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 :)

Tomorrow's gonna be a big one

So tomorrow is going to be a big day. Tomorrow morning we are having a family photo shoot with the amazing Ashley Marie Photography (ashleymarie.biz). I have some amazing ladies who I met while I was pregnant with Aidyn(I have mentioned them before), well a few of them got together and emailed Ashley about doing a photo shoot for me since I really want some photos of the 4 of us and some of the boys now that Austin is more mobile and able to sit on his own. Ashley not only offered to do our photos for free, but she made sure that we would be able to have them taken before I started any radiation so we wouldn't have to worry about me being too sick or losing my hair before I got the photos I wanted. I am overwhelmed by her kindness. Not many people would be willing to do this. So, if you live in the Alamogordo area, look her up! Then we have an appointment at 2 pm tomorrow with the cancer center in Alamogordo. Even though Tricare is giving us a hard time and trying to deny the referral for me to see them, the nurse Adam talked to today said we are to still come. I am already impressed with them. Most doctor's offices would tell you that until you get your insurance worked out they won't see you, thank goodness that isn't the case here. I'm pretty sure tomorrow will just be a consultation where they will tell us what to expect and where we will meet our "team". We will also be finding out the official pathology reports. That is the part that scares me. Part of me doesn't want to know what they are going to say and part of me is hoping we will go in and they will tell us their original thoughts were wrong and that it was actually a benign tumor. Whatever they tell us tomorrow, we will get through it. I am going to do whatever I have to do to beat this and I know I will. I will post again tomorrow after our appointment to let everyone know what they tell us. Thank you all so much for the thoughts and prayers. They mean so much to my family and I and I know God is listening.

Been a long time

So it has been a long time since I posted a blog. Shame on me :(. Well, I guess now is the best time huh? As I'm sure most of you know I was diagnosed with brain cancer last week. Pretty crappy, but I'm not letting it get me down. Here's the story for those of you who don't know. Back in the middle of August I started having some left shoulder pain and numbness in my left hand. I went to the doctor and he looked at me And told me I had a 2nd degree muscle tear in my shoulder most likely caused by picking up one of the boys incorrectly. He prescribed me some muscle relaxers and some pain meds and told me I'd be as good as new in 2 weeks, but if I wasn't to come back in and see him and he would do some x-rays and such. Well, 2 weeks went by and I wasn't better, actually the pain was the same and the numbness had spread from just a few fingers to my entire left hand being numb. I just sucked it up and continued about life because I didn't have time to go to the doctor and I certainly didn't have time for surgery which is what I was sure the doctor would tell me that would be the fix. Jump to the weekend of September 23rd-25th. I woke up on Saturday feeling fine minus the shoulder pain and numbness. I went out shopping with some friends and had a good day. By dinner though I had a headache. Nothing terrible, just enough to be annoying. I woke up on Sunday and I still had a headache. As the day went on it got worse and even after taking ibuprofen it wouldn't go away. I was starting to think I may have a sinus infection because the headache was focused right behind my eye and in my sinuses. I went to bed early Sunday night only to wake up at 4 am in horrible pain. I got up and took 1200mg(way more then you are supposed to take fyi) of ibuprofen to tey and kill the pain. It dulled the pain but never got rid of it all the way. I spent most of the day on the couch and only got up to help the boys with little things. Luckily I have good kids who behaved themselves and didn't get in too much trouble while I laid on the couch. By dinner Adam was convinced something was seriously wrong and told me that we needed to go to the e.r. I assured him it was just a sinus migraine and I'd be fine. I even took some zyrtec in hopes that would relieve some pressure until I was able to get into the doc the next day. No luck there. On Tuesday morning the pain was bad enough that I was in tears and I actually told Adam I would rather be in labor then take the head pain. He tried to take me to the e.r. at 5am before he went into work but I told him we had no where to send the boys so we couldn't go. At 8 he called me to make sure I called the doctor to get in for a same day appointment. Well, I called and of course they couldn't fit me in. So now my choices were to suffer the rest of the day and hope they could get me in on Wednesday or go to the e.r. I debated until 9:30 when I finally decided that I couldn't take the pain anymore and that 3 1/2 days with a headache that wouldn't quit wasn't good. Not to mention the weakness I was feeling on my left side had started to get worse (I burnt myself on Sunday and didn't even know until Adam pointed out the blister on my finger). So I called Adam at work to have him sent home and called a friend to watch the boys. We got to the e.r. about 11 and were in a room by 11:30. Fastest I have ever been seen in the e.r. which I didn't take as a god thing. The e.r. doctor said I probably just had a migraine but something told him to do some neurological testing to be safe. Well, when he tried to get me to touch my left index finger to my nose and then his finger I couldn't do it. He made me try 3 times and I failed every single time. That prompted him to immediately order a ct scan even though he assured us that it would most likely come back normal. So they wheel me down and do the ct and tell us it will be 30 minutes before the results come back. While we wait the lab comes in and draws blood which I think is odd but whatever. Then a nurse comes in and says she needs to start an i.v. EXCUSE ME!?! I know they don't start iv's unless they are planning on admitting you or you are dehydrated and I know I'm not the latter. Then as she goes to get what she needs for the iv the doctor comes back and sits next to Adam with a concerned look on his face. He says, "Well, it isn't nothing like I thought. There is a decent size mass on your brain that you need to have looked at by a neurosurgeon and we don't have one in Alamogordo. We are going to transfer you to a hospital in El Paso. Oh and we are flying you there asap." Pretty sure Adam and I both shit our pants on the spot. They don't just put you on a helicopter to fly you to a different state for nothing ya know. Once I got to the e.r El Paso, a doctor came in and examined me(pretty sure he wanted to eat my eyeball he got so damn close to it) then informed me that not only were they admitting me they were admitting me to the step down icu/telemetry unit.. When we we asked why we were told because they needed to keep a close eye on my because of the mass on my brain. Yea, officially scared at this point. So we get admitted and they get me some pain meds and some steroids for the brain swelling and I'm finally able to get some sleep. Well as much as you can when they come and take you vitals every 2 hrs and do an ekg at 2 am. Then on Wednesday morning the neurosurgeon came in and talked to ua and did some more neuro tests which I failed miserably on my left side. He ordered a MRI and said he would be back to see us tomorrow but one thing he knew for sure was that I was to have brain surgery first thing Friday morning to remove the tumor. I was in shock. I just had a torn shoulder and a headache, I didn't need brain surgery to remove a tumor, he must have me confused with someone else. Nope, he didn't unfortunately. I went and had the MRI then pretty much sat around and waited. The surgeon came back on Thursday morning to tell us that I had what was called a glioma which was a cyst surrounded by tumor cells and he wouldn't know more until he opened my head and saw it for himself. Friday morning came and they came and got me at 6 am to do 1 final mri before the surgery and then I sat in the o.r waiting area for about 45 minutes. They wheeled me into the o.r around 8:30 and I'm told they rolled me out around 10:45 or so. I spent all day friday in the ICU which was horrible because I wasn't allowed out of bed at all. On saturday morning the surgeon came in and said that pending what the morning mri said (mri #3 in as many days) he was going to allow me to have real food and he was moving me to the post surgical floor. After the longest hr of my life in the mri machine. (In case anyone was curious, having a mri done on your head less then 24 hrs post brain surgery sucks really bad). I was moved to a new room around dinner on Saturday which I was super happy about because that meant I could finally get out of bed! Surgeon came and saw me on Sunday to check my head, told me that as soon as pt said it was okay, I was allowed to walk the halls and take a shower as long as I promised not to scrub my head. Still no pathology reports back, but he assumed they would come in first thing Monday morning. Monday around lunch he came back and said that it was an Ependymoma which is a form of brain cancer. The good news is that it is the kind that generally stays in the brain and doesn't spread. Bad news? It is cancer and it is one of the rarest forms of brain cancer. He said in his 20 yrs of practice he has only seen 1 other case. Pretty much there is a 1 in 2 million chance of someone getting it and it usually found in someone under 5 yrs old. I joked that maybe I should start playing the lotto since I have luck to get something so rare. I can't help but ask, "why me?" I have never done drugs, I don't drink, I don't smoke and I eat healthy I am only 23. The conclusion I have come to about why me? Because God knows that I can handle this and that I will come out on top and use this experience to help others. Like I tell all my family, I may have brain cancer, but I'm not going anywhere. I have 2 beautiful boys who need their momma and a loving husband who needs his wife. I'm gonna kick this Cancer's ass and then work hard to raise awareness about it and make sure that no one takes numbness or migraines lightly. Right now we are waiting to se the oncologist which will hopefully happen tomorrow or tuesday. I have some weakness on my left side still and my left hand only works about 50% of the time, but I can live with that. I feel pretty awesome considering they cut y head open a week ago I just get tired really easily and I now apparently have acid reflux which I never had before. I will make sure to post once we talk to the oncologist and let everyone know what he says.