1 year later

So as the 1 year mark of my diagnosis approaches I thought I'd give you all some facts about brain injuries.
As most of you know, the tumor was on the right side of my brain. It was right where the parietal, temporal and frontal lobes connect. Because it was touching all of them, removal damaged all 3 lobes. What does this mean? Well, it means that I have some disabilities from all three lobes, but not everything that is controlled by these lobes has been affected. Here is a list of things that are controlled by the right side of the brain:

Injuries of the right side of the brain can cause:

• Visual-spatia
• Visual memory deficits
• Left neglect (inattention to the left side of the body)
• Decreased awareness of deficits
• Altered creativity and music perception
• Loss of “the big picture” type of thinking
• Decreased control over left-sided body movements        

The things that I am dealing with are: Visual-spatial impairment- I only have this problem when picking something up or something that is far away; Left neglect- my left hand is almost useless, I have no feeling in my palm which makes it very hard to use especially when picking things up and when I'm typing; Loss of the big picture type thinking- It is very hard for me to think and understand plans for the future, Adam usually has to break it down in small parts in order for me to understand the end result;

Here is a list of things controlled by the temporal lobe:

Temporal Lobe Functions

• Memory
• Understanding language (receptive language)
• Sequencing 
• Hearing
• Organization

My memory is horrible now. If I don't write something down I WILL forget it. An example is the other day Adam asked me to get him a snack when I went into the gas station. I walked in, got drinks and the boys a snack and then paid and left. Totally forgot about Adam's snack and there was less than 5 minutes since he had asked me.

When someone talks to me it takes me a few seconds to process what they say before I can respond.

I can no longer do one thing while listening to someone talk to me. I don't know why, but my brain can't handle doing 2 things at once anymore.

Here is a list of things controlled by the frontal lobe:

Frontal Lobe Functions

• Attention and concentration
• Self-monitoring
• Organization
• Speaking (expressive language)
• Motor planning and initiation
• Awareness of abilities and limitations
• Personality
• Mental flexibility
• Inhibition of behavior
• Emotions
• Problem solving 
• Planning 

My concentration isn't bad when talking to someone, but reading is a challenge for me now especially if I am reading something like a history book. 

Speaking- I find myself tripping over my words a lot now. It is frustrating because I know what I want to say, but it doesn't come out the way I want to say it!

I have a really hard time accepting my limitations. I can't lift or hold anything in my left arm, but I always try. I also have a hard time picking up heavy things and I have a hard time holding the boys for a long period of time. The hardest thing to accept is the fact that I can't carry my boys when their legs get tired because if I do, I hurt later. 

Personality-- my personality has changed in the sense that I get angry really easily now. Something that used to not bother me will enrage me now. I'm working on how to control this though and hoping I can get back to how it was before.

Emotions--this goes along with my personality, sometimes I feel like I have no control over my emotions. 

Lastly, things controlled by the parietal lobe:

Parietal Lobe Functions Sense of touch Spatial perception Differentiation (identification) of size, shapes, and colors Visual perception As I mentioned above, I have pretty much no sense of touch in my left hand. One day Adam was pinching my palm as hard as he could and I didn't even notice until he told me to look at him. This makes it hard to pick stuff up and hold stuff in my left hand. The only issue I have with visual perception is long distance, same goes for spatial perception. I didn't make this post so people will feel sorry for me. I made this post so others could see that even though I am in remission, I'm still dealing with issues caused by the tumor and that even though I look fine on the outside, there are many things that I still struggle with everyday.

Good news :)

So everyone is yelling at me because I haven't posted an update. Well, my last treatment was 12/13 and they told me to have a mri done the beginning of Jan. We went in the first week of Jan and had it done, but wouldn't get the results until the following week. I felt pretty confident going in to the mri and even better when the tech pulled me aside and said, "I see you don't get the official results until nest week so I want to tell you that even though I'm not a radiologist your mri looks way better than the one you had in October." Well, we went in the following week to get the results. Dr. Bernat tortured us and did a head to toe exam, then talked to us about how I was feeling. Finally after being in the room for 20 minutes he said, "So, you want your mri results?" I almost started crying when he said, "There is no sign of regrowth. The only thing I see is some minor swelling." The plan is a mri every 3 months for at least a year alternating between just brain mri's and full brain/spine mri's. We also saw the surgeon that same week. He weened me off my Keppra(anti-seizure med), told me that after I have been off for a full week I can drive again and said he doesn't need to see me until July unless something shows on the mri I have done in March. Adam has gone back to work, but he is only working half days until next week because he is worried about me having a seizure. I had a pretty nasty cold that I am finally over after almost a month and finally starting to get back to doing housewife/mom stuff. Up until this past week I still got tired easily and needed a nap, but I think I am finally able to take care of the boys all day and be okay. I am very excited to finally be able to get back doing normal things and not needing help. It is so great being able to pick up the kids too! We are trying to plan a trip home since I miss all of my family and we have a new niece to spoil. We aren't exactly sure when since it all depends on when Adam can get the time off. I will be sure to let everyone back home know when we know!

Oh yea--I always tell everyone I always go big or go home. Here is the proof. We asked the surgeon how many brain tumors like mine he has seen. He said out of his 20 years of practicing and 1000's of brain tumors he has worked with I am only the 3rd he has seen. I told Adam I just don't want anyone to copy me ;)

It's been awhile :)

So I noticed it has been almost a month since I posted anything new. WHOOPS. I just haven't really had much to say so I didn't have anything to post I guess. :) Treatment is still going good, it is hard to believe I only have 7 radiation treatments left! So far everything is going as planned minus a bad case of thrush which they kind of expected since I'm on steroids, but I've been taking the meds and it is clearing up nicely now. I lost my hair about 2 weeks ago? It was really hard on me the first few days, but I'm okay with it now. Nancy hooks me up at least once a week with a new beanie so I have lots to switch out with. I have been pretty tired lately but that is something to be expected and as long as I rest often and don't over do it I'm fine. We are in the process of setting up a consultation with Dr. Korec who is the Chemo doctor so I will be sure to keep everyone posted on that. Right now we are thinking my last radiation treatment will be the 13th and then they say I will most likely have a break before Chemo and not start until the new year, but we of course won't know for sure until we talk to Dr. Korec himself. Overall, I must say I'm doing pretty good, I have bad days but who doesn't right??

In other news, Austin will be one on the 15th..WHERE has the time gone? I swear I was just finding out we were pregnant with him!! He is the total opposite of Aidyn too. As most of you know Aidyn has always been our relaxed kid. Didn't crawl until a year, didn't walk until 18 1/2 months, never really got into anything(still doesn't). Austin on the other hand, that kid keeps us on our toes! He started "army" crawling around 7 months, then started cruising along the furniture about 10 months and now he full on crawls, can stand on his own, and will walk just holding on to one of your hands. Pretty sure he will be walking on his own by the end of the year if not sooner. He also gets into everything and anything. Seriously, you can't look away from him for even a second because that is all it takes for him to be on top of something. The kid has NO fear. He will stack things on top of each other so he can climb on them and get to something he wants. Poor Aidyn, nothing is safe anymore. We have to make sure any food we give Aidyn is up on a super high table or make sure that it is small enough that Austin won't choke on it if he gets a hold of it. Which leads me to Austin's eating. We ideally wanted to slowly switch him to table food and have him fully transitioned at around 13 months like we did with Aidyn. Well, Austin had other plans apparently. He will not allow you to feed him anymore and will only eat if we give him finger foods. Granted, this scared the crap out of me because I was so worried about him choking. Yea, no issues there! I swear he eats more than Aidyn does! I have no clue where the kid puts it all, but I'm sure it's since he is always moving, he never stops. Not even to be changed, you get about 3 seconds to fully change him and he is done laying still. Which of course means all those cute 12 month onsies and outfits we bought him like a month ago? Yea, we are getting rid of them because snaps and austin don't mix well lol.

Aidyn is good for the most part. He has hit the lovely age of constant fits for no reason. Really drives us nuts some days. He also has developed a little attitude, some things that come out of his mouth absolutely shock me. I want my sweet little boy back and not this little attitude child! A lot of friends of mine with kids the same age are going through it too so I know it will pass, but hurry up! lol

For some reason this year I am really excited for Christmas. I don't know if it because Aidyn knows more about what is going on or what but I have been super excited about decorating and doing crafts and baking this year! Aidyn and daddy usually do some small craft at least once a week, this week they made cookies for mommy and made trains to hang up. Aidyn also makes sure he plugs in the tree and all the indoor lights every day when he wakes up and unplugs them every night before bed. It is so cute! I think this week I'm going to see if I can't find a little fake tree to put up in the boys' room on their dresser, I haven't decided yet though. We haven't hung any decorations outside though because our lovely house only has one outlet and it is on our patio so it would be a royal pain to put lights up which is a bummer, but such is life right? I hope you all are having a wonderful holiday season!!! I added a photo from Austin's 1st snow experience for you all to enjoy :)

1 week down

So yesterday morning I completed my 5th radiation treatment. So far it has been too horrible. The first day was hell, I'm not going to lie. I felt pretty good after my treatment so I decided that I was going to go trick or treating with the boys. We were only out for about an hour and I felt fine the hole time, but as soon as we got home I started feeling crappy. Within 30 minutes of being home I was nauseated and vomiting. It was miserable. I knew I needed to eat something though so I asked Adam to make me some soup. Even though I could only eat about half of it, it made me feel better and I was able to fall asleep. On Tuesday morning I felt normal again just a little tired. The first thing I asked for when I walked in the doctor's office on Tuesday was something for nausea. Luckily for me Dr. Bernat is the bomb and wrote me a script no questions asked. So, after treatment was over we got it filled and I now make sure to take it no more then an hour after treatment and I don't get sick anymore :). Other than that I feel pretty good, just tired. Today I feel really good, actually normal which I'm sure is because it is Saturday which means no treatment and I had my treatment at 11 yesterday instead of 3 since they close early on Fridays. One thing that is annoying is the skin on my face is super dry, which by the way is just one of the lovely side effects of radiation on your head. I have a fantastic friend who has gone through radiation herself and she is going to get me some awesome stuff to help me out though :). Those of you that follow me on Fb know that my lumbar puncture came back normal which is amazing news. It seems we caught this very very early which makes my chances of "cure" much higher. I put cure in quotations because you are never actually cured when it comes to cancer, one of the nature's of the beast as Dr. Bernat would say.(Never cured meaning that even if you go into remission, it can come back at anytime, even in different places in your body which is why I will be monitored very closely for the rest of my life.)  Other then that life is pretty boring. I tire easily which means we don't go out of the house much since I usually want to take a nap at some point during the afternoon. We are in the process of finding a new car since my lease is up the end of next month and a sedan just isn't big enough for us anymore. Luckily, my dad is doing most of the researching for us back in CO and Adam and him have been conversing about it. I fully trust their choices since my dad is a retired mechanic, and Adam not only knows my likes/dislikes but he also knows a lot about cars from his years at Saturn. Right now it is looking like we will be getting a Honda CR-V, a Hyundai Tucson or a Nissan Rogue. My personal favorites are the Hyundai and Nissan ;)

Oh and for those of you who were curious what my treatments are like. Well I go in and first thing I do is take everything from my waist up off and put on a sexy gown. Then I have to lay face down on a table with my forehead on one platform thing and my chin(aka my mouth haha) on another. Then Nancy (my lovely radiation therapist) puts this horrible fantastic mask over my head which makes it so I can't move my head at all. Then she raises me up in the air and makes sure I'm lined up right. Then she does 4 different beams. One on each side of my head, one on the top of my head and one on my lower head/upper neck. I think this will change a little this week though since they will eventually treat my entire spine. Here is a picture of the mask I get to wear. (except mine goes over the back of my head instead of over my face)

1 month

So today marks one moth since our lives changed. I know I went to the ER on the 27th, but today marks 4 weeks. I can't believe it. It seems like the world has stood still for the last month, but at the same time so much has happened. As most of you know my MRI results came back clean. No tumors or evidence of seeding(the start of a tumor) were present anywhere on my spine or neck. I had my lumbar puncture done on Friday and it wasn't nearly as bad as I thought it would be. The doctor that did it was amazing and made me feel very relaxed because he talked to me the entire time. We haven't gotten the results back yet but we should get them sometime this week or early next week. I also will be starting radiation next week, we aren't sure what day yet as we are waiting for a call from the radiation tech. It is going to be a long 6 weeks but I'm ready and I'm feeling pretty positive about it!
    So about a week ago Adam, my mom and I were talking. It is truly amazing how God has plans for you that you don't even think anything about until later. I say this because if it wasn't for a few things happening in the last 2 years things would be a lot worse then they are. Everyone knows  that Adam is in the Air Force. What you may not know is that joining the military isn't something he always wanted and wasn't something he even took a long time to think about. He woke up one day and decided he wanted to join so he asked me what I thought and I told him I supported him 100% in anything he wanted to do. After we got married(about a month after we talked about him joining) he went down and saw a recruiter. He was sworn in a month after that and was placed in the delayed entry program. This pretty much means he had to attend meetings once a month while he waited for a ship date for BMT. He wanted to go into the mental health field and he was told that jobs were hard to come by in that field and he probably wouldn't get a contract until March and probably wouldn't ship to bmt until May or later. Well then about a week before Christmas he got a phone call from his recruiter that he had an open mechanical contract with a ship date of Jan 26. We talked it over and finally decided that he should take it because he would be happy in a maintenance job. Fast forward 7 months to us moving to our first base. We weren't too thrilled to say the least. We were getting stationed at Holloman AFB which was in the middle of no where. Literally. As some of you know before Adam joined our insurance was crappy and didn't pay for jack shit. So what does this have to do with anything you ask? Well while we were talking it made us realize that if Adam hadn't decided to join we wouldn't have good insurance and there is no way we would be able to afford the care I was going to need. In case anyone was curious we are already pretty close to $200,000 if not more. Luckily since we have Tricare Prime, everything is covered 100%. Also, this horrible base? Turned out to be a blessing. Not only are the people here amazing (Not just the friends we have made but everyone in Adam's squadron),but the neurosurgeon that removed the tumor? Yea, he is ranked #1 in the country.  So this has taught us that even though we may not know God's plan for us or even that he plays a role in our decisions he always has a plan and we are just along for the ride. So I want everyone to remember that God has a plan for everyone and even if you don't like it know that he is putting you through certain things for a reason. Even if you don't learn what that reason is for years to come :)
  Lastly, it looks like shirts are going to be $15 plus shipping. Shipping is $4.95 through the post office if we use a flat rate envelope which we are thinking will hold 2 shirts. I am going to look at UPS and see if I can find anything cheaper. If anyone knows any good deals on shipping let me know :) I have set up an email account for sending orders and a paypal account. If you want them to make an order I'll give you the info. I'm not sure when we will place an order, but I'm hoping to do it before the holidays. Also, I have decided to donate the proceeds to the National Brain Tumor Association.

The balls rolling

I thought I would just update everyone on appointments we have next week. First up is the mri of my spine. We go in on Monday at 1pm to have the mri done, not sure when we will get the results from it though. We go in Wednesday at 2:30 pm to get fitted for the lovely mask I get to wear during radiation and then I am scheduled at 4:15 for a ct scan that will be used for radiation planning. Pretty much means they will do a CT scan to get a picture of my brain so they know exactly what angles to "shoot" the radiation to ensure it hits all the right parts. I also want to add a picture of the mri that the doctor gave us on Wednesday. It is a side by side with the picture on the left being the mri that was taken before my surgery and the one on the right being the mri that was taken 24 hrs post op. You can't miss the tumor so I don't think I need to explain where it is. On the 2nd MRI though, the white you see they think is residual blood from the surgery. I will also add that even though it appears the tumor is on the left side it is a frontal view of my brain so everything is flipped and what appears to be left is actually my right side :)

Our meeting with the radiation oncologist

As you all know, today was the big day. We found out today that I have Primitive Neuroectodermal tumor (PNET). Which is a very rare brain tumor and brain cancer. The doctor joked that I don't mess around when I get sick since I have always been healthy and now when I am sick I get something rare. He showed us a picture of the mri I had done pre-surgery. Adam and I were in shock when we saw the size of the tumor. The thing was HUGE! It was big enough that it caused the midline of my brain to be shifted to the left. He said eh talked to the neurosurgeon and apparently when they opened up my skull the tumor was bulging out. That is why it was causing me so much pain and numbness because it was causing a lot of pressure in my skull. He said that the neurosurgeon is confident that he removed all visible tumor which is really really good because I guess that doesn't happen often. He did tell us that due to the fact that the tumor was located right next to the ventricles in my brain that produce spinal fluid there is a chance that the cancer spread down my spine. He doesn't think it has since I haven't been having any back pain, but they are doing a mri of my spine and a lumbar puncture to make sure. The treatment plan is 4 weeks of radiation on my brain and spine and then an additional 1.5 weeks of radiation on my brain directly where they removed the tumor. Then about 2 weeks after I finish radiation I will do Chemo. We don't know much about Chemo yet since they said they would talk to us about it closer to the end of radiation. He said that with the combo of radiation and chemo the cure rate is between 40-79% so we are thinking about 60%. That seems like pretty good odds to me! Adam wasn't completely happy since he wanted to hear 80% or higher, but I explained to him that anything about 50% is good when it comes to cancer. Some of the lovely side effects I can look forward to are: Fatigue, hair loss and nausea/vomiting. They already told us that they are planning on putting me on 8-12mg of steroids a day to prevent swelling and it is also supposed to help with nausea/vomiting. I'm not looking forward to that since I know it's going to make me gain weight since I already gained 6 lbs from the week and a half I was on them before.  Radiation won't start until the last week of October or first week of November since they can't do anything for 28-30 post op. The reason is they want to make sure the incision is fully healed and any swelling from the surgery is gone. So the next 2 weeks will be filled with ct scans, mris and lumbar punctures. Fun stuff right? I am just super happy that I will be able to take the boys trick or treating since I won't start treatment until Halloween or maybe a few days prior! One thing that made me sad was I was told I absolutely can not pick up the boys :(. You know how hard it is for a momma to not pick up her kiddos? Luckily, I'm allowed to hold them still I just have to be sitting down and someone else has to either hand them to me or they have to climb up on their own. Also, I will be getting a new car in the next few months since the lease is up on my car in December and I was told today that I'm not allowed to drive until at least a month after all treatment is done. That means no driving until February or March! So Adam will get to drive around my nice new car. Totally not fair. I was feeling a little down after my appointment today, but as the evening goes on and the more I talk about everything, the better I feel. I know it is going to be a rough couple of months, but I will get through it!
Adam and I are looking into getting shirt, hats etc. made and then donating any money made from selling them to brain cancer research. We don't have all the details worked out yet, but when we do I will make sure everyone knows! Also, my fabulous friend Stephanie has a button maker and has kindly offered to make buttons that have the A Team logo on it that my brother and dad had tattooed on themselves last week. As soon as I get the template from my brother I will post it here and if you are interested in a pin let us know :)