet

Sorry for not writing in a while. I've been a bit busy and we all know what happens when you are busy. Anyway, I'll try to update best I can.

Saturday night we went dancing. We had a good time even though we didn't dance a lot. It worked out to our benefit. My Sinus pressure and bronchitis continued through Saturday so the fact I didn't dance that often kept me from getting severely winded. We had Kitchen Patrol Saturday night and that's why we didn't dance that much. Anyway, by Monday my bronchitis is in all of it's full glory including pushing me to take my inhaler so that I can walk from one side of the house to the other without keeling over from lack of oxygen. My bronchitis causes something called reactive airways which is basically asthma that is triggered by something. In my case that trigger is bronchitis. Anyway, the inhaler helps.

Sunday my son wasn't feeling well with sinus stuff and possibly a 24 hour bug because he complained his stomach hurt. He felt better by Monday. John went and picked up our new piece of furniture. It's leather recliner loveseat. I like it a lot. It's very comfortable and it has a console in the center so it adds a table without adding the table. (This is actually the one thing John liked that I didn't because it keeps me from curling up next to him but we still have our old loveseat to do that with.)

Anyway, I did get some work done around the house on Monday although not as much as I wanted.

Otherwise, I have what I believe is a cracked molar that is causing me some pain. (It's feeling much better so I'm stalling on calling the dentist until hopefully my cold goes away. If it starts hurting bad again, I will have to call him.) I am also having a lot of neck cracking since I was popped in the head on Saturday while at dance. (don't ask, long story) I am scheduled to see my chiropractor this afternoon so hopefully he'll be able to take care of that. I am also waiting for the scheduling on my MRI. If I haven't heard from my GP by Thursday, I will call them. Oh yeah, I also need to call my insurance since they have no screwed up the billing on their 3rd MRI for me. They keep billing as 80/20 but they are supposed to pay 100%. You'd think after three they'd put a note that it's 100 not 80/20. I might even mention it to them. It's getting old quickly that they keep charging me for it AND it's costing my doctor because they are sending me bills that are unnecessary.

Ok, that's enough rambling for now.

A Loving Farewell to Julian

I just read the message that Julian has gone to join God in heaven today. I have watched him for several months fight and seen his steady decline through the eyes of his mother. All of my thoughts and prayers are with his family today as they face the days that are to come. I thank them for sharing his story and for allowing him into our lives.

Rest in peace with no more pain King Julian.

Forever an Angel.

The Week In Review 1-18-2008

This has been a pretty quiet week all the way around.

Medically - Other than the start of bronchitis coming on the later part of the week, there is nothing going on medically. I didn't have any appointments this week, didn't make any headway with doctors, and basically didn't have any issues of note.

I had a long talk with my therapist this week. We were able to discuss a lot of things that has been on my mind and I am happy about the direction I am heading.

Emotionally - Where last week everything was wrong, this week everything was right. I basically had a good week and can't complain about how I felt emotionally.

Mentally - This week I did a lot of good preparations. I was able to work on a lot of the things I've been stalling on. I feel good about the overall progress. I now feel that my boys will be set with several of the very important things they will need if something should happen to me. However, there's still a lot to be done.

Physically - Beyond the bronchitis acting up, this has been a good physical week and I've actually started walking again on my treadmill. It feels good to walk again even if I don't prefer the treadmill much.

Family - Other than my son having some homework issues, things have been going well.

Play - I'm happy to know that the RPG on my Plano group has started up again. I love RPGing. I'm playing a custom made character named Cassie who is a blind healer.

Ok, that's about all this week. Not a lot to talk about. Sorry it's so lame but I'm happy for a quiet week.

Attitude is Half the Battle

A friend on one of my yahoo groups is going through a very stressful situation with her husband and his health. He is doing better at the moment but his battle has been long and at one point it looked as if he may be giving up. He is improving with her and other friends support although he still has a large battle before him. His journey has reminded me that the will to fight is half the battle and thus thought it would be good for my journal at this time.

You hear it as almost a cliche that attitude can make or break you when you are diagnosed with a serious illness. If you don't have the will to fight and win... then you won't. What's the use in fighting if you don't want to win? However, even when faced with odds that are stacked against you, the will to win can buy you strength and possibly even a miracle. I have many times been told that my attitude will carry me through this diagnosis and anything coming my way. After seeing others that are and have gone through similar issues, I believe that I will overcome this if for no reason other than I have the attitude to fight it until God decides otherwise.

Each step of the way I have been researching, analyzing, and just fighting hard to determine the best path to take. I have never sat back and let others make the decision for me and never taken any decision lightly. Every decision that I make in this journey is the one that I feel is best for me and my family. Every decision I make, I must be prepared to stand behind and fight to make it work. I am a fighter. I will never sit back and not fight for what I think is right. Even if that decision is not agreed on by others.

I guess this is to all of those out there facing battles of their own. Julian, Morris, Steve, Coleman, David, Carla, and everyone else riding the roller coaster... continue to fight and keep a positive attitude because attitude is half the battle. *Huggles to all*

Falling off the Update Wagon

I am so sorry that I haven't been updating like I should. It's just been a busy year so far and I haven't had time to do a lot of things I need to. However, I will try to update here and go from there.

In the "brain front" things have been going as expected although I have made some strides in trusting my neurosurgeon even more. I am even more comfortable with him as time passes and truly believe that I can trust him with my head and life. That's saying a lot because it's possible one day this will be reality. He truly is fabulous and one of the few doctors I know that will actually return calls to the patient himself to make sure it is totally understood. That does a lot for someone going through a situation like mine.

In other medically related news, I actually had three medical professionals make me cry last week but all were in a good way. It was just how much they truly care for me and it took me at a time I really needed to hear it so they were all good tears. :)

The more things have progressed with my diagnosis, the more blessed I realize I am to have a therapist that I click very well with. He is very much on the same line as my Neurosurgeon, chiropractor, and gyne in terms of the best in the business. He has done some amazing things with me to pull me through this and I owe him so much in that respect. I am just very glad to be able to call him a friend.

I think that sums up the medical issues from the last few weeks. Outside of non-tumor related "check-ups" nothing new took place. I am working now on getting the scheduling sorted out for my February MRI. This will be MRI number four when it is finally scheduled. We'll see if it gives good news or bad.

Beyond that we are enjoying several dances already in the new year and getting lots of good projects finished. I can't complain at all with where things are heading in our fun time.

I do, however, need to break into a small set of sad notes. Julian (a little boy I talked about in a previous entry) is not doing well at all and it is believed that his journey here will be over soon. Please keep him and his family in your prayers for either a miracle cure from God or a safe and quick entrance to be with God. Also, David from 38lemon which is a link on the right side of my page, has been diagnosed with a Grade 4 GBM and is about to embark on a fight that will take him through radiation and chemo in attempts to buy him some more time. David's site has been a HUGE source of information to me and has given me answers I have been unable to find elsewhere. He is an amazing man and I wish him all the best on this journey. I highly encourage anyone that has questions, about either what I am going through or what my own journey may include, to read this journal. He states the pure and simple truth and says much more eloquently many of the things I think and feel. Please keep them both in your prayers.

Ok, I've got other things to do now. I will try to get back to daily updates. I promise. Some time in the near future you will understand what has been going on and I can fill you in on everything.

The Week In Review 1-11-2008

This may end up being put into two separate entries this week. For one, A LOT happened this week. For two, I am on a time frame since I have to leave for dance in less than an hour. I will give the general overview however.

Medically - Wow, not sure where to start. This week I had a very informative call with my Neurosurgeon in Chicago that went very well. I also had a long talk with a friend who is "in the know" that cleared some things up for me. I had to see my therapist twice this week due to a nice little anxiety attack I had. All is well now and no problems in the horizon. Oh, and last but not least I got to visit my "scrooch down doc" today. All checked out and there will be a follow-up on this one later because he was my third health care provider to make me cry this week. (Don't worry, all three were good tears.) I may go into more details later but like I said, I'm rushed.

Emotionally - As sure as I was last week about my path... this week was a total turnaround. This was NOT a good week emotionally. Perhaps it was long overdue, I don't know. Again, I won't go into details because a lot of it deals with things I am not ready to discuss. However, my therapist pulled me from the deep dark and I'm doing splendidly now. :) What I faced this week was not unlike the attacks that sent me to the therapist back in June in the first place. Before anyone asks... I don't know if they are related to the tumor or not but they have always been trigger based and this time has been no different. So yes, they could be tumor related or it could just be part of the natural tendency of the females in my family that tend to be a bit... anxious over things. Mine just doesn't take shape unless it's something major. Don't worry, the week has been downloaded, just not here at the present. Some day they may be downloaded here but for now I wish to keep my privacy with this issue.

Mentally - I think this goes right along with emotionally this week. I didn't get crap done and most of it was because of my emotional state. We'll see what the new week brings.

Physically - I remain without issue. HaHaHa... Ok this has been a rough week with everything from sinus problems to the onset of allergies the later part of this week. It's no wonder since we have gone from one extreme to the other with weather. However, beyond that I am doing great.

Ok, that will have to end my update for now because I have to go. I will update on some other things including David (the lemon site on my links), Julian, and Coleman later. Who are they? Souls that have met my own and I gain strength from. Hugs to all and I'll update tomorrow.

When People Make a Difference

This week has been an eye-opening week for me and it has been thanks to some special people that make a difference in my life. I'd like to talk a bit about these special people in no particular order:

My neurosurgeon: He is a very special individual indeed. I have never met a doctor with so much compassion for his patients. Heck I've never met a doctor that actually makes his own phone calls much less one that will actually reply to an email with a phone call less than three hours after the email was sent. His quick replies to all of my concerns has made me even more confident in his abilities and the decisions I am making now and in the future. Of all the people that can have a profound impact on me both mentally and physically, he perhaps has the most power of all.

My Friends: All of my friends are special individuals that have made a difference in me over the past several months and some more so than others over the past several days. I wish to give a shoutout to my devoted comment leaver and friend, Jenn. No matter what my ramblings may be, she always reads and always reminds me that there are people whose lives I am touching with this and how amazing the internet is at connecting people. Jenn, I have everything crossed for you that the line stays put and gets even darker in the days to come. :)

My therapist: Some people are paid to make a difference in peoples lives. Some are better at that job than others and I have been blessed with that very sort of person. He is so much more to me than just a therapist. He has become a friend and his genuine concern is obvious. Sometimes it's when people go above and beyond in their profession that they make the biggest impact and that is exactly what he has done for me. I owe him a lot.

With that shoutout to three people that have made a huge difference in my life in very different ways... I leave you with an I LOVE YOU and on to another day. :)

It's Raining; It's Pouring... Yeah

Sorry I didn't post yesterday but I had no internet connection from home because of the rain. They are saying we got over 4 inches of rain from 4 PM til this AM. I can't complain much because I love listening to the rain and watching lightening but I do enjoy it more when it's not going on all night long.

I've been mentally pushing myself to the edge all week but everything is ok. I'm not going to let anything bring me down to much. I just keep reminding myself to smile because it could be worse.

I have had a few battles with friends this week over things but again, nothing serious. I have just quietly been reminding them that the right path is sometimes the hardest to navigate but at least they still have a choice in that path. Basically, it boiled down to getting tired of being told what to do when others are dealing with things and in serious denial about it. They aren't doing anything to control their problems, so why should I? Ok, so only the people that I confronted will have any clue what this all means and one of them doesn't know how to access the internet so I'll just let this lay now.

I have a new toy coming my way some time today. I am getting an iPhone. I'm really excited about it. I don't usually spend money on things like this but this will be more of a tool than a toy in the end. I really needed to invest in a PDA to help me keep on top of things. (Like not forgetting to take my meds every day at noon) Anyway, the iPhone will take care of my needs. I'll write all about it when I get it and finish playing with it.

We Had a Great Time

Last night we got to dance and I had a fabulous time. Dancing really is food for the soul. :)

We ended up having to sit out a few extra dances because I couldn't breathe from my stuffed up nose but we had a ball on the dances we did do. I also enjoyed meeting up with my dancing friends. They are all such great people and we have so much fun. Besides, dance is one of the few places I can go, be completely me, and forget everything else going on in my life for a few hours. Sometimes dance can give me a lot of strange feelings because of my age. You see, I am the youngest adult dancer in our club. (my son is the youngest dancer) I have always gotten along with those much older than me and honestly, most the time I fit in better with older generations. So I get along with everyone in dance very well. So most times we are equals, they are just older and wiser equals. However, since my diagnosis, they have become support and strength, they are almost like lots of Grandparents supporting me through the time. It feels good to have 60+ Grandparents.

Anyway, we had a great time and I hope to do it a lot in the next few weeks. I really want to get back into the swing of things. (no pun intended) Well, that's good for now. I just wanted to check in since I didn't yesterday.

The Week in Review 1-4-2008

Wow, it's weird typing 2008. :)

Medically - Wow, I do believe there was absolutely nothing new in the medical front this week. I didn't have any doctor's appointments this week... oh wait, I didn't but John did have. John had his "snip" follow-up and everything went well.

Emotionally - For the most part, I've been stable this week. It bothered me a bit that we were unable to go dancing on New Years Eve and therefore I had a bit of a down moment but, there will be other dances and other New Years Eve to dance to. I had some things playing on my emotions his week but after making a few tough decisions over the past 24 hours, I am feeling pretty good about the direction we are going. I'm confident that I'm on the right path and that makes a world of difference in my emotions.

Mentally - For actual mental... I'm as set and organized as I will ever be. (No funny cracks please) Prepared, I still have a lot of work to do but I'm continuing to make progress and feel good about the continued direction. I have begun a document that contains all the information I can possibly download that anyone dealing with John and I's estate would require. Notice that I did say John and I. This has not been my sole journey this is something we both need to do. If I cross anything significant I will be sure to write something about it.

Physically - Can't really give much on this because there's not much to tell. My sinus infection has set in full force as predicted but other than that... even my trigeminal was on its best behavior this week. I may be done with it by the end of the month yet. YEAH!!!

Family - Not really much to say here either other than I really enjoyed the last two weeks and being home with them. :)

Play - We finished off the holiday enjoying our new Christmas gifts and enjoyed the snow mobile on New Years Eve. I actually drove it without crashing!!! (Yes, big surprise there.) Otherwise, it was back to work on Wednesday. We are hoping to dance for the first time in over a month on Saturday so we'll see how things go.

Bye now.

To Snip, Not to Snip...

... That was the question. (Sorry couldn't resist.) As promised, this is the details on what occurred during my hubby's vasectomy. Please be advised that the following entry may not be suitable for the young, the squeamish, or those nearing their own snip.

The day was finally there and surprisingly, John wasn't showing many nerves. That's not to say he wasn't nervous, he just wasn't showing it. Leading up to the event, he had to avoid aspirin for a week, avoid alcohol (not that this was a problem), and shave the front of his scrotum the night before. I think the last task was the more difficult because we were both worried about cutting him with the razor and by his appointment the next day, he was already itching from the hair growing back.

Anyway, we were called back into the "out-patient surgery" room and watched a video on what they were going to do. Maybe this should have been our first clue that they were doing traditional vasectomy and not the no-scalpel but we both felt it was probably just a generic video. Regardless, the doctor then came in, told us some of the possible complications, and gave us papers to sign. (Possible complications include that the vas will reconnect thus making him fertile again and causing pregnancy, a 5 in 4000 chance that there will be a sneak that will make me pregnant even though he is reporting 0 counts, an infection that causes tremendous pain that may or may not be able to be treated and cured with antibiotics with the worse possible scenario being the removal of the testicle. Nothing like saving the worst possibilities for last.) After this was done, he left him a gown and told him to strip from the waist down leaving on his socks.

When they returned they had him lay on a table, flat on his back. Unlike some that I had heard, they did not use stirrups. Anyway, they put drapes around so that the only thing showing was the scrotum then sprayed them with the benetadine (not sure how to spell that). He cringed because it must have been cold. (For those curious, I was standing near his feet the entire time.) Then they took a needle and syringe, not all that much differently then a dentist might use although maybe the syringe was bigger. He felt around a bit to find what he was looking for then stuck it several times in the left side. John definitely cringed this time. From what I've heard from most, this is the worst part but poor John doesn't react very well with local and therefore this wasn't the last time he felt pain. (Not to scare others.)

The doctor waited for a few minutes for it to take affect and then he took a scalpel and made a cm or so incision. This was the first time that I realized this was NOT the no-scalpel method but by this time it was too late to bother complaining. You can't exactly change what is already done. He then took out and clamped a tiny section about the length of to the first knuckle of your index finger and again shot it with local. He then cut it with the scalpel and (I know the word but I can't spell it so I'm going with burned) it on both sides of the vas where the cut had been made. He then stitched it a single time on both sides. At this point, I noticed John's toes curl and realized he was feeling more than a little pulling. Just as I was about to ask him if he was feeling it, he cringed. The doctor quickly gave him more local. He had to do this four more times before it was over. (Told you he had a high tolerance for it.) In the end, I put my hand on his feet and he said that helped a lot.

Anyway, I'm not really sure what all was going on at this point. He finished stitching off the vas that he had and he went back in for something else, then increased the size of the cut. I thought that maybe he was doing the other side from that same entrance but I would later find out that was not the case. I should have probably asked him yesterday at the follow-up but I didn't want to embarrass John. The world may never know. Anyway, they basically did the same procedure again on that side then he got three stitches to close up the wound.

They repeated the procedure for the other side including three extra shots of local when he started feeling it. He only got two stitches in the right side. The doctor then put a gauze pad over the incisions on both sides, removed the drapes and the nurse and I helped him into a jock strap. That was quite interesting since he wasn't exactly in a chipper mood and hates jock straps but we managed. I then helped him off the table and into a pair of sweatpants and his tennis shoes. The doctor and nurse left instructions to change the gauze if there is any oozing, keep neosporin on it until it fully heals, and avoid intercourse and heavy lifting for 10 days. They also gave us a prescription for Tylenol with Codeine and gave us some last minute thoughts such as expect bruising, may be tender even after it starts healing, if it looks swollen and red come back in, frozen peas make good ice packs and should be used for the first 24-48 hours, and that the stitches will dissolve on their own about the time of the follow-up in 10 days.

We then went to the car, stopped at Walgreens to fill his script, and went home. He took the max of the pills in the car on the way home and stayed put on the couch until bedtime. He was very good about keeping them iced because it felt good.

By Sunday (<3 days) he was down to the minimum pain dose and was moving around pretty good. He even helped me with some light duty things in prep for Christmas. Other than being really moody (we'll forgive him) he was feeling decent. By Christmas eve he was only putting the gauze back on to protect his jock from the neosporin and he was a nice shade of purple over the top quarter of his scrotum and the lower half of the penis. This bruising would continue until around day 10 when it steadily minimized to little to none now (14 days). He went off of the prescribed pain meds the day after Christmas and used a few ibuprophen as needed but that wasn't often. By day 7 he was getting "feisty" and despite doctor's orders, he had as much fun as he could bear. He felt a bit funny afterwards but he said it still worked. :)

His stitches fell out at about day 8 or 9 and he was pretty much doing what he wanted by day 10 although he still didn't do much in the way of heavy lifting. It is still a bit tender now but it's a manageable tender and more along the lines of skin healing than anything. He still has scabs on both sides so we are keeping the neosporin on it. He also quit wearing his jock on day 10. He says that now the biggest thing that bothers him is crawling around combines at work (lots of stretching that is still irritating) and the hair growing back causing him to itch.

At the follow-up yesterday, they basically asked him a bunch of questions and gave him the "brown bag kit" to get his samples done to verify that the procedure was successful. He has to produce two 0 counts one week apart in order for him to be declared "sterile" (these are slated for week 8 and 9). In the meantime, he was prescribed lots of intercourse with an alternative method. Yes, he actually asked if he could get a prescription for that. *Rolls eyes*

So there you go, that's the story of the vasectomy. I think it may not have been a walk in the part but it wasn't the worst thing possible either.

It Was Back To Work

Well, today was my first day back at work since my vacation. It was pretty hectic so it went by pretty quickly. I sometimes question whether a nice vacation is worth it or not when you go back. Not only are you not ready to be back to work but you are bombarded with emails, voice mails, and brush fires. LOL

To top it all off, I was up way later last night than I wanted to be. My sinus pressure finally turned into full-blown infection and I struggled to breathe most of the night. When I was finally able to breathe, I started coughing. It looks like I will be down with both sinus and bronchitis real soon. I'm used to it. I have gotten it every year for as long as I can remember but that doesn't make it any more fun.

John finally had his follow-up from surgery today so I will probably post about that tomorrow since I did promise an entry about it. I'll try not to be leg-crossing detail but yet I want to keep it to my standards so we'll see what I come up with.

Well, that's enough rambling for now. I'm going to finish clearing out things from supper and then relax in a hot bath before bed. *Huggles*

What a Way to Start/End

You know what they say about the best laid plans... LOL. I was looking forward to dancing for the first time in over a month and being able to just totally lose myself in it, but mother nature had other ideas for us. Yesterday afternoon it decided to snow and it just kept up until it appeared to be enough on the ground to make things a bit treacherous. However, the snow wasn't the worst of it. The winds whipped at least 30 miles per hour all night long. We ended up deciding it was safer to stay home than be 30 miles from home in drifting snow on New Years. I don't trust drivers on New Years as it is, let alone in the above conditions.

So instead we stayed home and road the snow mobile for about an hour then played Harry Potter Scene It. We rang in the New Year watching the ball drop on TV. Not exactly the end to 2007 or the start of 2008 that I envisioned but it symboled last year very well. Enjoy the small things in life like winning at HP even though your hubby gets all the easy questions and you get all of Muggle questions that no one has a clue on. :) Oh, and as for the start of 2008, had we gone as planned, I would have enjoyed a long kiss from John and Midnight and hugs from all of my friends. As it was, we shouted "Happy New Year" and I fell asleep in his arms. I guess it's a fair trade off.

So here is to 2008. So many unknowns are yet to be decided, so much life is yet to be lived, and so much love is to being given. I love you all and wish you a fantastic 2008!!!