A Not So Typical Update

I'm so far behind on updates I'm not even sure what I have posted about and what I haven't. Therefore I apologize ahead of time if you get repeat information or things are in a really unusual order. Got a lot to update on.

I guess to go back as far as I think I have been since updating (I think we were preparing for vacation last time I updated). Our vacation was AMAZING!!! Definitely the trip of a lifetime. We had a great time at Disney, swimming with the dolphins was absolutely amazing, and the new Harry Potter theme section of Universal is totally cool. We were lucky enough to stay at the Animal Kingdom Resort at Disney and that was truly a worthwhile investment. It really added to the whole experience. We ate WAY too much while we were there but we got the dining package and that kept the costs to a 1/3 or less. Harry Potter was great!!! The Experience Ride was totally worth it and Butterbeer is just YUM! (Sorry for the non-Harry Potter fans that have no clue what I'm talking about). However, despite loving being immersed in the world of my favorite wizard, swimming with our dolphin Roxy took the top prize hands-down. I highly recommend you have this experience if you ever have the time. It is worth every penny. They are truly magnificent creatures. For those wanting to see pictures, they are all loaded on my facebook page http://www.facebook.com/album.php?aid=205440&id=1594381093&l=a8bda42f33 just click on the link to s

The other thing we all truly enjoyed was the experience of meeting family that either we have never met or haven't seen in ages. We were truly awed by the hospitality of all of the relatives we visited. Tim, Tammy, Becky, Grandma Ester, Tom, Polly, and all the kids!!! You guys truly helped us begin and end our trip on a high note. Then, not to be left out, it was great to come home and see John's dad who was visiting from his home in Texas (he basically took the North route why we were taking the South. LOL). We don't get to see him a lot but it's always a treat when we do.

Ok, I guess onto the total opposite of the fun we had on vacation. A few weeks after we returned, I began having what I thought was a sinus infection. It literally floored me for six weeks. After two rounds of antibiotics, it wasn't getting any better. Eventually, things weren't behaving as much like an infection and we ended up with an MRI. The MRI revealed a large amount of swelling in the right side of my head again. They put me on a steroid to try to help ease the swelling. Luckily, that also helped me get over the strange symptoms that I began having towards the end. We will be heading to Mayo for a consultation/additional testing on Friday (appointment at 10:30 AM) to see if we can determine what is going on. It could be one of many things still at this point whether it's scar tissue, regrowth, or something not yet considered we won't know until then. Therefore while we know there are a few different options depending, we don't know what route might be taken without knowing what is going on.

I guess, long story short, we are hoping and praying it is just some crazy benign issue that is causing me some swelling but we are lining things up if it isn't as benign.

I'll keep everyone posted as much as possible as we move along with updates. Now that I can actually stay out of bed longer than a few hours (I literally spent a week in bed a few weeks ago)

Until next update. All thoughts and prayers are appreciated and anyone I know of that is going through their own issues are in mine.

Huggles all

Amy

The Results are Officially In

The results of my last MRI are in and there is no change between it and the previous. I'm waiting for the nurse to talk with my doctor to find out when the next MRI will be but I'm guessing I'm good for another 4 months minimum.

I'm so glad I've learned to compare MRIs. It becomes a much more at ease week when you have a good idea of what to expect when you get the call.

Love ya all!

The Month in Review... October

So I'm running behind again. I have no excuse other than I have been VERY busy and it's taken me 5 days to write this update. (I've had to change the numbers three separate times!!!)

• I am 16 months past the partial resection of my malignant brain tumor
• It has been 13 months since I completed external beam radiation
• It has been nearly 5 months since my first complex partial seizure and 28 days until I can drive again. YAY!!!!
  
• It has been 2 years and 2.5 months since my brain tumor was discovered

Medically - I haven't had a month with this much to update in the medical category in a long time. As many of you probably are already aware, my follow-up MRI on October 8th showed what appeared to be an increase in the area of enhancement in comparison to the MRI performed in July. This prompted my Neurologist to tell me I should seek the opinion of my NeuroSurgeon to get a "second opinion" on what was going on. Of course, my NeuroSurgeon was fired back in January so it was time to take action on a few of the doctors I had been looking into. It was actually quite simple logic on my part. I figured if you don't succeed with what is considered one of the best in Illinois, then you take it up a notch and you go to the best in the country. This is, of course, what sent us on a road trip two days before Halloween to Rochester, Minnesota which is the home of Mayo Clinic.

The Neurologists that I talked with were great. I really liked their philosophies, the fact they never hesitated to answer my questions, and that they actually agreed with me on some of my views about certain things. They agreed that I made the right decision to decline Temodar after surgery as well as that my last NeuroSurgeon really should have answered the questions that I asked. They were common questions actually of "very informed" patients and they were not unreasonable. They actually seemed quite concerned that he didn't answer these questions and I could tell they were making mental notes of this for future reference. (Questions that we referred to were, "Where was the cranial plate removed?" and "What percentage of the tumor was Grade Three?")

Anyway, in the end, I felt very comfortable with them and they collectively agreed that we were still in the 6 months - 2 year window where the most post-radiation change occurs and that there was not enough change to warrant starting me on any additional treatments as of yet. We all agreed we would schedule an 8 week MRI and we also discussed possibilities that would be available to us should there be concern in any of the upcoming MRIs, including working with my Neurologist back home to line up the correct team should further treatment be required.

While I was not as impressed with the NeuroSurgeon, he was straightforward, honest, and to the point so I couldn't have asked for anything more. He is better than all my previous NeuroSurgeons, except for the one I had originally chose to do my surgery, but then again, I'm not sure there is anyone that is as effective at communicating as he was. He gave us additional thoughts to ponder about my options for treatment should it be needed but he also was in agreement that there was not enough there at the moment to require action right now.

I did finally get a reply from my first NeuroSurgeons office but I am still waiting to receive the corrected documents so that I can send the information to my insurance for claims processing. Hopefully, before the end of the year, we can finally put this issue to rest. My Psychiatrist's office is still working on getting the claims properly submitted for my medication as well. We did, what is hopefully the last, submission of the claims to insurance this past week. "Behavioral issues resulting in trauma to the frontal lobes region of the brain." (or something like that)

And finally, I had a visit with my Radiation Oncologist yesterday and I have been OFFICIALLY RELEASED from his care!!!!! That means one less doctor I need to keep updated with. This is good news and truly shows the progress I've made.

I think that finally wraps up how things went in the medical arena for October.

Emotionally - It's been a roller coaster this past month. Not only was I dealing with the unknown questions about my tumor but now I'm trying to sort things out to deal with the upcoming shutdown of the plant I work at. Not been a good month but for the most part I've managed to keep relatively stable.

Mentally - Honestly, as crazy as things have been, I haven't been paying much attention to my mental functions other than I know it doesn't take much stimulation to exhaust me.

Physically - I think exhausted is the best word. I've been (successfully so far) fighting off bronchitis and sinus issues, an increase in the number of headaches, and some cases of insomnia of late. None of the three go together well when you are also more or less a "single" parent, dealing with several projects at work, trying to make decisions that affect you and your family's whole future, and just basically swamped with things you need to get done at home. Since John has been working the major hours (He has been putting in 30-50 hours of OVERTIME in each two week paycheck) the house has pretty much fallen apart. I get home an hour later than I did when I could drive so that by the time you get home, relax for a few minutes, eat supper, do dishes, throw in a load of laundry, and take a shower... it's way past bedtime. Soon enough we'll get back into our old routine again. I can't wait to get the ok to drive again. It's been a long 6 months. However, we are almost through it and there is no way I could have done it without my parents and the help of many friends. Mom, Dad, Andy, Robyn, Scott, Jamie, Michelle, Hillary, and everyone else who has given us rides where we have needed to be... THANK YOU!!!

Work - This earns its own topic category this month. Just before I went to Mayo, it was announced that my parent company is going to shut down our plant and move the product to Mexico. We do not have a definite time-line yet but there are several that have said that June-August is the estimated time-frame. I'm really not too worried about it. I have several options open to me and it's really going to be a matter of weighing which option is the best for me. There are both full-time and part-time options in my future and they both have their pros and cons. The good news is that John and I can live off of his salary if needed with the exception of what it would cost to have me added to his medical insurance. Therefore, I know that I just need to make enough money to cover the "fun extras" and my medical costs. I can't recalculate those numbers until his plan information is available in a few weeks but I think it can be met pretty easily if I can find either seasonal or part-time work. Might even be able to make it with money I can make with my own "business" by working on computers for people. I'd have to look into the headache that would be first. I will keep this issue posted after I know more but for now, I'm not too concerned with it. We have a solid savings and have already begun cutting back so regardless of what I choose, we will be ready.

Along with the site closing has come many new opportunities for me at work. For the first time in my career I have started "officially" leading a project. One of the projects is within my group of teammates and the other is at a higher level where it will be visible by a lot of people that are pretty high up in the company. I won't deny that I'm scared as hell about the higher level project. I'm not as confident in my abilities to lead projects as I might have once been. I can't deny that there is enough change in my mental capabilities that I'm not sure I'm fully capable. However, I don't back down from challenges and I'm not going to start now! I look forward to the challenge and I hope I'm both physically and mentally able to handle the projects. I figure, if nothing else, it will look good on the resume.

Family - John continues to work the crazy long hours. He's exhausted every night when he gets home and usually I see him long enough to direct him to where supper is and kiss him good night. Luckily, the weather has been decent for the last several days so the farmers are finally making some good progress in the fields. I'm hoping it will stay good long enough that they will be done before the Christmas holidays and therefore John will have no trouble taking his week off between Christmas and New Years like we always do.

My son is still struggling with attitude AND school. He's doing decent in the actual academics if he can just keep himself out of trouble. He's managed to get himself another day of "0" this quarter. I would have thought he would have learned last quarter when what should have been B's and C's ended up being D's. I know this summer/fall has been as hard on him as it has been on the rest of us and I really want to believe that is part of it. Hopefully, when we get back to a normal routine, he will start getting back to a little more normal.

Play - Haven't been doing a whole lot of play although I'll take this opportunity to talk a bit about our trip to Mayo and some of the things we did while there. I have to give them credit, they have made the area a really nice place for patients and their caregivers to be should the need arise. The buildings are beautiful, very well designed and thought out. Beautiful architecture, history around every corner, and really had more of a feeling of home than I ever dreamed a hospital/doctor's office could have. We enjoyed our time there even if it did rain most of it and yes we did have a bit of time for site-seeing. That Thursday night we decided to celebrate that they didn't feel there was any concern of yet and we ate at a fabulous restaurant not far from our hotel. It was definitely ritzier than anything I've ever been to but hey, we were celebrating! We had a great meal with fabulous staff and it really just made me feel wonderful. It was our splurge and after the 7.5 hour drive to get there, I think it was very deserved.

Oh, and we were able to enjoy a good ole A&W restaurant as well on the way home! It appears there are a lot more of them up that way than there are down here. I haven't been to one in ages. Nothing beats a good ole diet A&W and burger!

That's really all of the serious "play" we've been able to do. We didn't really get to do anything for Halloween since harvest was so crazy and I couldn't drive. I told John we'll have to make it up next year. JJ and I will do it without him if he's too busy! I haven't been to a good haunted house in some time so I'm WAY overdue and I've never made it to the Haunted Hayride so that's definitely on the list for next year even if there is a three hour wait!

We have missed the last few dances as well. Unfortunately, when John doesn't get home until 10 minutes before the dance is supposed to start, it makes it difficult to attend. There's a dance this weekend if he gets off in time but I'm not going to get my hopes up even if I'd love to be at this one because we've never danced to this Caller before.

Relay - Yes, the Relay season has started anew! I'm super excited about it now that I actually know what I am doing. I had the privilege of attending the Relay Academy this year and I've got tons of things floating through my mind about it. (More behind the scenes stuff than actual team stuff although some of that too.) I'm determined to have a full 15 person team this year! So, if anyone would like to join me, do let me know. You all know if you are in my area or not. ;)

Also at Academy, I was able to give my first "public speaking" presentation. I was asked to tell my story at the Survivor portion of the Academy. I loved doing it and I really hope that I'll have many more opportunities to speak. As you all know, I love to talk so it really comes naturally to me. I have already been asked to speak at one of the local Relays that I attended last year and I'm really excited about that. Now I have 9 months to think about it before I get to give it!!! I need to talk with them about what angle the want me to take though. Honestly, this is something I've thought about doing as a "side-profession". What more can you ask for than to spread the word about brain tumors/cancer, Relay For Life, the Fight of a Survivor, and just plain motivational speaking? It's something I would love to do so if you need someone to speak at something and you are looking at anything down one of these paths, let me know. I might just be available. :)

I will be putting up donation banners when I get it all sorted out so be on the lookout!

Don't ever say "I can't" always say "I will"!!!

Love ya all and many huggles!!!

How Do You Spell Relief?

B-I-R-T-H-M-A-R-K

Well, just as I felt, the bone scan came back clean. :)

My GP wants to do a follow-up on Wednesday. I sure there is a battery of tests they will still want to perform to rule out anything else. However, there will be no more tests. I'm done with it.

Luckily, I also received a call from my NeuroSurgeon today. He is certain it is merely a birthmark... aka hemangioma. It's nothing to worry about although we may watch it just to make sure it doesn't try to invade space that my spinal cord should have to its lonesome. After holding my breath for a week, I can now breathe and the future doesn't look quite as grim. I trust this man with my life, and there's a reason. He doesn't need to scare you unnecessarily and honestly, I suspect he would have never even ordered a bone scan but it wasn't his decision to make at the time.

I trust his diagnosis. I trust him. So the plan will be simple. I will have MRIs for the rest of my life for my brain tumor. Now I'll occasionally have a head/neck MRI to make sure the hemangioma isn't growing.

You wouldn't believe how much this makes me feel better. *Huggles*

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.

This Week in Review Update

Ok, shortly after I finished up my last week in review, I received a call from my doctor with the results of my MRI. For the most part they are unremarkable and everything appears to be "normal" for me. :)

There was some slight noted change but due to there being a new coil, fighting a sinus infection, and it being nothing significant, it will not convince me to take quicker action as of now. If this type of report continues, I may reconsider June as full resection instead of biopsy but we'll worry about that later.

Therefore, no change in plans at this time. Just wanted to give you all the update.

I Hate Waiting for News

Well, I just got off the phone with the nurse and they still don't have the radiology report from my MRI. I hate waiting around to know whether everything is good or not. Especially since they changed things on me and therefore I can't tell. At least last time I was able to pull up the exact same scans and see that there was absolutely no change. I'm not sure which two scans are the same under this new system.

Anyway, we got our car back yesterday. Of course it wouldn't act up for them but they did replace the switch so hopefully it won't do it again. I really hope not anyway. Dang lemon anyway.

Well, it's just a short shout out. Tomorrow is John's snip so I probably won't write until late and I don't yet know what the weekend will bring because I will be busy with getting ready for Christmas. I will keep you as posted as possible.

Huggles

I am Not a Doctor...

...and I don't play one on TV, therefore I am choosing not to comment on my MRI results until I get the official radiology report. How's that for being very ornery of me?

I will vent a bit about my MRI and I will give you some results from my EEG, however. What do you want first, the good news or the bad? Oh? Really? Ok then I guess I'll give the bad news first. The have changed the way they do MRIs at the clinic I get them at. No longer can I get by with them injecting the contrast with a simple shot. Oh no, that was to easy. Now they actually put an IV line in to do it. (Have I ever mentioned I hate IVs?) It's a change of policy. Apparently they had someone have an allergic reaction to the contrast and they had problems finding a vein to inject medication into. Therefore, they've started leaving it in while there is no problem so that they don't hit it again. (Have I ever mentioned that I hate IVs?) What's this mean? Instead of a minor puncture wound that is tender for a few hours, I now get a huge puncture wound that hurts for days. (Have I ever mentioned that I hate IVs?) Furthermore, this thing has to remain in through the entire latter half of the test totaling about 15 minutes. Do you know how lousy this is for someone that doesn't like IVs? Having to lay completely still for 15 minutes with this thing sticking in your arm. Oh and to top it off, I hate IVs. Have I ever mentioned that before?

Ok, I also received the results of my EEG today. Great news, no seizures. As a matter of fact they didn't notice any change over the area that is my tumor either. I guess that typically this is considered a "dead" area and doesn't show any activity at all or something along those lines. Mine shows no change in comparison and my activity was constant with no fluctuations. This is really good news although I'm not sure what the "no change over tumor" means other than to confuse me even more.

Ok, I guess that about sums it up. I promise, as soon as I get the radiology report from the doctor, I will let you know the results of the MRI. All I will say until then is that they changed some coils in the MRI machine and therefore it is near impossible to tell if there is any change or not by comparing the two scans. Because I don't understand what might have changed with the machine, I'm not making any guesses on it. Talk to you all soon.

Why is The Size Questionable?

When telling my story and talking about my three opinions, one of the first questions I typically get is: "How can they not know how big it is?" Well, here's the answer illustrated to the best of my abilities.

The picture on the left is of the lower portion of my brain. It is mostly normal. As you can see, other than some minor areas where there are creases in the brain (this is normal), it is consistent. This is what a brain should look like throughout an MRI scan.








The picture on the right is my brain where the tumor is located. (The right side is on the left) You can clearly see an area pointed out by the black arrow that is more than likely tumor. It is almost perfectly round, has well-defined edges, and is about 3 cm by 2 cm in size. Easy enough, eh?

The question comes in when you look at the area pointed out by the green arrow. This large area around it is also discolored but what is it? Is this tumor? Is it edema (swelling)? Just what is this area? That's exactly what we are hoping to find out at some point. In looking at the scan and looking at the fact I am having no symptoms from this, you want to believe that only the small area is tumor.

However, when you look closer, you see that the brain has been pushed from it's center point and there is pressure occurring on the other side because of it. The brain should have a straight line going up through the center of it dividing the two lobes. My brain does not. This is squishing occurring because of the tumor. Looking at it that way, it doesn't seem possible that the smaller tumor could do that much pushing and you notice that the pushing starts down where the larger area is.

Ah to ponder the human brain and it's amazing abilities. If indeed it is as large as the second mass, I have to ask myself how I am still functioning day to day. It's hard to imagine that something the size of an orange cut in half, can be placed in something the size of a cantaloupe and not cause enough damage to have some signs. I guess my brain is just doing it's job and rerouting as it sees fit. :)

Maybe this was a bit TMI for some but I do hope this helps clear that question mark in your mind about why there can be a question as to the size of my tumor.

Still Trying to Sink In

Well, I haven't gone over the voice recording from this appointment nor have I truly let it all settle in my head yet but here's the information I have from my appointment today.

I am not a candidate for Gamma Knife according to the neurosurgeon we spoke with today. We ended up with more food for thought than anything. (Literally...) Anyway, he doesn't believe that the "swelling" that my local neurosurgeon is seeing is actually swelling. He believes it is tumor. He believes it is still a low grade glioma but rather than being 3 cm by 2 cm, he believes it is closer to the size of half an orange or about 6 cm in size. (Cut an orange in half and you are holding my tumor) This is a significant change from what my local neurosurgeon believes.

I will be seeking a third opinion with the hopes that the third doctor agrees with one of them. Only then will I truly be able to sit and reflect on what is going on. Unfortunately, even if I don't want to, I have to feel that this guy is probably right. Where my local neurosurgeon may have seen a few hundred, this guy has probably seen hundreds or thousands more. Not easy to accept in the slightest.

Unlike my local NS, he believes surgery is the best option even with the risks. He feels with 85% certainty he could remove the entire tumor. There would be risks because there is the "motor strip" which is in the form of an artery that controls my left leg. However, he believes that with an interoperative MRI, it can be removed safely.

My current path has not changed. I will not be going into surgery any time in the near future. I stand by my decision that as long as I am not experiencing problems from this tumor, I will not be doing anything with it. However, it is time to pump up the speed in which I am preparing, just in case it does come to problems. Obviously, my mood on this will probably change 100 times but if there are symptoms that develop... I will reluctantly consider surgery.

I appreciate everyone's continued thoughts and prayers and I will continue to keep you all updated. I will probably give a better blog entry when this all settles a bit in my own mind.

Love ya all.

There's Proof of a Brain

Ok, so my MRI was moved up to yesterday instead of Thursday. It appears they had a possible scheduling conflict and didn't want me to have to wait around Thursday so they had a cancellation and moved me in. Of course, this didn't bother me any because now I have a chance of getting my radiology report before the appointment on Friday.

Anyway, the only proven fact I have from this MRI is that there is proof of a brain up there. The brain matter is there, appears to be healthy, and since I'm functioning must be doing its job. :) I was able to get my scans, however, and although I can not see the infinite details, there does not seem to be any change. If you compare the two scans side by side, they appear to be exactly the same so I think we are good this time.

I will follow-up either today or tomorrow with my promised detail description of an MRI.